Wednesday 15th February 2012
In the USA cases of CJD don’t have to be officially recorded so the true numbers of people developing this horrific disease may never be known. Of the reported cases of sporadic CJD there appears to be a huge, climbing rate of cases and this is in direct correlation with exports of BSE infected food and medicines from the UK.
With this blog is a photo of Andrew and Emma in Central Park New York December 2002, my son and family had lovely holidays in the USA and have great affection for its people and beautiful country but I fear that an explosion of cases of CJD in America is only the tip of the reported iceberg.
Cases of sporadic CJD are rising in EU countries too, many of these patients in Europe and the USA are significantly younger in their fifties, forties and even thirties and twenties.
Many families who have lost a loved one to CJD in the USA have contacted me with severe doubts about the diagnosis convinced their family member has died of vCJD but the USA authorities are covering this up. The families are subjected to a rigorous questionnaire about their loved ones lifestyle and also asked if they ever donated or received blood. The same questions asked by the CJD Unit in the UK when attending victims of vCJD.
What I have had confirmed is that cases of sporadic CJD throughout North America have quadrupled in many states and this is nothing to do with an ageing or growing population. Scientists and researchers have fed these case numbers into their computers and are astounded that so many American citizens and much younger ones too are developing CJD. There are clusters of cases which all point at some common source of infection.
Findings by independent researchers have shown that an environmental factor must be the cause of so many apparently healthy people succumbing to this form of prion disease which has all the hallmarks of vCJD.
When are governments going to be transparent and honest about the numbers of people dying of CJD? Here in the UK I have proved that the numbers officially recognised by the UK Department of Health are manipulated and false with many cases of vCJD never appearing on the list, to once again falsely reassure and unsuspecting public.
Unfortunately the beef, agriculture and pharmaceutical industries globally make so much money for governments and their officials that human health and honesty always comes bottom of the list. Below are the official numbers published by the National Prion Disease Surveillance Center in the USA. There is no final count for 2011 and what about the pending or inconclusive cases? Just how many people have really died of vCJD in the USA? And how many more will die in the coming years?
National Prion Disease Pathology Surveillance Center Cases Examined1 (August 19, 2011) including Texas
National Prion Disease Pathology Surveillance Center Cases Examined1 (August 19, 2011)
Year Total Referrals2 Prion Disease Sporadic Familial Iatrogenic vCJD
1996 & earlier 51 33 28 5 0 0
1997 114 68 59 9 0 0
1998 88 52 43 7 1 0
1999 122 74 65 8 1 0
2000 145 103 89 14 0 0
2001 210 120 110 10 0 0
2002 248 149 125 22 2 0
2003 274 176 137 39 0 0
2004 325 186 164 21 0 13
2005 344 194 157 36 1 0
2006 382 196 166 28 0 24
2007 376 212 186 26 0 0
2008 396 232 206 26 0 0
2009 423 256 213 43 0 0
2010 412 256 215 41 0 0
2011 216 134 105 21 0 0
TOTAL 41265 24416 2068 356 5 3
1 Listed based on the year of death or, if not available, on year of referral;
2 Cases with suspected prion disease for which brain tissue and/or blood (in familial cases) were submitted;
3 Disease acquired in the United Kingdom;
4 Disease was acquired in the United Kingdom in one case and in Saudi Arabia in the other case;
5 Includes 8 cases in which the diagnosis is pending, and 18 inconclusive cases;
6 Includes 9 (8 from 2011) cases with type determination pending in which the diagnosis of vCJD has been excluded.
http://www.cjdsurveillance.com/pdf/case-table.pdf
Thursday 9th February 2012
Below is an article by Jonathan Russell from The Telegraph newspaper. Once again corruption, sleight of hand and double dealing is helping John Gummer secure a financial killing. Time and again the Ex Minister of Agriculture remains above the law.
Gummer has re-branded himself an environmentalist when in truth he is just another Conservative peer making a fast buck at the expense of the public and peoples jobs.
The newspaper article says it all about the Tory cronies who created, allowed and gave BSE free reign into the human food and medicine chain. These powerful people still influence our government as they and their family members, friends and colleagues continue to reap the rewards regardless of how many people they have killed and how many lives they ruin.
TELEPGRAPH (3rd February 2012)
http://www.telegraph.co.uk/finance/newsbysector/supportservices/9039571/John-Gummer-accused-of-buying-Valpak-on-cheap.html By Jonathan Russell
John Gummer accused of buying Valpak on the cheap
John Gummer, the former environment secretary now known as Lord Deben, has been accused of trying to buy out a company he is involved in on the cheap.
The ex-Tory minister, still remembered for feeding a hamburger to his daughter at the height of the mad cow disease scare, is behind a £2.5m bid for Valpak, a company with revenue of £55m and £8m of cash in the bank. 
Lord Deben is a founding director of the environmental consultancy.
The Daily Telegraph understands Lord Deben's offer is roughly half that of a rival bid for the member-owned association that was rejected by directors.
The 4,000 members of Valpak are due to vote on Lord Deben's offer today.
Peter Hunt, managing director of Wastecare, was one of the rivals whose bid was rejected in favour of Lord Deben.
He said: "In my opinion this is a ludicrously low offer for a business which has £8m of cash at hand and is highly profitable.
"It looks like Lord Deben is getting his hands on this cash-generating business on the cheap. I would like to know why."
The offer to buy Valpak first emerged in August last year after the Government announced it was to change legislation on recycling packaging, Valpak's main business area.
An original offer of £700,000 was rejected by Valpak's members. It was followed up by the current deal backed by German group Grun Punkt.
Under the terms of the deal Valpak members will get £340 each in initial payment with a further £270 conditional payment. At least part of the consideration will come from Valpak's own cash resources.
Gerald Orbell, senior independent director for Valpak said: "Valpak has reached a point in its company life-cycle where it must move on. The independent directors stand by their recommendation that the management-led buyout with Greenpoint is the best option if we are to remain the market leader."
Monday 6th February 2012
The Mail online (5th Feburary 2012)
Revealed: Plans to secretly test 30,000 NHS blood transfusion patients as CJD fears escalate
Those who have had more than 80 blood transfusions 'most at risk'
Experts expect to see 150 cases of vCJD among monitored group
By
Beezy Marsh
Thousands of NHS patients could be secretly monitored by the Government for symptoms of the human form of mad cow disease amid concerns that there could be another wave of infections.
Experts advising the Department of Health believe patients who have received more than 80 blood transfusions are most at risk of developing the fatal brain disease because it can be passed on through infected blood.
They say monitoring these patients could give vital clues about the way the disease develops and is transmitted from person to person and could help work out whether there are likely to be further deaths.
Thousands of NHS patients could be secretly monitored by the Government for symptoms of the human form of mad cow disease amid concerns that there could be another wave of infections
It could also inform officials whether the risk from blood donations needs to be treated more seriously.
But they are considering conducting their surveillance secretly because they fear that informing patients they are at risk and are being monitored will cause unnecessary alarm.
The proposals have been discussed by a powerful panel of leading scientists and doctors, which advises the Government on the disease, known as variant CJD.
The panel's report, published online, suggests conducting 'covert health surveillance' of around 30,000 patients known to have received a high number of blood transfusions.
Experts would expect to see at least 150 cases of vCJD in this group of patients, based on scientific evidence that between one in 4,000 and one in 20,000 of the population may be infected.
Experts believe patients who have received more than 80 blood transfusions are most at risk of developing the fatal brain disease as it can be passed on through infected blood
But this has so far not been seen and may either mean the risk is lower than previously thought, or that it is taking longer for cases to develop.
The 'highly transfused' group includes people suffering life-threatening illnesses including acute leukaemia, aplastic anaemia and the blood disorder thalassemia - as well as those with multiple injuries due to road accidents, or heavy blood loss from aneurysms.
The report acknowledges that following patients without their consent is 'ethically problematic'.
But the panel, a subcommittee of the Advisory Committee on Dangerous Pathogens, has asked the Health Protection Agency to set out the various options for monitoring these patients based on seeking their consent or not.
Chris James, chief executive of the Haemophilia Society, said: 'We are shocked to learn there was ever any suggestion of non-consensual monitoring.
'Given the history of contaminated blood in the 1970s and 1980s, the maintenance of medical ethics is especially important to the haemophilia community.
'Any proposed framework must be reviewed by an ethics committee and open to challenge from individuals and organisations such as ourselves through a formal consultation process.'
Latest official figures show seven NHS patients have died from vCJD after having blood transfusions.
Four are known to have been given blood from people who were infected with fatal vCJD, and the other three had previously had transfusions although it is not known whether the blood was contaminated.
Since the first vCJD cases emerged in the mid-1990s, 175 people in Britain have died from the brain wasting disease, which is linked to eating beef infected with BSE.
Experts predicted that hundreds more could die after receiving blood infected with the disease. But they now admit they are baffled as to why these cases have failed to emerge.
One theory is that some people have a genetic advantage and may only carry the disease without developing symptoms. However, they can still infect others if they give blood.
In one case, a patient is known to have been exposed to vCJD in a blood transfusion and is still alive 24 years later.
At the moment, patients are only informed that they are at increased risk of developing vCJD if they have been exposed to blood from more than 80 donors and if they are about to have brain, spinal or complex eye surgery.
But this threshold may now be raised to only inform patients if they are exposed to 300 or more blood donors because the lack of vCJD cases so far may indicate that the risk of catching vCJD in blood may be lower than previously suspected.
Judy Kenny, of the CJD Support Network, whose husband Deryck died aged 69 in 2003 after being given contaminated blood, said: 'If the authorities are going to do any monitoring, patients should be aware of it.
'There is no grey area - if they are thinking about unconsented monitoring, then it is wrong.'
CJD occurs when nerve-tissue proteins called prions turn 'bad' and gradually destroy the brain
Professor Chris Bunce, science director of charity Leukaemia and Lymphoma Research, said: 'The extent of the risk [of vCJD] to patients who receive regular blood transfusions as part of their treatment is as yet uncertain.
'One way to ascertain the risk would be to monitor the distribution of the pathogen among people in this group.
'But with that comes the moral question of whether patients should be informed or not, and this is the dilemma of the Health Protection Agency.'
A Department of Health spokesman said: 'No decisions have been taken on any unconsented follow-up of highly transfused patients.
'No unconsented follow-up has taken place and none would without appropriate ethical approval and on the basis of legal advice.'
Read more: http://www.dailymail.co.uk/news/article-2096643/Mad-Cow-Diesease-Plans-secretly-test-30-000-NHS-patients-CJD-fears-escalate.html#ixzz1lWd8FN2o
Wednesday 1st February 2012
The first officially recognised case of probable vCJD has been reported in Turkey. My thoughts are with the 47 year old man and his family at this traumatic time. This victim comes from the MV genotype the most common in the UK population. (52 percent). This individual highlights a growing number of cases from MV group; experts predict hundreds more will die from in a second wave of victims from this genotype.
Though this gentleman never visited the UK once again it highlights how far and wide BSE infected material has leaked into the global community. I believe many more people have and are dying of vCJD across our communities but due to the difficulty in diagnosis many of these victims are being registered as dying of some other disease.
A blood screening test is essential so that victims can remain in their homes with their families for as long as possible. Individual blood screening tests for vCJD will also herald treatments and cures in much the same way as the HIV
blood screening test has now enabled patients to live long and productive lives.
My prayers are with the 47 year old Turkish man and his family, may your god go with you all…..
Dement Geriatr Cogn Dis Extra. 2011 Jan-Dec; 1(1): 429–432. Published online 2011 December 24. doi: 10.1159/000332024 PMCID: PMC3265806
Copyright© 2011 by S. Karger AG, Basel
The First Report of a Patient with Probable Variant Creutzfeldt-Jakob Disease in Turkey
Demet Özbabalik Adapýnar,a* Suzan Saylýsoy,b Çinar Yenilmez,c Hüseyin Aslan,d Bengü Ertan,a Sevilhan Artan,d Gülcan Güleç,c Çigdem Susuz,a and Baki Adapýnarb
aDepartment of Neurology, Eskisehir Osmangazi University Medical Faculty, Eskisehir, Turkey
bDepartment of Radiology, Eskisehir Osmangazi University Medical Faculty, Eskisehir, Turkey
cDepartment of Psychiatry, Eskisehir Osmangazi University Medical Faculty, Eskisehir, Turkey
dDepartment of Medical Genetics, Eskisehir Osmangazi University Medical Faculty, Eskisehir, Turkey
*Demet Özbabalik Adapýnar, Eskisehir Osmangazi University, TR–26480 Meselik/Eskisehir (Turkey), E-Mail
demetg@ogu.edu.tr
Abstract
Variant Creutzfeldt-Jakob disease (vCJD) was first reported in the UK in 1996. Here, we report the first Turkish case of vCJD. A 47-year-old man, who has never lived outside of Turkey and had had no transfusion, was admitted to the University Hospital with speech disorder, cognitive decline and ataxia following depression, irritability, and personality change. The immunoassay of the 14-3-3 protein in the cerebrospinal fluid was negative. Brain magnetic resonance imaging revealed high-signal lesions involving the bilateral caudate and lentiform nucleus on T2- and diffusion-weighted imaging. The patient developed akinetic mutism 10 months after disease onset. The clinical presentation and neuroimaging findings were compatible with the vCJD cases reported since 1996 and met the World Health Organization's case definition for probable vCJD.Key Words: Magnetic resonance imaging, Prion, Variant Creutzfeldt-Jakob disease
To date, more than 215 cases of vCJD have been identified worldwide, including in the UK, France, Ireland, Italy, the USA, Canada, Saudi Arabia, Japan, The Netherlands, Portugal, Spain, and Taiwan. In the present paper, we report the clinical and radiological data of the first Turkish case of vCJD.
Case Report
A 47-year-old man, who was previously healthy and had no history of psychiatric or neurological disorders before the onset of this disease, presented with a 6-month history of progressive behavioral and personality changes, depression, and cognitive decline. His relatives reported that personality changes were his first symptoms. He had been a rigorous, disciplined, and frugal person, who was dependable at work and a valued member of his family; however, he became aggressive, extravagant, foul-mouthed, sexually disinhibited, and angry. His wife reported that the patient would have sudden outbursts of agitation, and 2 months later, these outbursts were followed by paranoid behaviors and possessiveness. Due to the psychiatric nature of his complaints, he was admitted to a psychiatry clinic, where he was diagnosed as having a manic disorder and was given atypical antipsychotic drugs. Three months later, the patient exhibited gait changes, ataxia and dysarthria, severe forgetfulness, difficulties in swallowing and eating, and incontinence. The patient developed involuntary movements in both of his feet, with dystonic aversion-inversion posturing and occasional erratic movements. He became dependent and apathetic and exhibited regressive behaviors. The patient also exhibited visual hallucinations, during which he reported seeing animals. Some of these complaints may have been side effects from his medication and, consequently, several of the patient's medications were stopped or changed.
As a result of the progressive deterioration of the patient's general status, his relatives transferred him to the Psychiatry Department of our University Hospital. After the neurological examination conducted at the Psychiatry Clinic, he was diagnosed as having rapid progressive dementia with early onset and was hospitalized at the Neurology Clinic. As reported in the patient's medical history, he had never been exposed to cadaveric pituitary hormones, had never undergone a neurosurgical procedure, organ or tissue grafts, or a blood transfusion, and had never travelled to the UK or to any country with reported incidences of BSE.
The neurological examination revealed that the patient was disorientated in place and time. In addition, he was mute. Nystagmus and conjugate gaze dysfunction were present, as were cerebellar ataxia, dysmetria, and dysdiadochokinesia. The patient's tone was slightly increased in his lower limbs, and his plantar responses were extensor.
The level of protein in his cerebrospinal fluid was increased, and no 14-3-3 protein was detected. An electroencephalogram showed a generalized slowing of wave, which was more evident in the left hemisphere, but did not have any periodic complexes. He was referred to the Radiology Department for cerebral MRI. On T2-weighted images and fluid-attenuated inversion recovery (FLAIR) images, hyperintense signal changes in the bilateral caudate nuclei (white arrows) and the lentiform nucleus (black arrows) were seen. In addition, hyperintensity in the bilateral thalamic region was less prominent than in the previously described areas (fig. 1a–c). Cortical hyperintensity was noted on diffusion-weighted imaging.
Fig. 1 MRI shows hyperintensity in the bilateral caudate (white arrows) and bilateral lentiform nucleus (black arrows) as well as in the bilateral thalamus (curved arrow) on axial T2-weighted image (a) and coronal FLAIR image (b). Ribbon-shaped hyperintense (more ...)
Genotyping of the prion protein gene (PRNP) identified a P102L mutation and heterozygosity for methionine at codon 129.The patient did not want to undergo a brain biopsy, and we continued to follow his progress at his home. At the time this report was written, the patient was alive, mute, and on bed at rest.
The patient described in the present report was the first probable case of vCJD in Turkey. The clinical features of this patient are consistent with the vCJD cases that have been identified in the UK and France, including psychiatric manifestations at the disease onset, a delayed occurrence of neurological signs, ataxia, and dementia [3]. In addition to the pulvinar sign that was present on the MRI and EEG, the patient fulfilled the WHO case definition for probable vCJD, the specificity of which is 100% [4]. Of note, a tonsil biopsy is not necessary if the clinical features and the MRI findings are compatible with vCJD, as the pulvinar sign is highly characteristic [5].
Sequencing analysis revealed that the patient had two different nucleotide changes in the coding region of the PRNP gene. The first one is the M129V polymorphism, and our patient was heterozygous for this alteration. Interestingly, all the patients who have undergone genotyping up to now have been homozygous for methionine at codon 129. This polymorphism is associated with susceptibility to prion diseases [6]. The second one is the P102L mutation, which was first identified in affected members of two unrelated families with Gerstmann-Sträussler disease. P102L is one of the most common PRNP mutations and also related to CJD.
This case highlights the difficulties in achieving an early diagnosis of vCJD. At the initial presentation, a variety of diagnoses were proposed, but vCJD was not considered in this patient. Instead, he was diagnosed as having an affective disorder at the psychiatry clinic. The delayed neurological signs in this patient pointed to the possibility of progressive dementia, which is not surprising given the frequency of psychiatric features that are observed by primary care physicians. These clinical features are often misleading. Almost half of the cases of vCJD were reviewed by a psychiatrist prior to the patients’ neurological referral [7]. A neurological etiology was usually suspected promptly after the patients developed objective neurological features, which resulted in a neurological referral in all of the cases. The single most important determinant of early diagnosis was the presence of objective neurological features. For this reason, all physicians must be careful when diagnosing rapidly progressing dementia that begins at a young age.
The results presented in this report indicate that patients with vCJD are still seen in the medical community. In the present study, we have reported the first Turkish vCJD case, which appeared 15 years after the first case in the UK.
Saturday 28th January 2012
The research below highlights the ticking health time-bomb due to ‘silent carriers of vCJD’.
As this paper reveals many of the mice exposed to the rogue prions that cause vCJD carried the disease in their spleens and lymph glands.
A blood screening test for vCJD is the only way to totally prevent other innocent people from dying of the human form of BSE through blood transfusion, organ, tissue, skin donation or invasive medical procedures. We test for HIV why not for vCJD?
http://www.nature.com/news/prion-diseases-hide-out-in-the-spleen-1.9904
Nature | News
Prion diseases hide out in the spleen
UK population could harbour thousands of silent infections. Jo Marchant
26 January 2012
The prion proteins that can cause variant Creutzfeldt–Jakob disease in humans could be lurking undetected in our lymphatic system.
Prion diseases such as bovine spongiform encephalopathy (BSE) and variant Creutzfeldt–Jakob disease (vCJD) are able to jump species much more easily than previously thought. A study published in Science today shows that in mice, prions introduced from other species can replicate in the spleen without necessarily affecting the brain.
The study reinforces the concern that thousands of people in the United Kingdom might be silent carriers of prion infection, potentially able to pass a lethal form of the disease to others through surgery or blood transfusions.
Prions are infectious pathogens, primarily composed of the misfolded form of a protein called PrP. Normal PrP molecules that are converted into the misshapen type then aggregate in the brain to form hard, insoluble clumps — with fatal consequences.
Previous studies have judged the ease of cross-species transmission by looking for clinical symptoms as well as the presence of prions in infected animals’ brains. Results from these studies suggested that in many cases there is an effective 'species barrier', with most inoculated animals seemingly free of prions at the end of their lives.
Breaking barriers
But prions don’t just replicate in the brain — they also affect lymphoid tissue, such as the spleen, tonsils and appendix. So Vincent Béringue, a prion researcher at the French National Institute for Agricultural Research in Jouy-en-Josas, France, and his colleagues used mice that had been genetically engineered to express either the sheep or human version of PrP to look beyond the brain.
The researchers injected prions from elk, hamsters and cattle into the brains of the engineered mice — all species barriers that are supposedly very hard to cross — then looked for prions in the spleens and brains of the mice at regular intervals after exposure.
As expected, few of the mice had detectable prions in their brains. When those expressing human PrP were inoculated with the BSE prion, only 3 out of 43 had detectable prions in their brains at the end of their lives. But in lymphoid tissue it was a different story, with 26 of 41 spleens testing positive for prions, even though the mice showed no clinical symptoms of BSE.
The research shows that prions jump species into lymphoid tissue much more easily than into brain tissue, says Béringue. “If you extrapolate that to the human situation, you can imagine that there are more people infected subclinically in lymphoid tissues such as the spleen, who may never develop the disease.”
That’s a concern because these carriers could infect others, for example by blood transfusion, organ donation or contaminated surgical instruments. Once passed human to human, the infection could in theory then affect the brain and cause lethal vCJD, says John Collinge, director of the Medical Research Council Prion Unit at University College London, who wrote an analysis to accompany the Béringue paper
. “The main adaptation — that the incoming BSE proteins have triggered the formation of human prions — has occurred,” he says.
An epidemic of BSE among cows, dubbed 'mad cow disease', in Britain in the 1980s, led to stringent controls on meat production and the use of surgical and dental instruments. Human cases of the disease, vCJD, were first seen in the mid-1990s. That sparked fears of a devastating human epidemic, around 200 people have died from the disease since then..
But two recent surveys of tissue samples from removed appendixes suggest that as many as 1 in 4,000 people in the United Kingdom could be carriers
.
Béringue’s findings could help to explain these results, says Collinge. “These estimates suggest there may be 15 to 20,000 people in the United Kingdom incubating the disease,” he says. “Maybe they predominantly have an infection restricted to the lymphoreticular system.”
Collinge warns that “all efforts should be made” to assess the prevalence of prion infection in the United Kingdom by analysing surgical and autopsy tissues, and to investigate whether blood tests for vCJD can detect the infection in silent carriers. “Maybe they will never develop the disease themselves,” he says. “But it’s precisely those people who present a risk to others.”
Thursday 19th January 2012
I like to thank the many millions of supporters of www.justice4andy.com campaign and families affected by vCJD. Without your tireless campaigning and the medias help funding for Professor Collinge’s vCJD blood screening test would have been catastrophically delayed and the test may have well been shelved.
The released cash now means lives have and will be saved as each delay of vital individual screening tests for vCJD means more people are being exposed via blood, medicines, organs and hospital procedures.
I have been down this path before when brilliant scientists have developed a blood screening test only to be scuppered by Whitehall. .
Every time the UK government quash and sideline valid tests they are doing so not in the interest of public health but in the interest of those responsible for BSE.
Funding for Professor Collinge’s test was only achieved due to constant pressure from various organisations, groups and individuals in the shape of meetings, demonstrations and investigations. Without this pressure and support Professor Collinge’s test would have been withheld through lack of money. Collinge was told by Anne Milton that no funding would be available despite her knowing the recent findings from the Health Protection Agency who predict at least 14,000 people in the UK silently carry vCJD, many of whom would be blood donors and have hospital procedures. .
The Conservative led UK Government were and are trying to stop research and funding so that individual blood screening tests are not implemented in the lifetime of those responsible for BSE.
Every way possible is being used to block, seriously delay and hamper individual screening tests for blood donors. Filteration is being mooted and even kits area being manufactured as I write this, who are the shareholders in these companies?
The UK DOH are trying to raise the bar so high that no blood test would ever pass its protocols or guidelines. The influence of Kenneth Clarke, Richard Packer, Gummer and their cronies stretches right into every niche and corners of David Cameron and his immediate family.
I fear that as soon as the individual screening test is able to be rolled out into the UK blood supply that further delays and blocks will rear their heads from the UK Department of Health at the behest of Westminster and Downing Street. I am monitoring their actions and decisions from within and without.
The current funding being provided to develop Prof Collinge’s test I believe may be a ‘token’ to appease and quieten campaigners, media and scientists. This is now a statement from myself on behalf of
www.justice4andy.com and on behalf of the British population whose families and children’s lives are paramount. Its not a case of ‘if’ but ‘when’ an individual blood screening test will be implemented into the public domain and that will come much ‘sooner’ than the Government want or expect. Foreign scientists as well as those in the UK have the technology for vCJD blood screening.
The days of Gummer, Clarke and their cronies freedom and influence over the lies and cover-ups of BSE and its lethal human pathogen vCJD are numbered.
Blood screening individuals will show prevalence, those exposed to BSE, silent carriers and also the exact source and route of the infection. There will be no hiding place then for those responsible who unlawfully killed my only son Andrew. Also finally I can sleep well at night knowing that our blood supply is individually screened for vCJD and no other innocent person will die of vCJD through blood, operations or medicines.
http://www.telegraph.co.uk/health/healthnews/9014386/Blood-test-could-help-to-diagnose-deadly-mad-cow-disease.html
Monday 16th January 2012
I have been filmed for a feature for Channel Four News see link below about screening blood for vCJD. It was broadcast on Friday 13th 2012 at 7pm,
http://www.channel4.com/news/blood-test-breakthrough-for-mad-cow-disease
Here is also a link to youtube clips
http://m.youtube.com/watch?gl=GB&hl=en-GB&client=mv-google&v=mvldEuvn6iM
UK CHANNEL FOUR NEWS
Friday 13th January 2012
A blood test for variant CJD is for the first time being offered to patients from around the UK and some from abroad who are suspected of having what was once known as mad cow disease.
Channel 4 News has learned that a notification has been sent to neurologists around the country from the NHS National Prion Clinic and the
Medical Research Council's Prion Unit saying that the blood test is now available. Between five and 10 samples a week are now being sent in from here and other countries where there have been cases of vCJD.
Professor John Collinge, who has been part of the team developing the blood test, said that so far the test had not produced any false positive results - that is, where a test shows there is infection when there is not.
This is a significant step forward in the fight against the disease. Until now the only way of confirming the diagnosis has been through tonsil biopsies during life or after the patient has died and brain samples can be taken.
Channel 4 News has also learned that funding from the Medical Research Council has meant the team has now been able to begin a crucial new phase in assessing the blood test. This involves testing 5,000 anonymous samples from the US, supplied from the American Red Cross. America has low levels of exposure to BSE and the tests will enable the scientists to assess the false positive rate.
This is a significant step forward in the fight against the disease.
Prof Collinge said if they find there are a significant number of false positives then "it will be back to the drawing board."
If, on the other hand, the test works, then the next step will be to screen 50,000 anonymous UK blood donors which would allow the first accurate assessment of how many people in this country are carrying the disease.
Recent studies from tonsil samples show that possibly one in 4,000 people in the UK or 15,000 in total may be infected with the disease, although some tests have put the numbers slightly higher.
The latest figures from the
Health Protection Agency show that there have so far been 176 definite or probable cases of vCJD from when it was first detected in humans in 1995 until the end of 2011. Channel 4 News understands that there was a "cluster" of deaths at the end of the year in which four people died.
Variant CJD is a human form of bovine spongiform encephalopathy (BSE) which first emerged in Britain in 1986 as a result of beef offal being fed to cattle. The prions which are responsible for BSE and vCJD were found in the brains, spinal cords and spleens of cows. When the meat was mechanically recovered, and turned into the likes of hamburgers and baby food, the prions entered the human chain.
Variant CJD is a cruel disease which causes a form of dementia, affecting both the brain and nervous system. It has a long incubation period and mainly affects young people. The majority of deaths have been in those in their 20s, although there have been exceptions.
The development of a possible blood test was announced last February in a scientific paper published in
The Lancet. Permission has now been given by UCLH, the hospital trust to which Prof Collinge and his team are attached, to start a clinical evaluation in patients in whom a diagnosis of vCJD is suspected.
Currently blood undergoes leukodepletion which involves the removal of the white blood cells. But this does not remove all the prions and there have been several cases of people infected with vCJD after receiving blood products. There have also been cases of people being infected through the use of surgical instruments.
It is understood that a 50-year-old woman died from vCJD within the past few weeks after she received a blood transfusion in 2002 - four years after leukodepletion was introduced.
Professor Collinge told Channel 4 News said that the blood test was "extremely good news".
Click here for
other health stories from Channel 4 News
"In principle, it may allow us to find how many people in the population are infected so we can target risk management strategies and ensure the safety of our blood supply," he said.
"It could also enable us to make an earlier diagnosis and as treatments become available it is going to be desperately important to get to patients early before there is extensive damage to the brain."
Christine Lord, whose son Andy died in 2007 from vCJD, told Channel 4 News that the sad thing was that many people thought this disease had gone away.
"The importance of a blood test means we would protect people and prevent future deaths," Ms Lord said.
"Since my son's death I have visited many more young men and women who are dying with vCJD. It continues to kill on a regular basis. My concern as a Mum who has lost her only son is that no other Mum, Dad or family will go through this. The pain is absolutely unbelievable."
Frank Dobson, who was the Health Secretary who introduced leukodepletion, urged the government to provide any necessary future funding.
"Up to now we have been flying blind, applying the precautionary principle. We now need to have extensive trials because we do not know who is carrying it and who is donating blood," he said.
But apart from government backing needed if they are able to go to the next phase and start testing UK blood samples, Professor Collinge said they would also need a commercial company to step in and take over because his laboratory is simply not capable of dealing with such large scale samples.
Christine Lord's website is
www.justice4andy.com
Friday 13th January 2012
As another year begins without my only son Andrew by my side, I remain as determined as ever to seek the justice he deserves. I continue to honour the promises I gave my dying son who asked me ‘Find out who did this to me mum and expose them’ and always thinking of others ‘This must never happen to anyone else again.’
‘Time doesn’t heal’ the pain I feel over my Andrew’s avoidable and untimely death it will be a despairing cry I carry with me till my last breaths. But Andrew also left me a legacy of wonderful memories that I take with me on each demonstration, each challenge of those responsible, each incriminating document I uncover, each piece of the puzzle that is painstakingly being put together. I know that one day soon those who unlawfully killed my boy will be punished.
The only thing necessary for the triumph of evil is for good men to do nothing.
Edmund Burke
Friday 6th January 2012
It seems that lessons have not been learnt 27 years after the first cow was diagnosed with BSE ageing, diseased and ill cattle are still entering the human food chain. Why is this still happening and allowed to happen in 2012?
When cattle get older like humans they are prone to disease and ill health. The report below from the UK end of year review is totally unacceptable to me a parent who has lost a dearly loved child to the human form of BSE. How many more cattle have entered the food chain which are not recorded and have not been tested for BSE?
The slaughtering facilities which dispatched cattle not tested for BSE could still be rife with rogue prions as normal cleaning procedures would not eradicate the deadly disease. Also the equipment used to slaughter these animals are metal and the rogue prions that cause BSE adhere to metal. The working environment which processed these animals are still operational and continue to churn out cattle destined for our dinner plats. Only the basic precautionary methods are used and normal sterlisation procedures cannot kill BSE which has no DNA and is not a virus or a live bacteria. BSE continues to affect UK herds in 2012, if there had been a mass cull of cattle in the 1980s we would not now be faced with this ‘ticking health time-bomb’ and my son and other victims would not have died of vCJD.
BSE/vCJD was and continues to be a UK man made manufactured disease formulated, and enabled by Whitehall, this deadly disease is still being condoned by the UK government as they put profits and those responsible for the animal and human disease before the lives and health of the British public and global community.
Potential mad cows that entered food supply without being tested for BSE 2011: UK END OF YEAR REVIEW
Bullock aged over 72 months enters food supply without being tested for BSE
Wednesday 21 December 2011
The Agency has been notified that meat has entered the food supply from a bullock aged over 72 months that had not been tested for BSE. A negative BSE test result is mandatory for cattle slaughtered for human consumption at over 72 months of age.
It is very unlikely that the bullock was infected with BSE and, as specified risk material (SRM) was removed, any risk to human health is extremely low. SRM is the parts of cattle most likely to carry BSE infectivity.
The bullock, aged 75 months and 28 days, was slaughtered at N Bramall & Son Ltd’s abattoir in Oxspring, Nr Sheffield, on 6 October 2011. The error was discovered on 1 December in the course of routine cross-checks of slaughter and BSE test data.
According to BSE regulations, the untested bullock, plus the one slaughtered before and the two after, should not have entered the food supply. However, by the time the failure was discovered, the associated carcasses had left the premises.
One of the carcasses was sent to the Netherlands where the authorities have been informed. The hearts and cheek meat from all the associated carcasses were traced and have since been destroyed. Other checks indicate that the rest of the meat from the carcasses is either no longer in the food supply or traceable and is likely to have been eaten.
http://www.food.gov.uk/news/newsarchive/2011/dec/bullockfoodchain
Bullock aged over 72 months enters food supply without being tested for BSE
Monday 14 November 2011
The Agency has been notified that meat has entered the food supply from a bullock aged over 72 months that had not been tested for BSE. A negative BSE test result is mandatory for cattle slaughtered for human consumption at more than 72 months of age. It is very unlikely that the bullock was infected with BSE and as specified risk material (SRM) was removed, any risk to human health is extremely low. SRM is the parts of cattle most likely to carry BSE infectivity.
The bullock, aged 75 months and 7 days, was slaughtered at C&S Meats Ltd’s abattoir in Dorset, on 2 September 2011. The error was discovered on 27 October in the course of routine cross-checks of slaughter and BSE test data. According to BSE regulations, the untested bullock, plus the one slaughtered before should not have entered the food supply. However, by the time the failure was discovered, the associated carcasses had left the premises. Subsequent checks traced a 20kg piece of meat from the untested bullock that has since been destroyed and indicate that the rest of the meat from the carcasses is no longer in the food supply.
http://www.food.gov.uk/news/newsarchive/2011/nov/csmeats
Cow aged over 72 months enters food supply without being tested for BSE
Wednesday 26 October 2011
The Agency has been notified that meat has entered the food supply from a cow aged over 72 months that had not been tested for BSE. A negative BSE test result is mandatory for cattle slaughtered for human consumption at over 72 months of age. It is very unlikely that the cow was infected with BSE and as specified risk material (SRM) was removed, any risk to human health is extremely low. SRM is the parts of cattle most likely to carry BSE infectivity.
The cow, aged 74 months and 11 days, was slaughtered at Anglo Dutch Meats (Charing) Ltd’s abattoir in Kent, on 11 August 2011. The error was discovered on 6 October in the course of routine cross-checks of slaughter and BSE test data. According to BSE regulations, the untested cow, plus the one slaughtered before and the two after should not have entered the food supply. However, by the time the failure was discovered, the associated carcases had left the premises. Subsequent checks indicate that the meat from the carcases was mixed with a large volume of other meat which is no longer in the food supply and is likely to have been eaten.
http://www.food.gov.uk/news/newsarchive/2011/oct/anglodutch
Tuesday, April 19, 2011
Bull aged over 48 months enters food supply without being tested for BSE Monday 18 April 2011
Bull aged over 48 months enters food supply without being tested for BSE Monday 18 April 2011
The Agency has been notified that meat has entered the food supply from a bull aged over 48 months that had not been tested for BSE. A negative BSE test result is mandatory for cattle slaughtered for human consumption at over 48 months of age.
It is very unlikely that the bull was infected with BSE and as specified risk material (SRM) was removed, any risk to human health is extremely low. SRM is that part of the animal most likely to contain BSE infectivity.
The bull, aged 88 months, was slaughtered at S J Norman & Sons’ abattoir in Bridport, Dorset on 3 February 2011. The error was discovered on 5 April in the course of routine cross-checks of slaughter and BSE test data.
According to BSE regulations, the untested bull should not have entered the food supply. However, by the time the failure was discovered, the carcass had left the premises.
Subsequent checks indicate that all the meat from the carcass is no longer traceable and is likely to have been eaten.
http://www.food.gov.uk/news/newsarchive/2011/apr/otmbull
Sunday 25th December 2011
CHRISTINE’S CHRISTMAS AND NEW YEAR MESSAGE TO:
Margaret Thatcher, John Major, Ray Bradley, John Gummer, Stephen Dorrell, Colin Maclean, William Rees, John McGregor, Keith Meldrum, Kenneth Clarke, Kenneth Calman, Douglas Hogg, Richard Packer, Elizabeth Attridge, Dr Jeremy Matters, Richard Carden, Alan Lawrence, Robert Lowson, Gerald Wells, Sir Derek Andres, Dr Alisa Wright, Angela Browning, Thomas Eddy, M H Baker, Dr Bernard Williams, Dr Robert Kendall, Dri Richard Kimberlin, Ron Jacobs, Dr Gerald Jones, Dr Hilary Pickles.and all those others named and shamed on
www.justice4andy.com.
MY LOST BOY
When you sit with your children and grandchildren on Sundays and celebrations, watching them laugh, talk and grow do you ever stop to think about your deliberate decisions that led to so many avoidable deaths?
When carving the roast, a table full of family and friends do ever think about the victims? The youngsters that were unable to hold a knife and fork eat smile or recognise because you allowed BSE unchecked into the human food and medicine chain ?
‘BRITISH BEEF IS SAFE’ was the mantra you as Ministers and government officials declared through the 1980s and 1990s. Whilst my son an innocent sat down to his MRM encrusted school dinners, stood bravely to receive his bovine rich immunisations as the pathogen that would kill him entered his little frame.
On September 2nd 1983 I proudly held my first born, a healthy 8lb boy bawling at the brand new world and all its possibilities. Within a year I was a single mum struggling but with one purpose to love and keep him safe. For seven years it was Andrew and me, walks in the park, picnics by the sea a chubby hand holding mine. With a childs certainty that whatever life would bring, mum would care protect and defend. I can see us kicking autumn leaves, jumping into puddles, I felt and smelt life with the brand new eyes of my only son.
I remember a soft faced kiss from Andrew as he left for school returning with a painted footprint encased on a calendar dated 1987. Then every night on TV footage of mad cows staggering, falling all over the place staring wide eyed out of the screen. Media frenzy, newspaper headlines a fearful British public.
Andrew and I hardly ate beef only home cooked food, mostly vegetables a very fussy eater he hated any sort of fat. From the first reports of BSE, no beef products were ever prepared or eaten in my home again.
1988 Andrew starts school dinners, what can be wrong with pizza, veggies dishes? I didn’t know …all were toxic and bulked out with MRM (mechanically recovered meat, the most toxic part of a BSE cow. Spinal cord, brains, cheeks were washed off the carcass forming a pink paste this was used in institutional and baby food during the 1980s and 1990s MRM was not banned until 1996).
For over ten years you Ministers and government officials held the lie ‘BRITISH BEEF IS SAFE’, selective research and selective information fed to an unsuspecting British public. You knew that BSE was lethal to human health yet you smugly put your careers and economic policy before every member of the UK populations health.
As the BSE scandal grew I thought that Andrew was safe, pushing my trolley around the supermarket beef prices plummeting I opted for turkey or mostly vegetables …so no worry there.
I thought I had protected my beautiful boy who was so funny in his nativity play, who was so quick and curious about the world, I took him to the theatre, cinema he absorbed new experiences like a sponge……
1990 Andrew has a sister Emma an impatient minx who wraps him round her little finger. He becomes her guardian her protector ‘ Mum Emma needs a drink Mum 'Emma wants to leave’ and ‘I will always take care of my little sister’ I rename us the three musketeers our little family of three.
I study harder, write more furiously, work so hard but always time for my little family of three. At night as they sleep I worry about the bills , the future, Christmas, but always knowing that whatever life throws at me, it doesn’t matter my kids are ok and will have long and wonderful lives.
Andrew at 10 running through the school gates with the wind beneath his trainers, in a rush full of energy. Emma a little busy body looking upwards to her older brother like the god he is to her.
At fourteen Andrew starts work experience in London with TalkRadio, by 17 he is producing live programming during 9/11. His colleagues call him ‘legend of the desk’. My son… my hero ….my future……
One million cows are infected with BSE , cows culled, incinerated steaming piles of carcasses disintegrate across the countryside 
The usual arguments between brother and sister sibling rivalry but underneath always love. The three of us travel cheaply together abroad my growing children experiencing new people and cultures.
Andrew at 21 had forged an exciting career and his potential assured was working in Birmingham, Manchester and his favourite city London. My Andrew presenting a pilot TV programme, researching, producing always a new project or script. I am as proud as only a mum can be!
At 23 he becomes quiet, arguments vicious between him and the sister he loves. I watch helplessly as Andrew becomes introverted distant, a stumble here a missed word there, weight falling from his once muscular frame.
Within weeks depression? ‘Mum I’m not depressed what’s wrong with me?’ A succession of GPs, Counsellors, Consultants. All tests normal, I insist on a Neurologist.
June 2007 ... the diagnosis vCJD, a death sentence 6 months max .By December my talented bright eyed boy became quadriplegic, blind, deaf, unable to recognise me, his brain like a sponge he dies. Andrew died because you Mr Minister and officials you lied and covered-up the truth putting your careers and profit before my beloved son’s life and future...
Every New Year, Christmas, Easter and celebration when you sit, laugh and enjoy your complete family in a comfortable home with a career forged on immoral deliberate decisions and lies do you ever have a moments doubt or fear?
Do you ever think of Andrew and the hundreds of other victims of vCJD when you raise your glass at another birthday or Christmas. Do you ever regret your political and economic fuelled decisions that led to my Andrews death?
Every Christmas, birthday, mothers day and Easter I will walk alone to my 24 year old sons grave, weep broken hearted as I place flowers on the spot where his body lies.
Tuesday 20th December 2011
BLOOD TEST FOR VCJD
A blood test for variant Creutzfeldt-Jakob disease: briefing note for patients, carers and health professionals.
A blood test for variant Creutzfeldt-Jakob disease (vCJD) has been an important goal of medical research laboratories and companies around the world for many years. It has been very difficult to achieve because the infectious agent (germ) causing vCJD, known as a prion, has unique features that mean that the sensitive methods doctors normally use to detect the presence of a germ (detecting the body’s antibody response to the germ or the germ’s own genetic material) do not work.
The Medical Research Council (MRC) Prion Unit, working with the NHS National Prion Clinic at the National Hospital for Neurology and Neurosurgery (NHNN) in London, has now developed an entirely new type of test following a number of years of intensive research.
The test is at an early (prototype) stage but is able to correctly identify the large majority of patients with symptoms of vCJD and has not yet given any false results in patients with other brain diseases or in healthy individuals. We think this is an important breakthrough and it raises a number of issues which need to be carefully considered. Details of the test have been published by the leading medical journal, the Lancet, on 3rd February 2011. The full text of the paper is available here.
This brief article describes CJD and other so-called prion diseases, why a blood test is important, how the test works and how to approach us at the National Prion Clinic to inquire further about this test. It is important to be cautious about this news, because although the results so far are very encouraging, we want to go on to look at blood samples from much larger numbers of healthy people and those with other brain diseases to get a better idea of how specific the test is in practice. This will be vital before a version of this test could be considered to routinely screen healthy blood donors.
What are prion diseases? Also known as transmissible spongiform encephalopathies, prion diseases are a group of rare fatal conditions affecting the brain. Prion diseases are caused by one of the body’s normal proteins, called the prion protein, changing its shape and forming clumps of protein in the brain. This process damages and eventually kills brain cells. In humans, there are three different ways these diseases can start. The commonest form is called sporadic CJD and this form is seen all over the world and appears to occur at random as an unlucky event when the production of prions in the brain is triggered spontaneously. Secondly, the disease can be passed down from generation to generation as a genetic condition in some families with a faulty prion protein gene. Thirdly, and most importantly from the point of view of this new test, someone can “catch” a prion infection by being exposed to infectious prions.
These illnesses affect both animals and humans. The animal prion diseases include scrapie, a common prion disease affecting sheep and goats which is not thought to pose a threat to human health and bovine spongiform encephalopathy (BSE or mad cow disease) in cattle which can jump species to infect humans. BSE prions are responsible for variant CJD which was first recognised in 1996 and which has so far affected about 200 people, most from the UK. It is thought that people become infected by BSE prions by eating food containing material from BSE-infected cattle, although other sources of exposure are possible. Much of the UK population born before 1996 (when rigorous measures to limit exposure were enforced) have potentially been exposed to BSE-contaminated food and the number of people who may carry the infection but remain healthy is unknown.
Why is a blood test important? vCJD (as with other forms of CJD) tends to be diagnosed only when the patient has had the disease for some time and has developed symptoms that are associated with extensive damage to the brain. There are several reasons why this is the case. The early symptoms of the disease (such as anxiety, depression and tingling pains in the legs) have many much more common causes and so doctors will understandably not attribute these symptoms to something much more serious until other features such as difficulty with movement or balance and loss of mental abilities occur. At this stage, it will be apparent there is a serious brain condition but a series of tests are required to make the diagnosis and these take time to organise and interpret. Because the disease itself typically progresses quite rapidly (over weeks and months), the patient is likely to be showing quite advanced symptoms by the time a confident diagnosis is reached. A simple blood test gives us an opportunity to make the diagnosis at a much earlier stage. While at present there is no treatment we know is effective in stopping progression of these diseases, an early diagnosis does avoid the need for other tests and gives the patient and their family a clear answer. This enables them to make the best use of their time together and spend less of this precious time in hospital. However, experimental drugs are being developed at the MRC Prion Unit and elsewhere with a view to clinical trials in the next few years and we would want to try such treatments at the earliest stage before irreversible brain damage has occurred.
It is now known that vCJD can be passed on by blood transfusion. Several vCJD patients had been blood donors before they developed symptoms of the disease. To date, three individuals who had received blood transfusions from such donors have themselves developed and died from the disease. A further individual, who had also received prion-infected blood, died of unrelated causes but showed evidence of prion infection at autopsy examination.
Only a very small number of individuals are definitely known to have received such potentially infected blood transfusions. However, several thousand individuals have been notified by the Health Protection Agency that they have received possibly infected blood products such as plasma, clotting factors, or purified antibodies. One individual who had received a clotting factor from a donor who went on to get vCJD died of unrelated causes but showed signs of vCJD infection at autopsy. It is not known whether this individual would have gone on to develop the disease had he not died of other causes.
Prion diseases are known to exist in “carrier states” in laboratory animals and these would be expected in humans too. A “carrier” is a person infected with prions but who does not show any signs of disease in their natural lifetime. Such carrier states are well recognised with other infectious diseases in humans. In the UK population, following an anonymous study of archived tissue specimens, the Department of Health uses an estimate that 1 in 4000 individuals may be silently infected with vCJD prions in its risk calculations. There is considerable uncertainty about this figure, that is, the true number could be significantly higher or lower than 1 in 4000. It is also not known how many of those infected will eventually go on to develop the disease itself. We do know that incubation periods in human prion diseases can be very long, over 50 years in some cases. As these infected but healthy individuals cannot currently be identified in the population, many will be active blood donors and could pass on infection to other people in this way or by medical and surgical instruments used on them becoming contaminated by prions (since prions are quite resistant to normal sterilisation methods). The National Blood Service has taken several actions to try to minimise this risk, for example, by removing white cells from blood, however it is uncertain how effective these measures are at reducing risk, or indeed whether they are really justified should the real number of infected people turn out to be extremely small.
A future development of our blood test may allow us to screen donated blood and further increase the safety of blood transfusions. Also it may in the future allow individuals who have been exposed to vCJD infection to find out if there is evidence that the infection has taken hold in their body. However, considerable further research will need to be done first to find out how specific the test is when tested on large numbers of health donors and to understand how good the test will be at detecting infected blood from healthy individuals rather than those with the established disease.
How well does the test work? It has been hard to develop a test for prion disease because the body’s immune system does not fight off prion infection by making antibodies (that can be readily detected in a blood test) in the same way it does against germs like bacteria or viruses. It has been challenging to develop a test that can distinguish between the normal prion protein, which we all have in our blood, and the abnormal form linked to the disease which is chemically very similar.
Scientists in the MRC Prion Unit have developed a prototype test. This involves taking a small blood sample from a patient as with any other blood test. A small sample of blood is mixed with special metal beads to which the rogue prion proteins stick tightly. These are then washed to remove the normal prion protein and other blood components that would interfere with the test. Finally, the amount of rogue prion protein attached to the beads is measured using antibodies we have developed that bind very tightly to the prion protein.
The test was applied to a number patient samples including from patients with vCJD, those with sporadic CJD, other neurological diseases that might be confused with vCJD and a number of healthy blood donors. As vCJD is a rare disease, only relatively small numbers of samples were available for this testing. All samples were given code numbers and the scientists carrying out the test in our laboratory did not know which sample was which. We were able to try the test on 21 samples from different vCJD patients. 15 of these 21 patient samples (around 70%) were shown to be positive by the test. So far, all samples from other neurological diseases or healthy blood donors have tested negative but only relatively small numbers of these have been looked at so far (about 200). We are testing larger numbers of samples now. At present the test does not work in other forms of prion disease such as sporadic CJD but we are hoping this will be possible with further work in the future.
What happens now and how is the test going to be made available? We are ready to use the test to assist with diagnosis of patients who are suspected of having vCJD or other diseases that might be mistaken for vCJD. Working with neurological colleagues to begin to use the test will also help us get more information on the test itself and hopefully lead to further improvements and understanding of its usefulness. A request card needs to be completed which can be obtained here. We require at least 2 x 5ml EDTA vacutainer tubes. For sample delivery please see further details here. While we are working to increase the throughput of the test, at this stage it remains relatively labour intensive. Whilst we will attempt to return results at the earliest opportunity, clinicians should allow up to four weeks for results. Please call the Clinic for further details.
The National Prion Clinic at the National Hospital for Neurology is happy to take telephone enquiries about suspected prion disease patients. We are particularly interested in referrals of patients at an early stage of their illness when diagnosis is most difficult.
Please visit the NHS National Prion Clinic website
http://www.uclh.nhs.uk/ourservices/servicea-z/neuro/npc/Pages/Home.aspx for more details and telephone/email contact details.
http://www.prion.ucl.ac.uk/clinic-services/investigations-tests/#BloodTest
Friday 16th December 2011
Today at 9.25pm 16th December 2007 my only son Andrew was unlawfully killed by vCJD.
‘Time heals’ ‘moving forward’ is never an option for me and families affected by vCJD as those responsible for our loved ones untimely deaths remain unpunished and free.
There is no ‘resolution’ or ‘peace’ because too many lies and half truths continue to surround BSE and its lethal pathogen vCJD. How can I ever be free of pain when my only son lies buried deep within the cold earth? My Andrew should be living his life, laughing and breathing in the sparkling frost of a December day. His death was unlawful and yet no one has ever faced a court of law or jury?
This song/poem paraphrased from Roberta Flacks 1972 version describes the ongoing forever love I have for my Andrew. It reminds me of that wonderful day 2nd September 1983 when I held my healthy 71b 10oz baby boy in my arms for the very first time. The joy and love my Andrew gave to me does indeed fill the universe his loss reaches every part of my soul and to infinity.
There is no sell by date on a mother’s love and my determination to protect and help my son get justice continues to burn brightly and with ferocity as strong as the day my beloved boy died.
THE FIRST TIME EVER I SAW YOUR FACE
The first time ever I saw your face,
I saw the sun rise in your eyes
and the moon and the stars were the gifts you gave to me, my love.
The first time I ever held you close,
I felt your trembling heart, beating right next to mine, my love.
That was when I knew your joy would fill the earth for all time, my love.
And the last time ever I saw your face,
I knew your heart will stay so close, so close to mine, until the rest of time.
Tuesday 13th December 2011
How many people have and are dying of cjd due to secondary infection, receiving cells, organs, blood and other human tissue from individuals incubating or carrying cjd?
The UK Department of Health are keeping secret the true numbers of people who have been affected. Many people ‘at risk’ of cjd have not even been informed of their status leaving them to possibly transmit cjd to a third wave of victims.
The second case in South Korea highlights the long incubation period of prion disease I fear in the next years and decades we will see many more needless deaths of cjd due to secondary infection. The blame lies firmly at the feet of those named and shamed on this website, if BSE had never existed then many of these innocent victims would still be living long and fulfilling lives with their families and friends.
2011/12/08 11:08 KST
S. Korea confirms second case of Creutzfeldt-Jakob disease
SEOUL, Dec. 8 (Yonhap) -- South Korea's health authorities on Thursday confirmed the country's second case of Creutzfeldt-Jakob disease (CJD), a degenerative neurological disorder.
A 48-year-old man was diagnosed with iatrogenic CJD (iCJD) on Wednesday, according to the Center for Disease Control. The person's identity was withheld for privacy reasons.
The report of the country's second-ever iCJD case comes after a 54-year-old woman was found last month to have died from the same disease that is often transmitted by the use of defective prion proteins found in surgical tissue graft products.
The woman had received brain surgery using Lyodura, a tissue graft product, some 23 years ago. The KCDC said the man in the latest case had also received Lyodura during brain surgery in 1988.
This form of CJD has an incubation period of more than 20 years but once symptoms occur, death usually takes place within a year.
CJD is the most common of so-called human prion diseases with one person in every 1 million diagnosed each year worldwide. It is an invariably fatal illness with death occurring after the onset of dementia, hallucinations, coordination dysfunction and seizures.
The animal form of the disease is called bovine spongiform encephalopathy (BSE) which is commonly called mad cow disease. BSE also leaves holes in the brain that resemble a sponge.
Thursday 8th December 2011
In this recent article below Mail online 6th December 2011, experts discuss how Alzheimer’s may be infectious to others and also passed onwards through surgical equipment or transplanted material. Professor John Collinge who is a world expert in vCJD was asked to chair a secret meeting. Collinge told me and the BBC that ‘much younger and rising cases of CJD is due to BSE’. Experts in Europe also confirm Prof Collinge’s stance.
So how any cases of other dementia based illnesses have been really caused by the ingestion of BSE infected material during the 1980s and 1990s?
We would indeed be expected to see much older people succumbing to vCJD but perhaps in the elderly it manifests itself slightly differently? We are indeed seeing a sleight of hand regarding the recording of deaths due to dementia and CJD, as its much easier to put pneumonia on an elderly persons death certificate.
Is the same infectious agent which causes vCJD also responsible in part for the epidemic of dementia cases across the globe? Is Vcjd in young people called sporadic cjd/dementia in the elderly but is one and the same disease?
More and more young people are becoming affected by Alzheimer’s and we face a huge rise in cases that does not correlate to better diagnosis or growing populations. Individuals in their 50s, 40’s and even 30’s are succumbing to this brain wasting disease which before BSE only concerned the elderly and was much rarer. In some countries cases of dementia have tripled in the last decade, which correlates with the incubation period of consuming BSE infectious material.
I am also getting more and more reports from families telling me that their mum or dad are being offered unasked for MRI scans at the earliest stages of memory lapses. Is this just about cures and treatments? Or as I suspect the DOH are covertly monitoring just how many of us are being affected by cjd.
There is also a higher risk of a person developing cjd/Vcjd if they have worked as a health professional especially with the elderly. This surely points at some infectious agent that can be caught from another person. What about the pathologists, dentists and surgeons who have died of CJD/vCJD how did they become exposed? All of this as usual is clouded in secrecy, many victims of vCJD had close association with people who were suffering from Alzheimer’s with no few than 5 of the most recent victim’s mothers caring/working with the elderly who had dementia.
I believe many cases of sporadic CJD and dementia may be connected by one infectious agent BSE.
Too many coincidences but never enough answers in the public domain? Why are we not being told the truth?
Read more: http://www.dailymail.co.uk/health/article-2070373/As-experts-consider-possible-link-tainted-surgical-instruments--Is-Alzheimers-caused-brain-infection.html#ixzz1flZfuYHa
Friday 2nd December 2011
Below are details of a death of cjd in Korea due to an operation, this is significant as it once again shows how cjd can be passed onwards from person to person, via tissue, cells, blood and contaminated instruments. This is known as iatrogenic CJD which means acquired via surgery, blood, cells, transplant or other medical proceedures/interventions.
Families affected by vCJD across the UK and our global communities prayers are with this 54 year old woman’s family. During my trips to South Korea I made many friends and was warmly welcomed by the Korean population, who showed sympathy and affection to me and were appalled at Andrew’s preventable and unlawful death.
South Korea and its people continue to support the campaign for justice for all victims of vCJD. A blood screening test would prevent people contracting cjd via surgery, contaminated instruments or blood. The equipment and theatre used to operate on this Korean lady has now put later patients at risk of developing cjd, as prions cannot be destroyed by normal sterlisation.
This lady’s death also highlights the long incubation period of cjd ’23 years’ since her medical procedure. During her life she may also have had further surgeries or other interventions all of these will now carry a ‘risk of cjd’ for other patients.
How many more people across UK and globe will develop, carry or ‘be at risk’ of developing cjd in the coming decades? It’s a worrying scenario that may have ‘biblical proportions of innocent victims.’ Whilst the UK Department of Health deliberately prevaricate, withhold funding and block current individual blood screening tests for donors they are committing a criminal act against the health and well being of the UK population and people from abroad who are and will be affected.
First iCJD Death Confirmed in Korea
http://creutzfeldt-jakob-disease.blogspot.com/2011/11/first-icjd-death-confirmed-in-korea.html
Korea's Centers for Disease Control and Prevention, announced Tuesday, that a 54-year old woman died of Creutzfeldt-Jakob disease in November last year.
The incurable and invariably fatal brain disease has a long latent period and creates holes in the brain when an outbreak occurs.
Authorities believe the woman contracted the disease during brain surgery in 1987 when she received a transplanted membrane from overseas.
[Interview : Park Hye-kyung, Head of Infectious Diseases Surveillance
Centers for Disease Control and Prevention]
"The deceased patient went through a brain tumor surgery and received a transplant of a dura mater called 'Lyodura' that was imported from Germany.
Her CJD symptoms appeared twenty-three years later, in June 2010."
Korea's health ministry, however, said that, there is NO correlation, between the woman's case, and the variant Creutzfeldt-Jakob Disease, which is often referred to as, human mad cow disease.
Currently there are four known types of CJDs.
The most common form is called sCJD, or sporadic CJD, which accounts for nearly 90 percent of all outbreaks and its cause is known to be natural mutation.
There is also the familial type of CJD, which is believed to be genetic.
The vCJD, or variant Creutzfeldt-Jakob disease is transmitted from cattle with mad cow disease.
This woman's case was Korea's first case of iCJD, or iatrogenic Creutzfeldt-Jakob disease which is caused by transplants of infected human tissues.
Some 400 iCJD cases have been reported in 20 countries throughout the world.
Doctors say that iCJD cases such as this one are very rare because the German manufacturer who supplied the membrane to the woman halted production of dura mater in 1987. and many producers have since reinforced preventive measures.
The World Health Organization also banned production of membranes from tissue extracted from corpses in 1997.
[Interview : Kim Yun-joong, Neurology professor
Hallym Medical School]
"Most providers reinforced the inactivation of infectivity by raising the level of sodium hydroxide.
That is the reason why outbreaks rarely occured after 1987."
The Centers for Disease Control said that they will follow-up with other patients who went through similar surgeries in the '80s.. to trace whether there might be other cases.
Song Ji-sun, Arirang News.
NOV 30, 2011 Reporter : song@arirang.co.kr
Tuesday 29th November 2011
Spinal fluids
http://www.nature.com/news/2011/110130/full/news.2011.59.html
Published online 30 January 2011 | Nature | doi:10.1038/news.2011.59 News
CJD diagnosis just got easier
Test for Creutzfeldt–Jakob disease raises hopes of speedier diagnosis.
Tiffany O'Callaghan In prion diseases such as CJD, an isomer of a prion protein takes on an abnormal shape.AP Photo/Professors Stanley Prusiner/Fred Cohen, University of California San Francisco Medical School
Invasive biopsy is currently the only sure way to diagnose the degenerative neurological condition Creutzfeldt–Jakob Disease (CJD). But a highly sensitive assay could change that, providing a fast, accurate alternative for early diagnosis of this rare but deadly condition.
In its most common form, known as sporadic CJD, the disease affects roughly one in a million people. Beginning in the 1990s, several cases of a variation of CJD known as vCJD were reported among people who had consumed beef from cows infected with another disease, bovine spongiform encephalopathy (BSE).
The findings, published online in Nature Medicine, also suggest that the assay — developed by microbiologist Ryuichiro Atarashi of Nagasaki University, Japan, and his team — could pave the way for the screening of broad sectors of the population.
CJD is a prion disease, in which an isomer of a common protein known as the prion protein (PrP) takes on an abnormal shape and becomes an infectious variant called PrPSc. This variant is thought to trigger the subsequent malformation of other PrP proteins. Unlike their normal counterparts, PrPSc prions cannot be broken down, and instead accumulate — often clustering in brain tissue.
The pockets of abnormal tissue that result cause brain tissue to develop a sponge-like appearance, and because prion conditions can be spread by affected humans or animals, the diseases are often referred to as transmissible spongiform encephalopathies (TSEs). Humans can be affected by several such conditions, while in addition to BSE in cows, there are several other such disorders among animals, including a condition called scrapie in sheep and hamsters.
No false positives
One problem that has plagued developers of non-biopsy diagnostic techniques is that it is often difficult to avoid false positives among samples taken from patients with neurodegenerative disorders other than CJD.
So Atarashi and his colleagues used a new assay known as a real-time quaking-induced conversion (RT-QUIC) assay. 'Quaking-induced' refers to in vitro shaking, which researchers believe helps to accelerate the reactions, enabling the assay to produce results more quickly.
The team tested cerebrospinal fluid samples from 18 people with CJD and 35 people with other neurodegenerative diseases. This pilot group produced no false positives, and CJD was correctly diagnosed more than 83% of the time.
The researchers compared these results with those obtained using an existing assay that tests for levels of a protein known as 14-3-3, which is a marker for sporadic CJD. When tested on patient samples, the accuracy of 14-3-3 was 72.2%, whereas the specificity was 85.7%.
In a subsequent blind trial on 30 cerebrospinal fluid samples from Australia, RT-QUIC showed 100% specificity, resulting in no false positives among the 14 control samples, and correct diagnoses of 87.5%. 14-3-3 was equally accurate, but the rate of false positives was much higher.
"This technique allows definitive ante-mortem confirmation of CJD," says Atarashi, adding that this is currently difficult because it demands the detection of PrPSc in patients' biopsy specimens.
Supersensitivity
The RT-QUIC assay is also extraordinarily sensitive — detecting the presence of harmful prions at very high dilutions — and speedy, yielding results within 48 hours.
Atarashi first began developing RT-QUIC as a researcher at the National Institute of Allergy and Infectious Diseases, Rocky Mountain Laboratories, in Montana. In 2008, he and his team successfully used it to screen cerebrospinal fluid taken from scrapie-infected hamsters
2.
In December, Atarashi co-authored a paper reporting the efficacy of the RT-QUIC assay on nasal secretions and cerebrospinal fluid from hamsters with prion disorders
3.
Byron Caughey, chief of prion/TSE research at the Rocky Mountain lab and a co-author of the two hamster studies, is encouraged by the application of the assay to human cerebrospinal fluid samples. "Of course it will also be important to detect prion diseases in other species, but human diagnosis is of pre-eminent importance," Caughey says.
And although the next step is to replicate the findings in a much larger sample, the promise shown by RT-QUIC in analysing substances other than spinal fluid in hamsters suggests a potentially fertile area for future research in humans. If RT-QUIC could be used to screen blood samples, or cheek or nasal swabs, for example, it could open up the possibilities of much earlier diagnosis and more widespread screening of donated blood.
"The earlier you're able to detect the presence of an infection in humans or animals, the more chance you have of preventing transmission to others and treating the disease in those who are infected," Caughey says.
Saturday 26th November 2011
Please check out this article about vCJD and the campaign demanding that blood donors should be individually screened for vCJD before they give blood.
Donating blood is the gift of life and many victims of vCJD and families affected by the human form of BSE have been blood donors. We understand that no blood donor wants to pass on a deadly disease with their donated blood.
We can prevent a secondary wave of vCJD through blood, organs, tissues and contaminated medical instruments. Its vital that the UK government and the DOH fully commit to pushing forward the many blood tests that have been developed within the UK and abroad.
With this blog is a photo of MP Frank Dobson former Labour Health Minister who supports families affected by vCJD. Our aim and goal is for all UK donated blood supply to be screened and free of the rogue prions that cause the human form of BSE.
Once this is rolled out in the UK it will mean that blood banks across the world can also test and screen their blood, preventing future and further deaths of vCJD not just here in the UK but throughout our global communities.
The test is simple, safe and relatively cheap at present the UK spends over £200 million a year buying in blood and during the last bush fires in Australia the country had to buy in blood due to many of its residents having connections with the UK. There is a global shortage of blood and one of these reasons is due to the many people excluded from donating blood due to their connections with the UK. Many more people would be able to give blood safely once this test is implemented.
This blood screening test will save lives and money.
http://www.suite101.com/news/memorial-service-for-victims-of-vcjd-campaign-for-safe-blood-a396565
Tuesday 22nd November 2011
Yesterday Monday 21st November Holly Mills aged 26 the longest surviving victim of vCJD died at her home in North Yorkshire.
Holly was cared for 24/7 by her devoted parents Linda and Peter, their daughter was diagnosed aged 18 years old in 2003. The beautiful bright student who was training to become a mid wife was disabled and wheelchair bound within months of symptoms appearing.
Peter and Linda Mills are convinced their daughter remained alive due to the intervention of a controversial drug called pentosan which does appear to slow down the progression of the disease. Early diagnosis of vCJD is essential so that medications like pentosan can be administered as soon as possible. Blood screening is essential so that treatments and cures can be developed for CJD.
My thoughts are with Holly’s parents at this terrible time and they can be assured that Holly will never be forgotten and the campaign will continue to fight for justice for all victims of vCJD.
Friday 18th November 2011
Hundreds of children across the UK have lost a mum or dad to vCJD, many of these were under the ages of nine years old. There are also many other children who have watched as their older brother or sister has died of vCJD. These hundreds of youngsters are ‘living victims of vCJD’ profoundly affected by the UK man made manufactured disease.
VCJD not only disables and kills its victims it also takes, destroys and wrecks the immediate family’s lives and sometimes their futures as well. Many families have been brought to their knees, emotionally, physically and financially caring for a family member suffering from vCJD. There is never any peace or resolution as there are just too many lies and half truths circulating about BSE and vCJD. We as families are not told the truth and the public continues to be kept in the dark.
Here is a photo of Charlie and Chloe, they lost their father Dean aged 25 to vCJD just over a year ago. Charlie was just 18 months old and Chloe aged four had just started school when their dad died. Their mum has told them that Dean is now a star in the sky watching over them, Chloe and Charlie say goodnight to the stars every evening. .
These are the victims that never go on any statistics who the Conservative led government and Kenneth Clarke want to pretend don’t exist.
Chloe and Charlie like all the children bereaved by vCJD have human rights to have a family life and a parent that is alive and not dead through vCJD.
With 5,000 letters being sent to people across the UK who are now ‘at risk’ of developing vCJD due to contaminated blood/instruments, the numbers of children who are affected continues to grow.
The campaign continues and families affected by vCJD remain steadfast and on course for justice and accountability. With this blog is also photos of children who attended the memorial service for victims on 12th November 2011.
Tuesday 15th November 2011 
Here are just some of the photos from the memorial service in central London on Saturday 12th November 2011.
Former Labour Health Minister Frank Dobson MP joined families and together with the support of the Labour Party we launched a campaign demanding all blood donors to be screened for vCJD.
The UK public have the right to know prevalence in the population and as Dr Simon Mead pathologist and CJD expert said ‘Without early diagnosis we won’t get effective treatments for any prion disease.’ We have the technology to use this test now to find out just how many people in the UK may be ‘silently carrying’ or ‘ incubating’ vCJD. The test has already been used secretly on individuals and the results were astounding.
Frank Dobson released balloons with some of the children who have lost a loved one to vCJD. Hundreds of children across the UK have and continue to be affected by vCJD after loosing a mum, dad, sister, brother, cousin, Aunt or Uncle to vCJD. Their grief will remain with them for their whole lives. These like the individuals ‘at risk of vCJD’ due to contaminated blood are the ‘living victims of vCJD’ the thousands that never appear on any official government statistics, whose lives remain within the shadow of vCJD.
We as families affected will continue to strive to protect the UK public and global community, your family and friends as the UK government continue to manipulate and stall the cutting edge science that could save so many lives.
Part of this game plan is the UK government and DOH drip, drip feeding funding for vCJD paying a limited lip service to research in selected areas so that we never find out true prevalence in the population or develop treatments/cures. Anne Milton and the DOH with the backing of the Prime Minster appear to be doing something when in fact they are doing very little.
The last thing David Cameron’s old guard such as John Gummer and Kenneth Clarke want are living, breathing, talking victims of vCJD. The last thing they also want is a blood screening test as this would show just how many people are carrying vCJD. So the UK Government pretends to help find the answers to BSE/vCJD, whilst behind the scenes are shutting down, concealing and stopping real progress.
Validation of a screening test for vCJD should be priority instead it has and will be hampered by deliberately placed protocols, bureaucratic gobble gook so that the test will have little chance of validation. As soon as the test appears to be close to validation another goal post will be moved. This corrupt game playing is a direct result of the BSE scandal and the many officials that will be implicated when a blood screening test comes to fruition. Why doesn’t David Cameron meet with parents affected by vCJD move away from the Tory party of the 1980s and 1990s and make good all the lies and corruption from the BSE scandal? He has a chance now to prevent further deaths of vCJD but is David Cameron more concerned with retaining his friendships with John and Peter Gummer and Kenneth Clarke who all helped and continue to fund the Prime Ministers political career? 
Families of victims of Vcjd and those thousands of ‘living victims’ will continue to break down this corrupt edifice and put our and your family’s health paramount, we have no financial gain to be made, nor career advantages to be had, we speak from the heart..
We will keep up the pressure politically, scientifically, and behind the scenes with the many good men and women that now support the campaign.
An individual blood screening test for all donated blood is a certainty, so those officials and minions that are now trying their best to dissuade, interfere, bully, influence or silence those scientists and medics who have a test, must be prepared for the consequences when their actions and interference on every level become public knowledge.
On Saturday alongside the Human BSE Memorial Plaque in central London there was great sadness and many tears but also a steadfast determination for justice, transparency and the demand for treatments and tests. The technology is there and as families affected by vCJD will not relent till these significant health issues are addressed and the UK blood supply and hospital equipment is safe and free of vCJD.
Sunday 13th November 2011
On Saturday 12th November 2011 families from across the UK and the globe gathered in central London to commemorate international CJD day. I organised a multi faith memorial service for all those affected by CJD.
At 1pm families, friends and colleagues of those killed by vCJD and individuals ‘at risk’ of developing vCJD remembered all of our lost loved ones.
Everyone across the UK and globally affected by prion disease was remembered. The many hundreds who have died the thousands of lives wrecked, futures stolen and potential dashed.
During the event families launched a campaign demanding the UK government fund and support the development and implementation of a blood screening test for vCJD.
Former cabinet and Health Secretary Labour MP Frank Dobson gave a moving speech and with the Labour party he is backing families in their campaign for justice and for all blood donors to be individually screened for vCJD.
Prince Charles and the Duchess of Cornwall sent their best wishes though Prime Minister David Cameron and his cabinet refused to attend the ceremony.
Names of some of the hundreds who have died of vCJD were read out, flowers placed alongside the human BSE plaque on the embankment opposite the Houses of Parliament.
Four balloons were released during the ceremony, one by Reillie Simpkins (aged 11) on behalf of the hundreds of children under the age of 10 who have lost a mum, dad, sister, brother to vCJD.
Another balloon was released by me for all victims of CJD and prion disease across the UK and internationally.
A third balloon was released by Pete Buckland who lost his son Mark to vCJD in 2006 aged 32 after he received a contaminated blood transfusion.
The final balloon was released by MP Frank Dobson on behalf of the millions of UK citizens who have been exposed to BSE and may be silently carrying or incubating vCJD.
I was interviewed by TV and radio as were other families before and during the event, see link below to some of the press coverage.
Blood safety is paramount to all families affected by vCJD we do not want other mums, dads or families to suffer the heartbreak we do every day. A blood screening test for vCJD will show prevalence, prevent future and further deaths of vCJD via blood and support treatments/cures into all prion diseases.
At present the UK government control every aspect of vCJD they hold the purse strings, vCJD blood samples and are withholding validation of any blood screening test. UK
and foreign scientists have developed tests, the technology is there but all cutting edge scientific knowledge and research is held to ransom by the UK Government and DOH.
The same officials who agree to funding also agree to validation and implementation. It’s a monopoly run and engineered by a few experts and committee’s who are salaried or funded by the DOH. As MAFF owned all the BSE heads and tissue samples of cattle during the 1980s and 1990s in 2011 the UK Government own and control everything to do with research, treatments and cures into vCJD. Some of the same officials that were at the heart of the BSE scandal now block and withhold significant medical breakthroughs into the Human form of BSE.
Human health is never paramount for the UK Conservative led Government, the same attitude that created, allowed and condoned BSE is now operating in our current cabinet in number Ten Downing Street. Making money, funding, agendas, political careers always come before the UK population health and well being.
When Andrew lay dying he asked me ‘Find out who did this to me mum and expose them; and always thinking of others ‘This must never happen again’. Myself with the help of affected families, Frank Dobson, the Labour Party and the UK population will continue to honour those promises. We will not forget our loved ones those that have died of vCJD, those currently dying, those living victims affected by contaminated blood and those unfortunately who now incubate or carry the lethal pathogen.
With this blog is a photo of me and Andrew summer of 2007 when my only son was dying of vCJD and also a photo Billy Smith nursed by his mum Rose who died of vCJD aged 21 years old.
‘The dead cannot cry out for justice it is the duty of the living to do so for them.’
http://www.itv.com/meridian-west/screening-for-cjd83414/
Tuesday 8th November 2011
Here is a photo of my beautiful daughter Emma with her fellow friends and students as she received her degree from Kingston University London.
I am so proud of my girl and after the ceremony we had lunch at London’s best vegetarian restaurant.
The day was wonderful as I watched my daughter take another step into her adult life the future ahead bright with such wonderful possibilities.
I know my Andrew was just a heartbeat away and would be so proud of his little sister too! We miss him so much…….
Friday 4th November 2011
I have been informed by families that two victims of vCJD have died within weeks of each other.
One of the victims was a young man in his twenties from the Gloucester area the other a middle-aged mother living in the south of England.
The lady developed vCJD after receiving a blood transfusion in 2002.
My thoughts and prayers are with the families at this terribly sad time, once again lives have been wrecked, futures stolen by a UK man made manufactured disease, which was totally avoidable in humans.
John Gummer, Kenneth Clarke, Margaret Thatcher and all those responsible for the unlawful deaths of so many innocent people should hang their heads in shame…
With this blog is a photo of me outside portcullis house, houses of parliament during one of my many meetings with members of the establishment who support the campaign and are providing me with more evidence for a criminal investigation.
‘The dead cannot cry out for justice it is the duty of the living to do so for them’.
Wednesday 2nd November 2011
http://www.dailymail.co.uk/health/article-2055904/Could-face-return-CJD-Experts-fear-lie-dormant-thousands.html
Could we face the return of CJD? Experts fear it may lie dormant in thousands
By Lois Rogers
Last updated at 8:09 AM on 1st November 2011
Holly Mills, aged 15 - three years before she developed the full-blown symptoms of CJD
Holly Mills was a lively teenager about to start university. But with her whole life ahead of her, she suddenly found herself in the grip of tragedy.
Within the space of just a few months, the gregarious 18-year-old had become so severely brain damaged that she was unable to move or communicate.
Eight years on, Holly has to be fed through a tube into her stomach and shows no emotion or awareness of her tragic predicament. Her days are spent in heartbreaking, silent immobility.
Holly is one of only three people still alive after developing the full-blown symptoms of Creutzfeldt–Jakob disease (also known as new variant CJD, or vCJD) — the human form of mad cow disease.
Holly’s parents Peter and Linda, both 61, are devoting themselves to their daughter’s full-time care and to a programme of daily mental stimulation, in the belief they are keeping her brain alive until a treatment emerges that will help her.
While they and their three older children live in hope of a cure for Holly, there is growing concern that another CJD outbreak may be imminent.
New evidence collected by the Health Protection Agency (HPA) suggests that one in 4,000 people who were eating meat before 1996 is probably carrying CJD (after that date, cattle infected with mad cow disease were, theoretically, removed from the food chain).
That could mean that as many as 15,000 people nationwide could be affected. While this is in line with a previous survey, the latest findings suggest CJD might be more prevalent in older people.
The findings — which received little publicity when published a few weeks ago — are mid-way results of a programme testing 30,000 samples of tonsil and appendix tissue removed during routine operations across the country.
The aim was to look for evidence of ‘silent’ or symptom-free infection, though scientists admit the method used in the tests cannot identify CJD with total accuracy.
Until recently, a definite diagnosis of the disease in people who have the symptoms could be made only after death, because brain tissue analysis was required.
Holly with her mother Linda, who is devoting herself to her daughter's full-time care and to a programme of daily mental stimulation
However, John Collinge, a professor of neurology and a leading expert at the Government’s CJD research unit at University College, London, has developed a blood test which can check if the disease is present by detecting evidence of the so-called prions or infectious proteins known to cause the disease.
He believes the number of people infected could be as high as one in 1,000 and says the CJD situation is ‘very worrying indeed’.
So far, there’s little official interest in investing the several million pounds needed to turn the blood test into the high-speed screening tool needed to bring it into routine use. Critics say this is because the Government fears what it might find.
Mad cow disease, or bovine spongiform encephalopathy (BSE), first emerged in Britain in 1986 as a result of ‘cannibalism’, when beef offal was fed to cattle, which are natural grass-eaters.
The proteins, called prions, that cause BSE were found in large quantities in the brains, spinal cords and spleens of cattle (although they were also subsequently discovered in meat tissue, too). When animal carcasses were ground down to form feed stuff for other cattle, prions were passed on.
They then colonised the brains of the cattle which ate them, and were passed to humans via cheap, mechanically-recovered meat — such as processed sinews and offal that were used at the time in school dinners and baby food.
In humans, the prions triggered the development of a new form of fatal human dementia called new variant CJD, which was first identified in 1996. These prions are entirely new infectious agents, completely different from viruses, bacteria or parasites.
Basically, they are faulty versions of healthy proteins in brain and nervous tissue that then induce their neighbours to become faulty. As a result, the brain cannot function: all signals are disrupted or shut down completely, leading to almost certain death.
Holly was a lively teenager about to start university, but now her days are spent in heartbreaking, silent immobility
A ban on using animal remains in livestock feed was imposed in 1989, and 4.4 million cattle were slaughtered to eliminate the disease. At the same time, a ban was imposed on the use of mechanically-recovered meat in products for human consumption.
By the mid-Nineties, when CJD fears were at their height, up to 3.5 million people were believed to possibly be affected. The risk appeared to be greater in younger people, although the reason isn’t clear.
But as new cases failed to materialise (according to official statistics, 168 people have died from CJD in the UK), the view of the Government and medical establishment was that the danger had passed.
However, the new data from the Health Protection Agency suggests the rate of infection is much higher than currently thought.
‘We do not know how many infected people there are or how many of them will develop it,’ Professor Collinge says.
‘The incubation period, where there are no symptoms, can last for decades.’
But it is not only the threat of a widescale re-emergence of the infection that worries experts. There is also the possibility of a new generation being exposed to the disease, as a result of a European Union decision to change the rules on animal feed.
Although CJD emerged from beef, experts say there is evidence of related diseases affecting other meat-producing animals if they are forced into cannibalism
Contrary to popular belief, BSE has not been wiped out. In fact, 11 cattle were diagnosed with it in Britain last year, although none entered the food chain.
Most young cattle slaughtered for meat are not believed to have developed sufficient infectivity to pose a risk to humans. Any animal more than 30 months old destined for the food chain is checked for BSE after it has been slaughtered.
The new concern is not cattle, however, but pigs and chicken. Earlier this summer, the European Commission announced it was relaxing the ban on using animal remains in livestock feed.
From next year, chicken meat will be used in pig feed and vice versa, to cut costs for farmers who otherwise have to rely on expensive imported soya beans for growth-promoting protein-based animal foods.
Although CJD emerged from beef, experts say there is evidence of related diseases affecting other meat-producing animals if they are forced into cannibalism.
Now a group of CJD-affected families, led by former Labour health secretary Frank Dobson, is to challenge the Government to hasten the development of the new blood test to give people the chance to check if they are infected.
The proposal has been given added urgency by the latest findings about CJD-infected tonsil and appendix tissue, but the Government has been dragging its feet, says Mr Dobson.
‘The projections I was given when I was health secretary in 1998 were that the total number of CJD cases could be anything between a few hundred and 3.5 million people,’ he said.
‘Until now, the only certain way of diagnosing CJD in people who have not yet developed symptoms is to analyse tissue after death.
'Trials show John Collinge’s blood test works, but it needs investment to turn it into a proper screening tool that can quickly deal with a high volume of blood samples.
‘You would have thought the Government would want it to test blood supplies and get an accurate picture of how many people are infected. I can’t understand why they’re not getting on with this.’
Anxiety about CJD transcends party boundaries, with Tory MP Sir Paul Beresford joining Mr Dobson’s cause.
The reason Holly and the other two surviving CJD victims are alive is probably because their families fought court battles to be allowed to give them pentosan polysulphate
‘We need to find out the extent of the problem and what we need to do about it,’ he said.
‘Otherwise we will potentially see a flood of cases in our grandchildren.’
The parents of Holly, from Thornton Dale in North Yorks, are among those backing the campaign. ‘It’s too big an issue to ignore,’ said Peter Mills.
‘The evidence suggests there will be a second bout of this infection and we need the measures in place to test blood. There is clearly a risk from infected people who have no symptoms. Even if they don’t develop the disease, they can pass it on.’
Normal sterilising techniques do not remove the abnormal proteins which cause CJD from surgical or dental instruments because they survive high temperatures.
There have been at least six transmissions from hospital operations and four cases of CJD infections passed from three different blood donors. All those infected in these ways have died.
In the meantime, Peter and Linda are fully engaged in caring for their sick daughter. When she was diagnosed with the disease aged 18, she was within weeks of leaving home to study midwifery. In fact, her symptoms had been emerging over the previous two years.
At first the family put her fatigue and anxiety down to teenage depression. She had fainting fits two or three times at school when she was 16, but her GP assumed she would grow out of them.
But when Holly began losing weight and having difficulty walking, her parents realised something was wrong.
Her condition quickly worsened, but the CJD diagnosis — based on ruling out everything else — was a dreadful shock.
‘We were devastated,’ says Peter. ‘We think she caught it from the mechanically-recovered meat they used to put in baby food.
'Once Holly became ill, it all happened very fast. Within a few weeks of the diagnosis she couldn’t walk or talk. We treat it like a head injury.
‘We want to stimulate her as much as possible. We talk to her all the time and, although she doesn’t respond, we are convinced she still has some functions.’
Every morning, a system of hoists and pulleys allows Linda to transport Holly from bed to a specially-built bath tub. Once she is washed and dressed, the three embark on an outing into the countryside. Come rain or shine, Holly’s parents guide her wheelchair along the cliff-top paths in the nearby seaside resort of Scarborough, or through the elegant surroundings of one of the local National Trust mansions.
The reason Holly and the other two surviving CJD victims are alive is probably because their families fought court battles to be allowed to give them pentosan polysulphate, an experimental drug currently unlicenced in the UK, injected into the brain which seems to prevent the final stages of the disease.
What lies ahead for Holly and the thousands of other CJD carriers remains to be seen. Campaigning with Frank Dobson, Sir Paul Beresford and the Mills family is Christine Lord, from Southsea, Hampshire, whose son Andy, a radio sports commentator, died aged 24 from CJD three years ago.
Other experts believe up to 60,000 could be affected
‘In one of the last conversations we had, Andy asked me to find out how he got ill and I promised I would,’ says Christine, a BBC journalist who is writing a book about what she believes has been a political cover-up of the extent of the CJD risk.
‘I want to know where this came from. I stopped him eating beef from the age of six because of BSE, but he still got the disease.’
She is organising a protest next month to demand access to the blood test.
‘I think the Government doesn’t want the test out there because of people finding out how prevalent CJD is,’ she says.
A spokesman for the NHS Blood Service said it was in talks with Professor Collinge about using his test to screen the 7,000 blood donations collected daily across the country, but could not say when the work would be done to develop a tool capable of bulk screening.
‘We are spending £40
million a year on a process to remove white blood cells and £200 million a year on synthetic blood-clotting factors to minimise the risk of CJD transmission via blood,’ she told the Mail.
Professor Collinge says blood will certainly already have been donated by infected donors.
‘I think the possibility of a lethal infection in one in 4,000 blood donors is very worrying. People wouldn’t accept that level of risk if it was HIV.’
The Government’s experts have extrapolated the Health Protection Agency’s data and suggested at least 15,000 people are carrying CJD, though they agree the exact figure is unknown and other experts believe up to 60,000 could be affected.
Meanwhile, Azra Ghani, professor of infectious disease epidemiology at London’s Imperial College, says the potential harm from symptom-free CJD carriers is impossible to predict.
‘It’s a waiting game with any new infection. We just don’t know if these people will be infectious or not.’
Read more: http://www.dailymail.co.uk/health/article-2055904/Could-face-return-CJD-Experts-fear-lie-dormant-thousands.html#ixzz1cToJn3mU
Thursday 27th October 2011
Experts in prion disease all agree that the ‘ Easiest way to transmit the rogue prions that cause vCJD is intravenously via blood.’
At its recent meeting SABTO (Safety of Blood Tissue and Organs) a committee who make recommendations for policy to the UK Government, discussed patient consent regarding blood transfusions. This is some of the discrepancies they found:
Patient consent for blood transfusion
BACKGROUND
It is a general legal and ethical principle that valid consent should be obtained from a patient before they are treated. The General Medical Council (GMC) has published guidance on consent (Ref 1). The 2000 NHS Plan pledged that informed consent must be sought from all NHS patients and research subjects (Ref 2). To help achieve this the Department of Health set up the Good Practice in Consent initiative and published a national guidance framework for consent (Ref 3). However, as blood transfusion is often an additional procedure during a course of treatment, there was no specific guidance given for blood transfusion.
Audits presented to SaBTO have identified that the practice of obtaining any form of valid consent for blood transfusion is highly variable in the UK. This was also confirmed by the European Blood Alliance in a survey of its members in 2008 on “Consent to transfuse” (unpublished).
The following issues have been identified by SaBTO:
· Patients are not always given information on the risks, benefits, and alternatives to transfusion, or the right to refuse transfusion.
· Patients are not always made aware that they have received a transfusion.
· Patients who are unaware that they have received a transfusion may go on to donate blood when they should not.
· There is inconsistent practice across the UK.
These inconsistent practices throughout the UK cause anxiety, concern to not only patients but also to nursing staff and health professionals. It also highlights just how many people may have received a blood transfusion without their knowledge. These patients could then become blood donors and risk re-cycling blood contaminated with the rogue prions that cause vCJD.
Many nursing staff who I have interviewed have been unaware of the dangers of vCJD and blood and the risk of contamination via hospital equipment and procedures. Even more health professionals I have talked to were unaware that all UK blood bags and blood products contained the disclaimer:
‘RISK OF ADVERSE REACTION INFECTION INCLUDING VCJD’.
Patients should be made fully aware of the risk of vCJD via blood but also ‘any consent’ signed by individuals about to receive blood should not be discriminatory or legally binding. Any consent form or paperwork must always have the patient’s health and well being paramount not the legal department of the DOH.
Wednesday 19th October 2011
Regular readers of this blog and the many media articles to which I contribute about BSE/vCJD will known that I remain open to the source of my Andrew’s infection.
I continue to investigate and gather evidence regarding What Killed my Son? and Who Killed my son? I realise over the years many ‘red herrings’ have been sent my way and the public are being continually fed ‘ half truths and lies’. It has become my mission to filter out these false leads and approach my research in a manner that remains open but not easily led.
What is a certainty is what killed those emaciated BSE cattle killed my son.
But as one scientist said to me ‘cows were the canaries in the mine not the source’.
This and other questions are being addressed by myself and group of researchers.
I remain open to all theories but am now sufficiently skilled to know when I am being manipulated and moved across the political chessboard.
What killed those BSE cows killed my son without doubt, I nursed my son and have also witnessed cattle dying of BSE, they mirror each other to a frightening degree.
Experts say school dinners and baby food were the source of so many young people developing vCJD…….I believe the UK government ministers such as John Gummer and Kenneth Clarke and within the corridors of Whitehall that the truth is known but its being kept under lock and key.
Was it an accident in a lab? Biological warfare experiment which entered the food and medicine chain? All of these theories and much information has come into my hands. Or was my son just so unlucky that despite not eating beef or beef products for over 18 years he died of vCJD by some stray meal he had when he was just 5 years old?
Below is part of an article from the Times written in 2008 and though three years old it raises many challenging questions. Not least that experts have admitted it is very difficult to transmit the rogue prions that cause vCJD orally, and that intravenous route via vaccines or from animals scratching or biting a human is a much easier way to transmit the deadly disease. Is this why so many vegetarians, Sikhs, Hindus have died of vCJD despite not eating any part of the cow? Was it a scratch from a cat, dog, animal or a vaccine produced from BSE infected herds?
What must be made clear is that I do not agree with the articles claims that its safe to feed cattle or any animal the ground up remains of animal carcasses. This is medically and scientifically lethal to human health. All sorts of deadly animal diseases can be passed onwards to humans by this practice. It’s morally, ethically and scientifically wrong, for animals who are vegetarians and for human health.
. Greed of huge corporations and governments caused BSE and vCJD and the same greed leaves millions of people starving. The answer is not in feeding aminals MBM but it readdressing the vast wealth that sits in the coffers of a few……
The Times article is written from a passionate stance regarding the millions of people who are starving across the world, this has caused a partisan approach to the subject.
Nevertheless I leave you the reader to ponder on some of the many questions raised.
With this blog is a photo of Kate Richer from Gosport, Hampshire, UK who died of vCJD aged 22, she loved animals and here is a picture of her helping out on a farm during a family holiday.
The Times 2008
BSE, vCJD and the moral maize
Feeding animal remains to beef cattle has become an ethical, not a scientific, question
Magnus Linklater
In a world gripped by fears about the price of food, climate change
and the threat of epidemics, we have to trust the scientists. Unless
they tell us the truth, what certainties are there? Which is why the
story of BSE is such a disturbing one. It's hard to remember now the
feeling of national panic created back in 1996, when the first
evidence emerged that “mad cow” disease might be transferred to human
beings. The fear of a variant form of CJD which could lead to
degeneration of the brain as a result of eating infected beef became
widespread after the Government admitted that the public had not been
told the real facts.
It had apparently concealed evidence suggesting that an infectious
agent known as a prion, discovered by the Nobel prize-winning
scientist Stanley Prusiner, might be the cause of BSE and, in turn,
might pass on a human form of the disease. Professor Prusiner's
conclusions were summed up by him in two devastating sentences: “It is
thought that BSE is a result of cannibalism in which faulty industrial
practices produced prion-contaminated feed for cattle. There is now
considerable concern that bovine prions may have been passed to
humans, resulting in a new form of CJD.”
DEAD CATTLE SHOULD NOT BE FED TO CATTLE FOR ETHICAL, ANIMAL WELFARE
REASONS, AND FOR FOOD SAFETY REASONS SUCH AS THE WORLDWIDE INCREASE IN
SCJD.
That claim led to some frightening headlines, and destroyed the
reputation of at least one minister, when John Gummer was photographed
feeding his daughter with a beefburger to demonstrate that it was
harmless. On the contrary, said the Chief Medical Officer in England,
Professor Sir Liam Donaldson, a major epidemic could not be ruled out;
he told people to prepare for “thousands” of cases of vCJD. Professor
Hugh Pennington, a leading expert in food safety, was quoted as
saying: “We are not going to know for several years whether the size
of the epidemic will be a small one - in other words in the hundreds -
or a very large one in the hundreds of thousands.”
Swayed by warnings like this, Europe swiftly banned all Britain's beef
exports, and the Government made it illegal to use animal-based feed
for cattle. A programme of slaughtering “at risk” animals was
introduced. The theory that BSE could be transmitted in human form
still dominates official attitudes to food safety, and remains the
accepted view of the scientific establishment. To this day no one
openly challenges the prion theory.
THE ‘ORAL ROUTE’
IS AN INEFFICIENT WAY OF TRANSMITTING THE DISEASE
The CJD surveillance unit in Edinburgh has recorded only 115 confirmed
cases from vCJD in the past 14 years, with none of them establishing a
clear connection with eating beef.
THE CJD UNIT’S FIGURES UNDER-REPORT VCJD
The total for CJD in general is 1,302,
IF SCJD AND VCJD ARE SIMILAR THEN, IT MAY BE SENSIBLE TO ADD THE SCJD
AND VCJD FIGURES TOGETHER.
but again there is no proven link with meat consumption.
THE LINK IS AN INEFFICIENT ONE. IT IS ‘MRM (CATTLE BRAIN)
CONSUMPTION’ NOT ‘PROPER MEAT CONSUMPTION’.
The connection that Professor Prusiner claimed to have demonstrated
between cattle fed with animal products and outbreaks of BSE is
tenuous at best.
THE DISEASE IS BEING HARBOURED OR CARRIED.
Yesterday, as The Times reported on its front page, the chairman of
the European Food Services Authority said that the time had come to
review the policy that forbids the feeding of cattle with animal
products - such as the remains of pigs or poultry. Patrick Wall made
the point that it was neither morally nor ethically correct to
continue feeding precious grain to animals in the midst of a global
food crisis. “Soya meal and other grain prices are going through the
roof,” he said. “Is it morally and ethically correct to be destroying
this food when people are starving? No one I know is worried about the
science. There is only consumer reaction.”
PEOPLE ARE STARVING PARTLY BECAUSE TOO MUCH OF THE WORLD’S FOOD
RESOURCES ARE BEING FED TO ANIMALS.
He is right. It is a moral issue. The only reason the ban remains in
place is the natural distaste of those who dislike the Prusiner image
of “cannibal” cattle. Yet scientists are there to rise above popular
prejudice and tell the truth as they see it.
THE THEORY OF ‘AN ORAL BSE-CJD LINK’ WOULD BE BETTER DESCRIBED AS
‘INEFFICIENT’ RATHER THAN ‘MISLEADING’.
Scientists in the field of neurology or molecular biology cannot
continue subscribing to a bankrupt theory when there is no proven
evidence to sustain it.
THERE ARE MANY PAPERS TO SUSTAIN IT (THE PRION THEORY).
They should tell us, and the politicians, that the BSE-vCJD theory
cannot in all conscience be sustained any longer,
THIS ARTICLE IGNORES MORE EFFICIENT ROUTES FOR THE TRANSFERAL OF
BSE-CJD I.E VIA VACCINES OR BY ANIMALS CAUSING SKIN SCRATCHES.
and that the maize being fed to cattle should be used for its original
purpose - to feed the starving of the world. Otherwise we will simply
have to add them to the growing list of those in authority who no
longer command our confidence.
THIS CYNICISM IS UNFAIR AS THERE ARE SCIENTISTS WHO HAVE EXPLAINED THE
BSE AND CJD LINK
http://www.timesonline.co.uk/tol/comment/columnists/magnus_linklater/article4061213.ece
From The Times
June 3, 2008
Saturday 15th October 2011
On Tuesday 11th October 2011 at 10am SABTO (safety of blood tissues and organs) the committee who gives recommendations to the UK government, held their 4th public meeting, at Skipton House, Central London. .
I have attended all the public meetings held by SABTO but this time I only found out about the event the day before from a supporter of the campaign. I was visiting a family affected by vCJD.so could not attend.
All of SABTO’s public meetings have never been properly promoted which has meant most of the UK population are unaware and therefore excluded from its ‘public meetings.’ This is due to lack of information and also financial/physical constraints attending a meeting so early in the morning.
The meeting was to discuss ‘PATIENT CONSENT TO BLOOD TRANSFUSION’
Its chair Professor John Forsythe, Chief Medical Officer Sir Bruce Keogh and many other experts in the field carried out this meeting with a handful of the public present. SABTO also held secret meetings before and after the event.
This exclusion and not informing the public via correspondence, press, text, or phone has meant significant guidelines and recommendations have been presented to the UK Government regarding ‘Blood safety’ without challenge or questioning from the ordinary man or woman in the street, the ones that will be receiving blood transfusions in the near future. These far reaching decisions are being made which will affect the health and safety of every UK citizen.
Patient safety and transparency should be paramount whereas this lack of inclusion hints at a ‘closed shop.’ The majority of the audience is always filled with experts, organisations, and members who are salaried, funded or fee’s paid by the UK Department of Health or subsidiaries.
I am very challenging at these meeting whereas the few members of the public invited (Expenses paid) are cherry picked to represent government policy. During the last public meeting I stood up and complained at the lack of public awareness of the meetings, disability discrimination because of the venue time and location and also the fact I had recorded many of the experts present funded by the UK Department of Health crowing about their top class hotel, breakfast, flights and dinner all paid for by the UK taxpayer.
My observations were dismissed by John Forsythe and I was ignored by every expert in the room throughout the public meeting and during refreshments before and afterwards.
As a bereaved mum and representative of the public I at least deserved acknowledgement and a hallo. My questions and concerns about vCJD and blood were not addressed or answered fully; once again I was swatted away like a bothersome fly. This is no way to treat a member of the public but this is the attitude I continue to receive from public servants who are the puppets of the DOH.
This 4th meeting of SABTO was significant and of importance to every resident in the UK as it was discussing the safety of blood transfusions and what patients should be told and how consent can be achieved.
VCJD is a hot topic and behind the scene’s Government lawyers are working on’ get out clauses’ so that litigation can not be pursued if a person becomes infected by vCJD via blood. What SABTO discussed during, before and after the meeting should be available to everyone in the UK and yet the audience at this ‘4th public meeting’ contained just a handful of people not paid to be there!
As a mum who has lost her son to vCJD I have asked repeatedly to be informed by letter, email or telephone about SABTO meetings and have asked for all families affected and haemophiliacs and patients ‘at risk’ of vCJD through blood/blood products invited to the public meetings as matter of courtesy.
To: '
michelle.haywood@dh.gsi.gov.uk'
Subject: sabto public meeting
Dear Michelle Haywood,
COMPLAINT ABOUT PUBLIC MEETING AND FAMILIES NOT BEING INFORMED
I have attended sabto meetings for the last few years as I lost my only son Andrew Black to vCJD the human form of BSE aged just 24 years old. One of the easiest ways to transmit ‘the human form of mad cows disease’ is intravenously through blood donation.
I was shocked to find that the public meeting regarding ‘patient consent for blood transfusion’ and its details were not emailed to me and other families who have lost loved ones to vCJD. We had no idea of this public meeting as has the general public…once again the meeting no doubt will be full of experts and just a few cherry picked members of the public that are not challenging to government policy or DOH strategies.
We believe that campaigners like ourselves who are challenging and with a clear voice are being deliberately excluded from these meetings because we are not funded by the DOH, our salaries are not dependant on government agencies for funding so we are honest, transparent and verbal.
I had a good relationship with the last secretary of SABTO Mike who assured me that once he left post that all my details would be passed onwards and I would be kept informed of all the meetings and events via my email address, I have emailed on several occasions asking for details of coming events.
This is yet another request to be kept ‘in the loop’ and up to date on coming meetings both public and private that SABTO will be holding.
Please note my email address and postal address which is 2 Wilton Terrace, Southsea, Portsmouth PO5 2BQ.
I also challenged John Forsythe at the last meeting that 10am meetings make them prohibitive financially and physically for many members of the public who have to get to London at such an early start to their day, cost of transport is usually double that during other parts of the day. Also one of the first meetings was held at 2pm why has this changed?
And it doesn’t help to hear the experts talk about their ‘first rate hotels breakfasts dinners and flights ‘. that they are enjoying on expenses whilst poverty stricken members of the public living with ‘vCJD’ due to contaminated blood transfusions and bereaved families can barely afford the train fare to the meetings. I have recorded these conversations during my last attendance at these meetings.
I would like my concerns to be minuted as often my challenges are not even mentioned.
I will be raising my concerns within the Houses of Parliament.
Yours sincerely,
Christine Lord
Monday 10th October 2011
My friends and contacts in South Korea have told me that school meals in Seoul will now hopefully be safer. This is down to the pressure that NGO’s and parent groups have put upon the government locally and nationally.
Mayor Oh Sehoon resigned in August and there is a by-election on October 26th . The two main democratic parties have received a groundswell of public support over their support of free and safe school meals. USA beef was banned from South Korea in 2003 but in 2008 despite many protests the ban was lifted.
As readers of this blog will know there is a trade agreement between the USA and South Korea which saw ageing US cattle over 24 months and not being tested for BSE being shipped to South Korea to be used in school meals, hospital food and to feed the military.
During my trip to South Korea and since, NGO’s and parent groups/co operatives and the concerned public have campaigned for the USA beef not to be used in mandatory school meals and food for the military.
Koreans are hopeful that one of the two leading parties the Democratic or Park Wonsoon a human rights lawyer and famous NGO activist will defeat the largest opposition group the Conservative National Party.
In South Korea national service is mandatory and also school meals both these services have been flooded with MRM mechanically recovered meat from the ageing USA cattle. What was seen as unfit ‘For human USA consumption’ was deemed by the US senate and the Conservative Korean Government as ok to feed young and vulnerable South Koreans.
The US received more dollars for their beef exports to South Korea than any other country in Asia including Japan.
One of the reasons for my trip to South Korea was to make sure that the same lies and cover-ups that caused, created and allowed BSE here in the UK didn’t happen in South Korea. I wanted to support other families and parents and make sure they didn’t suffer the heartbreak I do every day. With this blog is a photo of me and my interpretor Sean outside the Korean Assembly.
My friends in Seoul are hopeful for a positive outcome of the by-election.
The trade agreement between the USA and South Korea is about money the US Senate shipping ageing beef to South Korea makes millions of dollars for the US economy whilst the South Korean Conservative Government and its agencies count overflowing coffers of cash. In the same way the UK Conservative Government in the 1980s and 1990s put the beef industry and profits before my Andrew’s life and future, this is whats been happening in South Korea.
I await the by-election results with a hopeful heart and wish all my friends, fellow campaigners, activists and South Koreans and their families health and happiness and success in their fight to protect their children.
Wednesday 5th October 2011
I urge you to watch this report ( see link below) about Holly Mills the longest survivor of vCJD and her parent’s pleas for research to continue into the horrific brain wasting disease that has killed so many. Experts are warning that ‘One in a thousand of the population may be carrying or incubating the disease’, and yet the UK Government and Department of Health are cutting back in every area of vCJD research. This has nothing to do with recession and everything to do with the Conservative led government trying to obliterate any evidence and research that will point the finger at those responsible for BSE and its human lethal pathogen vCJD.
Another young person has recently been diagnosed with vCJD in the Gloucestershire area born in 1984 this young man would be roughly the same age as my Andrew, my thoughts and prayers are with this devastated family. VCJD continues to kill on a regular basis and lurks in the corner waiting to pounce on its next innocent victims…..
CJD ... - Tyne Tees Regional News | North East Tonight - ITV Local
The official ITV home of North East Tonight (ITV Tyne Tees) on ITV Local. Includes Local Regional News, Meet the Team, Full Programme Catch Up & Tyne Tees ...
www.itv.com/tynetees/cjd-research-campaign55359/
Friday 30th September 2011
During BSE the then Prime Minister Margaret Thatcher sacked over 1,000 agriculture and animal scientists. Now David Cameron’s government continues the cover-up with the closing of eight veterinary labs. Many of these labs were involved testing of BSE cattle during the earliest stages of the disease, they also carry out extensive work regarding animal health and its impact on humans.
Since the Conservative led government took office, many other departments, laboratories and groups have been disbanded, terminated and closed connected directly or indirectly with BSE/vCJD.
David Cameron and his government are determined to hide, conceal and destroy any evidence of Thatcher/Majors wrongdoing during BSE and in doing so put future generations of animals and people at risk. BSE and its human lethal pathogen vCJD has not gone away and remains a significant ‘ticking health timebomb’ for every member of the UK population.
EIGHT VETERINARY LABS WILL CLOSE, DEFRA CONFIRMS
Plans to strip more than half of the UK’s regional veterinary centres of their laboratory facilities were confirmed today (Friday) by the Department for the Environment, Food and Rural Affairs.
Laboratory services at eight of the 14 regional centres run by the Animal Health and Veterinary Laboratories Agency will close over the next two years after Environment Secretary Caroline Spelman gave the go-ahead to plans drawn up by the AHVLA.
The labs affected are at Langford (Bristol), Thirsk (North Yorkshire) and Truro (Cornwall) all by April 2012; and at Aberystwyth (Dyfed), Carmarthen, Luddington (Warwickshire), Preston (Lancashire) and Winchester (Hampshire), by April 2013. Veterinary surveillance staff at the centres will in future have to send samples for testing to one of the remaining regional or central AHVLA laboratories.
Prospect National Secretary Geraldine O’Connell said: “This announcement bears out our worst fears for the future of the laboratories, and we remain concerned about the long-term impact on the future of the laboratory sites themselves.
“We will argue strongly that AHVLA must retain all the laboratory sites affected by these closures in order to maintain appropriate veterinary surveillance at local and regional levels. We are particularly worried about the situation in Wales, which will be left without a single lab and where we will be making strong representations to the Wales Assembly for the retention of the necessary facilities.”
A further report by AHVLA called The Veterinary Surveillance Review is due at the end of October which is likely to be crucial in determining the long-term fate of the regional sites.
Veterinary science laboratories are responsible for ‘animal specific’ health testing, which includes the early diagnosis of diseases such as bovine TB and swine fever, as well as a range of other laboratory services including haematology, microbiology and biochemistry.
Defra claims the closures would save £2.4m a year. But Prospect, the union for scientists and specialists in the agency, says that figure is dwarfed by the potential costs of failing to detect promptly a serious outbreak of any animal disease.
Ninety scientists and laboratory staff would lose their jobs under the proposals, said O’Connell. “That’s one in three of all laboratory staff employed in AHVLA’s regional network. The country cannot afford the loss of so many skilled laboratory staff or the reduction in testing facilities.
“The review accepts that the demand for laboratory services will not change and that these cuts rely wholly on the remaining laboratories taking on their work.”
Monday 26th September 2011
http://www.guardian.co.uk/commentisfree/2011/sep/19/vcjd-blood-test-trials
We need to know the truth about vCJD numbers
It's estimated that one in 4,000 people are unknowingly infected. The government must authorise trials of a new blood test.
Frank Dobson
guardian.co.uk, Monday 19 September 2011 11.06 BST
Article history
'The prions that cause vCJD can lie dormant for decades and people who are infected pose a risk to others if they are blood donors.' Photograph: Toby Melville/Reuters
The government's expert advisers assume that as many as 15,000 people in this country are infected with the prion infection agents that cause the lethal brain disease,
variant Creutzfeldt-Jakob (vCJD), the human form of BSE or "mad cow disease". The experts don't know if this is the right figure. It could be a lot higher but ministers are refusing to fund trials of a new test to find out.
So far just 200 of our fellow citizens have developed the disease. But the prions that cause the disease can lie dormant for decades and people who are infected pose a risk to others if they are blood or organ donors, or if surgical instruments used on them are then reused on other patients.
The
Medical Research Council Prion Unit at the UCL Institute of Neurology, led by Professor John Collinge, was set up at my behest to come up with ways to treat vCJD and, better still, prevent it. They were also asked to devise a test to identify vCJD in the general population. They recently announced a new blood test that does just that. This is a great breakthrough. It should enable our doctors and scientists, for the first time, to assess accurately the incidence of vCJD infection so policy decisions on how best to protect patients can be based on evidence, not guesswork.
As health secretary, the day I became aware in 1998
that it might be possible to transmit vCJD by blood and blood products, I got the experts together. Their advice was that infection through blood and blood products was likely but not certain and that the infection, if any, would probably be carried in the white blood cells. "What should we do?" I asked. The answer for the blood supply was leucodepletion (removing the white cells) at a cost of £100m. When I told Tony Blair that I'd authorised spending this £100m but hoped it would prove to be a waste of money, his response was "fxxx me". The blood for a transfusion usually comes from just a few donors but blood products come from many more donors, so the chances of infection were much greater. I had to agree that we should end UK sourcing of blood products – easier said than done.
At the time these decisions had to be taken, there was no way of assessing how many people might be infected. Officials produced "computer projections", ranging from fewer than 200 vCJD fatalities to 3.5 million. These were no more than guesses. I authorised testing of tissue samples from tonsils and appendixes which eventually produced some data which was a little bit more reliable but not much. And so it has continued to this day. In their current risk assessment, the Department of Health assume that 15,000 people (one person in every 4,000) are infected but don't know.
So largely on the basis of the precautionary principle, no less than £540m has been invested since 1998 to try to protect the integrity of blood supplies and blood products. The current annual cost is over £40m plus £200m a year to supply synthetic clotting factor for the treatment of bleeding disorders.
With so many lives possibly at stake and so much money being spent, the new blood test offers the prospect of certainty for the first time. The researchers want the government to authorise trials of the new blood test so we will know how many people are likely to be infected with vCJD. Things may turn out to be better than expected or may be worse. But at least we will know and will be able to tailor the precautionary measures to the scale of the problem. That in turn may raise ethical problems about advising patients believed to be infected with vCJD until there is a treatment. Fortunately the work carried out by the Prion Unit has made such progress that doctors may soon be able to inhibit the development of vCJD, ultimately to cure it and, better still, prevent it – along with other degenerative diseases of the brain, possibly including Alzheimer's. Sadly, so far, the government have refused to authorise and fund the trials. They prefer to continue to remain in ignorance.
Wednesday 21st September 2011
An article in the Sunday Times page 13 (NEWS) By Lois Rogers headlines
‘60,000 MAY HAVE HUMAN VARIANT OF MADE COWS DISEASE’
Sunday Times 18/09/2011
On page 13 of The Sunday Times, an article was published on vCJD prevalence stating that more than 60,000 people over the age of 15 may unknowingly have vCJD.
"The statistics emerged from a project to test 30,000 appendixes removed in operations between 2000 and 2011. In interim findings on 13,878 samples (published by the health protection agency) four vCJD cases were identified - an infection rate of 288 cases per million."
"...If the predictions are correct, one in 867 of the remaining population of 51.2m could be infected."
"An earlier study, published in a neurology journal, found the chemical analysis employed might identify only a quarter of cases..... raising the possibility of true infection nearer to 1,152 per million."
John Collinge, professor of neurology at University College London and former member of SEAC, said it was not known how sensitive to the test vCJD was during incubation but blood donors would almost certainly have included those with the disease. He said: "I don't think people would accept that level of risk of being infected with HIV or Hepatitis. I am surprised this finding has not triggered more action." (end of quotes)
The paper published by the HPA highlights the ‘ticking health time bomb’ that everyone who has been exposed to BSE faces in the coming weeks, months and years. Yet this significant research has not made the headlines as Whitehall spin and their medics offer ‘false reassurances’ in the same vein as John Gummer and Kenneth Clarke told us ‘British beef is safe to eat and BSE is not dangerous to human health’.
The DOH are already aware of ‘asymptomatic blood donors’ who remained well but have infected their individual recipients with vCJD. Tens of thousands of the UK population may be infectious to other people during routine surgery, dentistry or blood donation.
I fear that it will not be until hundreds more have died of vCJD that the correct precautions will be implemented to protect public health.
Friday 16th September 2011
With this blog is a photo of me taken at Pitsham Farm, West Sussex, UK where BSE first started.
Calcutta India, case of vCJD
An Unusual Case of Memory Decline
Bangalore
New variant Creutzfeldt-Jakob disease (nvCJD) is an acquired prion disease causally related to bovine spongiform encephalopathy that has occurred predominantly in young adults. All clinical cases studied have been methionine homozygotes at codon 129 of the prion protein gene (PRNP) with distinctive neuropathological findings and molecular strain type (PrP (Sc) type 4). Modeling studies in transgenic mice suggest that other PRNP genotypes will also be susceptible to infection with bovine spongiform encephalopathy prions but may develop distinctive phenotypes. New variant Creutzfeldt–Jakob disease (vCJD) was first identified in the UK in 1996, and was causally linked to bovine spongiform encephalopathy. Initially misnamed as ‘mad-cow disease’ it went as a taboo with beef eaters. However it has been identified as a prion disease with dissimilarities with classical CJD both clinically and radiologically throughout the world. Herein we report a case of possible nvCJD from India.
A 64-year-old man, Islam by faith, who had lived throughout his life at Calcutta, India. Presented with sub acute onset and progressive depression, irritability, personality change. He was first assessed by psychiatrist and antidepressants failed to arrest the course of illness. The clinical features extended to cause gait ataxia and cognitive impairment which made him seek neurological consultation. His initial MRI of the brain revealed minimal signal alterations around the thalami and he had a normal EEG. Routine blood reports were normal except marginally raised liver enzymes. However he continued to deteriorate and by 3 months he needed support for his Instrumental activities of daily living. He had by then developed myoclonic jerks in generalized fashion. This time EEG did show the typical appearance of periodic complexes with a much slower background. His CSF study showed raised protein and normal sugar with mild Lymphocytic pleocytosis. However PCR for Tb was negative and fungal smear was also negative. Brain magnetic resonance imaging this time revealed high signal lesions involving bilateral caudate nuclei, left lentiform nucleus, bilateral dorsomedial thalami and pulvinar on fluid attenuation inversion recovery, T2- and diffusion-weighted imaging. The patient developed a kinetic mutism at 4 months and now after 6 months remains vegetative, completely bedbound. Presently she remains on Clonazepam, Sodium valproate and supportive care.
The clinical presentation and neuroimaging findings were compatible with the nvCJD cases reported since 1996 for probable nvCJD. A human disease thought due to the same infectious agent as bovine spongiform encephalopathy (BSE), or mad cow disease. Both the human and bovine disorders are fatal brain diseases with unusually long incubation periods measured in years, and are caused by an unconventional transmissible agent, a prion, resulting in the deposition of amyloid tissue that causes a breakdown of brain tissue leaving the infected brain with a “spongy” (“spongiform”) appearance. The disease in humans is sometimes called variant Creutzfeldt-Jakob disease (nvCJD). The BSE agent has been identified in the brain, spinal cord, retina, dorsal root ganglia (nervous tissue located near the backbone), and the bone marrow of cattle experimentally infected with this agent by the oral route. In addition to cattle, sheep are susceptible to experimental infection with the BSE agent by the oral route. Thus, in countries where flocks of sheep and goats may have been exposed to the BSE agent through contaminated feed, there exists a theoretical risk that these animals may have developed infections caused by the BSE agent and that these infections have been maintained in the flocks, even in the absence of continued exposure to contaminated feed (for example, through maternal transmission). Everyone with nvCJD appears to have eaten beef and beef products at some time during their lives (but then so have most of the population). Investigation of a cluster of cases with nvCJD disclosed that most of the people were likely infected through their diet. Beef carcass meat appears to have been contaminated with the BSE agent in butchers’ shops where cattle heads were split.
Tuesday 13th September 2011
Individuals including children have died of cjd due to growth hormone injectibles sourced from cadavers who had cjd. Women have also died of cjd due to contaminated fertility treatments experts in male and female fertility are concerned abut the risk that donated sperm and eggs pose for recipients.
I have been informed by patients that some private clinics in the UK are demanding that men and women sign a disclaimer regarding vCJD, so that if donated eggs/sperm have been retrieved from a person that carry’s, incubates or goes on to develop vCJD the clinic cannot be sued. This would mean that if a recipient and/or their child went on to develop vCJD from the fertility treatment the victim/s would have no legal redress or financial support.
When I attended SABTO Safety of Blood Tissue and Organs public meeting there were many world experts in fertility voicing concerns over transmission of vCJD from donated eggs/sperm.
Blood screening individuals for vCJD is a necessity……
With this blog is a photo of my Andrew taken at Waterloo station, he was 22 years old the age that many young people decide to help infertile couples and donate their eggs/sperm. My Andrew looked well and healthy so how many donors of sperm/eggs may be incubating vCJD?
The article below from a Canadian publication merely explores the tip of a growing iceberg. I have had numerous childless couples approach me who have told me of their distressing experiences. If they refuse to sign a disclaimer re vCJD they feel their chances of being helped to have a much wanted child could be diminished.
http://www.ctv.ca/CTVNews/TopStories/20110325/fertility-drugs-risk-110325/
Friday 9th September 2011
Canada's blood donor limits extend to Saudi Arabia
Canada's ban on blood donations from people who lived in the U.K., France and Western Europe is expanding to include Saudi Arabia because of a patient who has a brain wasting disease.
Health Canada, in consultation with the Canadian Blood Services and Héma-Québec, announced the protective measure on Tuesday.
The announcement follows a new case of laboratory-diagnosed probable variant Creuzfeldt-Jacob, a brain-wasting disease tied to mad cow disease, in a Canadian resident, the department said.
Variant CJD is the human form of bovine spongiform encephalopathy (BSE). Scientific evidence has linked vCJD to eating contaminated beef products from animals infected with BSE.
"The change will expand donor deferral in order to minimize the risk of possible transmission of vCJD to patients receiving blood transfusions," Health Canada said in a release.
"Canada's new requirement will expand the existing blood donor deferrals for the U.K., France and Western Europe to include Saudi Arabia. The deferral period will be for those donors who have resided in Saudi Arabia 1980 to 1996."
Canadian Blood Services said its donor questionnaire will ask if the potential donor has spent a cumulative total of six months or more in Saudi Arabia between 1980 and 1996. If the answer is yes then that person will not be eligible to donate blood for transfusion.
The change is expected to take place in mid-June, the blood agency said.
There is no predicted number of Canadians affected, but the agency anticipates a low impact on the blood system, said Dana Devine, vice president of medical, scientific and research affairs for Canadian Blood Services in Vancouver.
A Canadian resident is believed to have contracted the disease while living in Saudi Arabia. The Middle Eastern country now has three vCJD cases, comparable to certain countries in Europe, Health Canada said in calling the expanded deferral "a reasonable precautionary step to protect Canada's blood supply from vCJD."
Evidence indicates the patient acquired the disease overseas and not from eating beef in Canada since he was showing symptoms before arriving, the department said.
"There have been no reported cases of transmission of vCJD by blood transfusion in Canada and none of the three patients have ever donated blood in Canada," Health Canada said.
Currently, there is no commercially available blood test to screen donors for vCJD.
Variant CJD symptoms include early psychiatric symptoms such as anxiety, depression, withdrawal and behavioural changes, according to the Public Health Agency of Canada.
Persistent pain or odd sensations in the face or limbs often develop.
The disease then progresses to motor difficulties, involuntary movements and mental deterioration, often ending in a persistent vegetative state. The patient may live on average for about one year after the onset of symptoms.
Friday 2nd September 2011
Today my Andrew would have celebrated his birthday, instead I will walk to his grave with fresh flowers and then release some balloons above the city to remember my only son. The fourth birthday without my son Andrew ……..the pain is as raw as ever.
‘Time heals’, ‘moving on’ that is never an option my heart will be forever broken.
Even the act of mourning is denied parents and families who have lost loved ones to vCJD because as David Hare wrote in his political thriller ‘ Page Eight BBC1 Sunday 28th August 2011,’
‘You can only begin to mourn when you know the facts.’
The facts and truth behind vCJD have never been revealed and remains ‘top secret’ within the corridors of Whitehall to protect those responsible. I will continue to honour those promises I gave my dying son to expose those responsible and help prevent future deaths. Time hasn’t dimmed my anger or determination and one day soon those culpable will face the wrath of the legal system and eventually their god.
Below is part of a song from the musical Les Miserables sang by ValJean which I dedicate to my beloved boy Andrew on what should have been his 28th birthday.
BRING HIM HOME 
The summers die,
one by one.
How soon they fly
on and on.
And I am old
And will be gone.
Bring him peace,
bring him joy.
He is young,
he is only a boy
You can take,
you can give.
Let him be,
let him live.
If I die,
let me die.
Let him live.
Bring him home, Bring him home, Bring him home.
Monday 29th August 2011
The numbers of people across the UK who have been told they are now ‘at risk ‘of cjd due to operations or medical interventions are rising dramatically.
Below are the ‘official figures’ supplied by the Department of Health, in reality these numbers can be multiplied by many hundreds.
‘The CJD Incidents Panel (CJDIP) provides advice and guidance to hospitals, trusts and public health teams on how to manage incidents involving possible transmission of CJD between patients.
The CJDIP is an expert committee set up in 2000 by the Chief Medical Officer and accountable to the Department of Health. It is a sub-group of the
Advisory Committee on Dangerous Pathogens Working Group on Transmissible Spongiform Encephalopathies.
The official statistics of numbers of people in the UK who are now are risk from cjd due to surgical/medical exposure are:
’From 2000 to 30 June 2011, there have been 25 surgical incidents in which the Panel has advised that 179 patients should be considered to have an increased risk of CJD.’
CJD Incidents Panel
The numbers quoted above only show the ‘tip of the iceberg’, the UK Department of Health are fully aware of individuals who are ‘asymptomatic of vCJD’ remain healthy but are implicated in passing vCJD onwards to others via blood and medical procedures. We don’t know the exact numbers of people in the UK who are ‘ silent carriers of vCJD’, but millions of us were exposed to BSE so experts believe there are probably at least several thousand ‘carriers’ within the UK population. This pool of ‘carriers’ will be able to pass vCJD onwards through donated blood and contaminate surgical equipment, their potential to ‘infect’ hundreds maybe thousands of others remains a significant threat.
There have been various published papers about blood donors in the UK who are ‘silent carriers’ and some of these blood donors have had surgical interventions. The equipment and theatres used by these ‘carriers’ were also used by many other patients, none of those patients ‘put at risk’ have been informed of their ‘status’.
Many local health authorities take the decision not to inform patients if there is a ‘risk of vcjd/cjd’ is this to protect the patient? Or to protect the government and its corrupt officials? This sleight of hand and ‘lack of disclosure’ helps the DOH to falsely reassure and hide the growing numbers of people who have been ‘put at risk of developing vcjd’ during medical interventions.
The Department of Health and the CJD Surveillance Unit continue to massage its figures regarding the growing numbers of people who are now ‘at risk’ of developing vCJD’ through medical procedures and they continue to hide and massage the true numbers of people who have and are dying of vCJD.
Question: So just how many of us exposed to BSE could be ‘silent carriers of vCJD’?
Answer: We don’t know but all research points at possibly thousands of people in the UK may be carrying vCJD, some experts have predicted the figure to be as high as ‘one in a thousand of the UK population is probably carrying vCJD.’ Professor John Collinge UCL BBC1 May 8th 2008
Question: How many people in the population who fall into the ‘increased risk of developing vCJD’ are still able to donate blood?
Answer: ‘Thousands of people are walking around not knowing they are at ‘increased risk of developing Vcjd as they have not been informed.’ Medic Prion Unit London.
Vaccines and blood products sourced from blood donors who have died of vCJD and were sourced from BSE infected cattle were given to millions of us across the UK. Many of us who received these medications could be ‘silent carriers of vCJD’. Also many people who have had surgical procedures/ interventions in the UK are still able to donate blood, tissue, cells, and participate in donation of eggs/sperm.
Question: When is the UK government going to implement e individual blood screening test for vCJD to screen all donated blood and every patient who require surgical interventions?
Answer: There are individual blood screening tests for vCJD but these are being blocked and validation prohibited by the UK Department of Health as these tests will show prevalence in the population. Many of those responsible for BSE continue to hold high positions within governmental organisations and officialdom. Research teams and companies within the UK and in other countries have produced an individual blood test that can detect vCJD in human blood. I am in constant communication with the many scientists involved in these cutting edge developments, they have told me in recorded interviews that a blood test for vCJD has been viable for some time.
Question: How many more innocent members of the UK population have to needlessly die of vCJD via secondary transmission?
Answer: The UK government are aware that blanket testing of blood donors and patients receiving operations would cut future and further deaths of vCJD. The UK government are also aware that individual blood screening test for vCJD would open up the floodgates exposing the lies and cover-ups during BSE. This is why David Cameron and his cabinet favour filtering of blood not because its safer or cheaper but because it sidesteps the knowledge of just how many people in the UK have been exposed to BSE and the legal ramifications for those culpable.
Thursday 25th August 2011
Neurology
Variant Creutzfeldt-Jakob Blood Test on the Horizon?
By: ELIZABETH MECHCATIE, Internal Medicine News Digital Network
The prospects for a practical blood test that quickly detects the presence of prions in blood, organs, and tissues became more encouraging with the results of two studies published earlier this year.
But until such screening and diagnostic tests become available, the greatest concern for U.S. officials is the deferment of blood and tissue donors who have spent substantial time in countries in which variant Creutzfeldt-Jakob disease (vCJD) is most prevalent, according to speakers at a meeting of the Food and Drug Administration’s Transmissible Spongiform Encephalopathies Advisory Committee in August.
©Elsevier
MRI changes shown late in clinical course: MR neuroimaging 6 years after vCJD-implicated transfusion showing normal appearances on T2 and FLAIR sequences (A, B), with abnormal increased T2 and FLAIR high signal within the posteromedial thalamus evident 18 months later (C, D).
One test from researchers at the National Institute of Allergy and Infectious Diseases uses an antibody-based technique to isolate abnormal prion proteins and detect them at levels 10,000 times more sensitive than in previous tests for detecting vCJD. Another test from researchers at University College London Institute of Neurology and the National Hospital for Neurology and Neurosurgery in London was able to detect vCJD prions in the presence of the normal prion protein with a sensitivity of 71% and specificity of 100%.
The safety of the blood supply is a concern, especially in places like the United Kingdom, because of five documented cases of transmission of vCJD via blood transfusions from donors with subclinical vCJD, NIAID study investigator Byron Caughey, Ph.D., said in an interview.
"The ability of [this assay] to detect prions in plasma samples raises the possibility that this assay could be used to improve prion disease diagnosis in humans and animals and to screen the blood supply for prion contamination," wrote Dr. Caughey and his coauthors at NIAID’s Rocky Mountain Laboratories in Hamilton, Mont. (mBio 2011 [doi:10.1128/mBio.00078-11]). Besides its sensitivity for detecting prions in human plasma spiked with brain tissue from patients with vCJD, the assay, called eQuIC, also accurately distinguished between hamsters infected with scrapie – including some that were in early preclinical phases of infection – and uninfected hamsters.
However, they pointed out that the test has not been studied in plasma or CSF from vCJD patients and that "further studies will be required to assess the diagnostic utility of eQuIC based on the detection of vCJD seeding activity that is endogenous to these and other specimens."
In addition to helping prevent infections through the screening of blood, blood products, and transplanted tissues, if the sensitivity is dramatically improved, the test might be used to catch the disease as early as possible, before irreversible brain damage occurs; at which point treatments, as they become available, could be used. Such a test might also be used to test medical instruments such as electrodes to prevent iatrogenic transmission, as well as to detect low levels of contamination in the food supply, such as bovine spongiform encephalopathy (BSE) in cattle and scrapie in sheep, Dr. Caughey said.
The test developed by English researchers was positive in 15 of 21 blood samples from patients with clinical vCJD and was negative in blood from 169 patients without vCJD. The authors said that the use of the test in the differential diagnosis of suspected vCJD would be studied further in large studies (Lancet 2011;377:487-93).
The Implications of a vCJD Blood Test
Dr. Brian Appleby, a neuropsychiatrist at the Cleveland Clinic Lou Ruvo Center for Brain Health, speculated that a blood test could have "huge implications" for screening the blood supply, largely in the United Kingdom, and for use in checking deer and elk for chronic wasting disease, the main acquired prion disease seen in the United States.
A better test could also help to expedite the diagnosis of vCJD in people, who often get diagnosed very late in the course of the disease – if at all – and usually survive for less than a month after diagnosis, he said in an interview. Currently, the only forms of Creutzfeldt-Jakob disease seen in the United States are the sporadic and familial types.
Of all the prion diseases, a better diagnostic test is needed for sporadic CJD, which accounts for about 85% of all human prion diseases, but there is no evidence that sporadic CJD is in the blood, Dr. Appleby said. vCJD, however, is present not only in the blood but also in lymphoreticular tissues such as the tonsils.
He added that sporadic CJD cases are being identified much earlier now with brain MRI, which has increasingly been used and has become very useful in making and expediting the diagnosis. Unique to vCJD is the "hockey stick" sign on brain MRI, which is a symmetrical hyperintensity in the pulvinar (posterior) nuclei of the thalamus.
Dr. Appleby is a member of the FDA’s
advisory committee that in August discussed the implications of three cases of vCJD diagnosed in North America on current recommendations for vCJD screening of donors of blood, cell, and tissue-based products.
The three individuals were long-time residents of Saudi Arabia who were likely infected with the BSE agent in beef imported from the United Kingdom to Saudi Arabia during 1980-1996. After hearing data that included detailed descriptions of the cases from public health officials, the majority of the panel voted that the available data supported the FDA’s consideration to recommend deferring donors who had spent a cumulative of 6 months or more during 1980-1996 in Saudi Arabia as U.S. military personnel or who had spent more than 5 years cumulatively in Saudi Arabia during the same time period.
Having lived in the United Kingdom for at least 3 months during 1980-1996 (considered the highest risk period for dietary exposure to BSE) is among the reasons for donor deferral under current U.S. and Canadian blood donor deferral policies.
Luisa Gregori, Ph.D., of the FDA’s division of emerging and transfusion-transmitted diseases said at the meeting that donor deferral is currently the only way to protect the U.S. blood supply from transfusion-transmitted CJD and vCJD and that the current donor deferral policy in the United States would not have deferred these three individuals.
The risk of CJD transmission via a blood transfusion is theoretical, but the risk of transfusion transmission of vCJD has been demonstrated, Dr. Gregori noted.
None of the sources for this story had relevant financial disclosures.
Friday 19th August 2011
Prime Minister David Cameron is currently very verbal about ‘criminality’ and how
‘Tougher sentences should be handed out by the courts’ and yet Cameron sits alongside Kenneth Clarke works with, is financially supported and socialises with many members of the Conservative party who created and allowed BSE and its lethal human pathogen vCJD.
These officials and members of the establishment have the blood and the unlawful deaths of hundreds on their hands. Lets hope when those responsible are standing in the dock at the Old Bailey, that David Cameron joins families and victims of vCJD in our push for tough and long jail sentences and the removal of assets including homes that have been achieved through corruption during and since BSE.
Meanwhile Cameron continues to subjugate himself to Kenneth Clarke who as Justice Minister has implemented laws which now make it much harder for the disabled, vulnerable and individuals on low income to fight injustice. Ultimately the UK right wing Government are pushing for greater restraints which will compromise many of our freedoms to protest, demonstrate and challenge those in authority. These restraints are being debated and discussed at the country homes of the rich and powerful and within the corridors of Whitehall, without public knowledge. I know as I have sources at the very heart of these discussions.
Headlines such as ‘Cameron backing for tough justice’ Daily Mail August 18th 2011, only voices the media circus which Cameron and his acolytes are using to take the public eyes off the real crooks and criminals who sit in the cabinet and run the establishment.
An important part of our constitutional principles is that political influence is not directed at the judicial system, but its happening behind closed doors and with patronizing statements from David Cameron. With all eyes on the volatile situation in our inner cities the MPs expenses scandal is firmly put out of the frame.
These manipulative machinations are also being used to conceal the continuing plight and deaths of vCJD victims. Gagging orders, subtle isolation of families and the blocking and intimidation of scientists who are daring to speak out are all part of the right wing policies that are being pushed ahead by the Conservative led government.
Significantly blood screening tests for individuals that donate blood and hospital admissions are being blocked and delayed by the UK government. This is an ongoing but ultimately futile effort to hide the truth which will be revealed with blanket testing and my dossier of evidence.
In a letter from Prime Minister David Cameron July 18th 2011 he states ‘ There is no evidence that the recognised criteria used for assessing cases of vCJD have in any way been misapplied by the UK national Edinburgh Surveillance Unit’
I have personally filmed, interviewed and revealed via the media cases of victims of vCJD who have been diagnosed by the CJD unit and DOH with vCJD only for their family to be informed they will never appear on any official statistics or lists. Every week more families come forward and give me information and evidence that their loved ones deaths are being hidden.
This keeps case numbers down so that the public and press remain unaware just how many have and are dying of vCJD and how many people are being exposed via blood and hospital procedures.
Cameron also said ‘I understand there are no known cases of clinical vCJD presumed to be linked with blood donation given after the introduction of leucodepletion’
I am currently in contact with hundreds of family members who have lost a love one to vCJD a current victim a middle-aged woman is dying of vCJD after a blood transfusion at a South of England hospital in 2001.
At another meeting I challenged Lorna Williamson head of the Blood Transfusion Service about this 50 year old victim’s plight and the fact she had developed vCJD via a blood transfusion and Dr Williamson admitted ‘We are very aware of this case’.
There are also other cases which are being kept ‘secret’ and the families deliberately isolated with subtle threats that if it became public knowledge there would be repercussions for the families concerned.
Cameron also told me that ‘Leucodepletion does remove up to 50 percent of such infectivity’ This is the filtering of white blood cells from donated blood since 1999.
At a meeting of SABTO in 2008 blood expert Professor Marc Turner told a packed audience of which I was a member ‘ Leucodepletion only works about 37 percent its not enough’ adding ‘The risks are clear transmission of vCJD via donated blood is a significant risk and huge worry to SABTO (Safety of blood tissue and organs)’
The UK government spends millions of pounds annually on blood safety and its not working as people continue to become infected and exposed by contaminated blood.
The paper below highlights how inefficient our blood safety precautions are, individual blood screening tests for all blood donors and hospital admissions should be paramount.
There have been many tests developed all stopped, blocked from validation by the UK DOH and by the very officials it would implicate, wasting millions of pounds of tax payers money on a medical intervention that has little value.
When an individual blood screening test for all donors is finally implemented it will show prevalence in the population of those carrying, incubating vcjd and also the source of the infection will be traced… many people with connections with the Conservative government and its cronies including Kenneth Clarke, John Gummer, Keith Meldrum,
Richard Packer, Ray Bradley, and many others would then face criminal proceedings these are the people who are being protected not…..the public……
Meanwhile more people will die and become infected/exposed to vCJD via blood, medical procedures, organs, cells, tissue, and transplants.
(many UK private fertility clinics ask patients to sign a disclaimer re vCJD just in case the egg/sperm used has come for a individual incubating the disease) 
PPo4-20: All Clinically Relevant Components, from Prion Infected Blood Donors, can Cause Disease
Following a Single Transfusion Sandra McCutcheon,1 Fiona E. Houston,2 Anthony R. Alejo-Blanco,1 Christopher de Wolf,1 Boon Chin Tan,1 Anthony Smith,3 Nora Hunter,1
Valerie S. Hornsey,4 Ian R. MacGregor,4
Christopher V. Prowse,4 Marc Turner5 and Jean C. Manson1
1The Roslin Institute; Roslin, Edinburgh UK; 2The University of Glasgow; Glasgow,
UK; 3The Institute for Animal Health; Compton, Berkshire UK; 4National Science
Laboratory; Scottish National Blood Transfusion Service (SNBTS); Edinburgh, UK;
5University of Edinburgh and SNBTS; Edinburgh, UK
Key words: blood, prion, BSE, transfusion
Introduction. To date, there have been over 220 cases of vCJD worldwide, likely acquired directly from bovine sources. There is concern that human to human transmission from individuals sub-clinically infected with vCJD may amplify/prolong a vCJD epidemic. The area of greatest concern in this respect is blood transfusion, of which there have been several reported cases. Here we examined which blood components are likely to pose the greatest risk of transmitting vCJD via blood transfusion using our sheep BSE model.
Results. 67% of donors have been confirmed as having BSE. We have recorded 25 positive transmissions of BSE following transfusion of non-leucodepleted blood components and 2 transmissions resulting from the transfusion of leucoreduced red cells and leucoreduced plasma.
Conclusion. We show that all components, prepared to the same criteria as used in human medicine, contain sufficient levels of infectivity to cause disease in recipients following a single blood transfusion. Leucoreduction of plasma and red cell concentrates does not remove infectivity. These data indicate the importance of devising appropriate control measures to minimise the risk of human to human transmission of vCJD by blood transfusion.
Department of Health, UK (007/0162).
Methods. Sheep were orally infected with bovine BSE brain
homogenate. We collected two full-sized donations of whole
blood, before the onset of clinical signs. The following components
were transfused into naive recipients: whole blood, red cell
concentrates buffy coat, plasma and platelet units. We also transfused
leucoreduced plasma, platelets and red cells. We collected a
unit of whole blood from selected primary recipients for transfusion
into secondary recipients.
Monday 15th August 2011
There is a new and revised section on the home page in which the Aims and Objectives of the campaign are explained and discussed.
The two main goals of the campaign has never changed :
1. ‘A criminal investigation and punishment for those responsible for BSE and its lethal human pathogen vCJD’
2. 'Introduction of individual screening tests for blood donors and hospital patients to prevent future and further deaths of vCJD through person to person/secondary transmission.’
Supporters continue to come on board and a groundswell of public concern continues to grow. Thank you all very much for your practical and ongoing help. The documents, recordings, memos and photographs you have supplied are being filed as part of the dossier of evidence.
The campaign continues to evolve and move forward and one day soon the truth about BSE/vCJD will be exposed for public and legal scrutiny.
Christine Lord 17th August 2011
WWW.JUSTICE4ANDY.COM and all victims of vCJD
Mschristinelord@aol.com
AIMS OF THE CAMPAIGN
JUSTICE ACCOUNTABILITY AND RESPONSBILITY
Families of victims of vCJD demand a criminal investigation into the unlawful deaths of their loved ones. Currently all UK Ministers, ex Ministers and officials responsible for creating, condoning, allowing BSE infected material continuously into the human food and medicine chain for at least 14 years, so far have escaped any criminal investigation or legal action. Whitehall officials and those named and shamed continuously in the press are responsible for hundreds of UNLAWFUL vCJD deaths worldwide, thousands of ‘living victims’ disabled due to contaminated blood products, contaminated surgical equipment, and exposed millions of us worldwide to BSE and its lethal human pathogen vCJD.
Every month more people are being added to this list as they discover that contaminated blood products, medicines, surgical equipment has left them ‘ at risk’ of developing vCJD. These living victims like many victims of vCJD are never officially recorded by the Department of Health and remain in limbo. The wider public are totally unaware of the true numbers of people who have died of vCJD and who are dying on a regular basis.
A THOROUGH TRANSPARENT CRIMINAL INVESTIGATION that is not influenced or annexed, to any of those named and shamed on this website, or who have/had direct/indirect involvement with BSE or the Conservative Government. An independent criminal investigation that has no UK governmental influence involvement, agriculture, corporate, pharmaceutical interests or agenda. The investigation to be conducted in a totally honest transparent and genuine manner, documents, statements, testimonies available at all times for public scrutiny. With all information evidence accessible and heard in the public domain and available to the UK and worldwide media. Including reasons why and who was involved when significant information was withheld during and after the BSE inquiry. Shredding, loosing, mislaid, lost documents evidence and selective memory lapses by those culpable will be explored and investigated.
Financial, career, familial connections now and then and promotional gains
during BSE and since will be investigated and made available to the public and media. Financial, land, property gains due to lies, corruption and manipulation during and since BSE will be seized and held by the court for dispersal at a later date. Honours, titles, status, position or fellowship will be removed from those culpable, as will any benefits received from these positions by family, siblings, children of those responsible for BSE. .
A CULTURE OF SECRECY CREATED BSE AND UNLAWFULLY KILLED MY ONLY SON now is the time for the truth for the facts to be accessible in their entirety to the UK public and media.
RAISING AWARENESS
vCJD its causes, effects and symptoms. Presenting current treatments and research.
Providing leaflets handouts signposting for members of the public and families, friend’s colleagues affected by vCJD. Presenting clear facts and information so that the public can make informed clear choices for and on behalf of themselves and their families. Free lectures talks available to groups across the UK, including educational establishments, parent groups, co operatives, NGOs, any group with a wish to know more about BSE/vCJD.
EDUCATING …there are many myths and untruths that surround vCJD much of this supported and spun by Whitehall, The aim of the campaign and its website, leaflets, supporters, demonstrations, is to give the UK population informed choice and facts about the disease its origins, creators and how to prevent future and further deaths through our blood supply, organs, tissues, and contaminated surgical equipment.
PROMOTING RESEARCH INTO PRION DISEASES, TREATMENTS, CURE, SCREENING TESTS.
Supporting, aiding and participating in research, providing a two way traffic of information facts and support between experts, scientists, medics, researchers, victims and their families.
SUPPORTING VICTIMS AND FAMILIES AFFECTED BY VCJD
PUBLIC FORUM TO SHARE FEARS, INFORMATION, EXPERIENCES.
SUPPLYING FACTS AND UP TO DATE NEWS
INVESTIGATING AND RESEARCHING CURRENT TREATMENTS
SUPPLYING INFORMATION ABOUT CURENT SAFETY RE BSE/Vcjd TO OUR FOOD/MEDICINE
PROMOTING INDIVIDUAL VCJD SCREENING FOR ALL UK BLOOD DONORS/ORGAN DONORS.
ALL CADAVERS AT POST MORTEM TO BE TESTED FOR VCJD
PROVIDING THE MOST EXTENSIVE, INDEPENDANT FACTS AND INFORMATION ABOUT BSE AND ITS LETHAL HUMAN PATHOGEN VCJD,
Background, origins, those responsible, roles within Whitehall, supply ongoing and current information about school meals, vaccines, baby food and BSE material within the human food and medicine chain. Providing clear concise simple information about current, past victims, the most comprehensive list of victims worldwide, and up to the minute information via Christine’s ongoing blog.
ERRADICATION OF BSE IN UK HERDS AND CATTLE. BSE IS ENDEMIC IN UK HERDS AND STILL KILLS CATTLE.
TO CONTINUALLY CHALLENGE THE UK GOVERNMENT OVER VCJD A SIGNIFICANT ONGOING PUBLIC HEALTH ISSUE
TO HELP PROTECT YOU AND YOUR FAMILIES
These are the ongoing aims of justice4andy.com I don’t want any other family to suffer the heartache and pain I do every day missing my only son, who died aged 24 of vCJD in 2007. Please join me and the hundreds of other families affected, the thousands who are ‘living victims of vcjd’ and the millions of us who have been exposed to BSE, we need and deserve to know the truth and for those responsible to pay their dues in a criminal court of law. Thank you for your time Christine Lord
www.justice4andy.com
‘THE DEAD CANNOT CRY OUT FOR JUSTICE IT IS THE DUTY OF THE LIVING TO DO SO FOR THEM’ .
Wednesday 10th August 2011
Since early 1980s when BSE infected material entered the human and medicine chain cases of sporadic cjd/ dementia have increased dramatically. Pre BSE sporadic CJD (naturally occurring form of the disease which is spontaneous and usually in the elderly) was ‘one in a million ‘ now Professor John Collinge and other experts in prion diseases state that in the UK individuals now have ‘1 in 33,000 chance of developing cjd during their lifetime’. These rising cases have nothing to do with better diagnosis or an ageing population as this has been taken into account, this huge increase is worrying. The numbers of younger people succumbing to sCJD here in the UK and across the globe is un-precedented.
It would appear scientific knowledge and these experts including Professor Collinge’s integrity is now being questioned and rubbished by UK Prime Minister David Cameron who has told me ‘ I understand there is no evidence that would support a suggestion that one in 33,000 people are developing cjd’ july 18th 2011
I was a member of the audience when Professor Collinge, Simon Mead and various other prion experts revealed the fact that ‘1 in 33,000 in the UK would develop cjd’ this was during a packed and recorded lecture at the National Neurological hospital in central London December 2008. So is Cameron calling these world experts liars?
My investigation, published papers from global experts in prion disease have revealed that sCJD continues to rapidly rise with worrying much younger cases, this is a fact that the UK Prime Minister is denying. BUT AS LEADER OF THE SAME POLITICAL PARTY WHICH CREATED BSE HE WOULD WOULDN’T HE?
Experts have also told me in recorded interviews that ‘At Post Mortem/autopsy middle-aged and older people who may well have died of vCJD their brain pathology can and does present like ‘sporadic cjd’. Continuing ‘We have had cases where the brain lesions can be seen as both sporadic and vCJD.’ concluding ‘we have been told not to record vCJD.’
At least 300 people who have died of sCJD or was it vCJD? in the UK were life long blood donors, their blood given to thousands of individuals across the UK. I believe these recipients of blood/blood products/vaccines are at risk but they like thousands of other people across the globe are oblivious.
Cases of sCJD are rising not just in the UK but globally and there are clusters of cases of sCJD in the same areas as younger people are dying of vCJD. This points at a common source of infection, the UK government and its scientists are aware of this source but it’s being kept ‘top secret ' too many in the UK establishment would be immediately culpable.
Below are just two more incidents of sCJD here in the UK, the first press article examines the death of a Mr Corbett from the county of Gloucester where currently there are young victims dying of vCJD. Mr Corbett’s symptoms and length of illness is typical of vCJD. Although the human form of BSE predominately affects younger people I have talked at length with wives who have lost their husbands to vCJD in their sixties (the victims had not received blood transfusions) . So it’s more than possible for older people to develop vCJD and many farmers, farm hands and farmers’ wives have died of vCJD. With this blog is a photo of vCJD victim Kate Richer on vacation at a farm where she use to help milk the cows. University Graduate Kate died aged 22.
The second case of Durham man Bob Wall has now been overturned and the Edinburgh CJD unit is saying it’s probable or possible case of sCJD. There have been clusters of vCJD cases in the Durham area.
This is Gloucestershire | Cheltenham man dies of
CJD.
www.thisisgloucestershire.co.uk/Cheltenham.../story.html
August 5th 2011
A CHELTENHAM man died from CJD, the extremely rare degenerative neurological disorder, a coroner has ruled at an inquest.
However, Richard Corbett's death was not related to mad cow disease, the coroner said, even though he had worked with cattle.
The inquest at the Seasons Conference Centre in Cheltenham heard that the type of the disease Mr Corbett had contracted had no proven link to bovine spongiform encephalopathy (BSE).
Gloucestershire deputy coroner David Dooley was told that the 66-year-old was a resident at St Faith's Nursing Home, in Malvern Road, Cheltenham, where he died on May 19 last year.
He had been a management consultant, his sister Anne Oxley-Corbett told the inquest. He never married, but had a daughter who lives with her mother, she added.
"As well as being a management consultant, he also reared calves and sold them through the livestock trade," she said.
"He was fit and well until July 2008 when he started to have mental problems.
"He was eventually referred for psychiatric diagnosis and it was thought he had some type of Alzheimer's disease.
"He deteriorated week by week and had to go into full-time nursing care in October 2009. His condition was never fully diagnosed, even though he had several sets of tests and the time from the onset of the disease to his death was so short."
A joint postmortem examination of Mr Corbett's brain by experts Dr Declan McGoyne and Professor Seth Love found widespread changes in keeping with CJD. These were of the very rare sporadic MV2 sub-type of the disease, which was not linked to BSE.
Recording a verdict of death by natural causes, the coroner said Mr Corbett had been in close contact with animals for many years but that the CJD linked to BSE could only be caught by the ingestion of the infected protein from older animals.
"And it only affects younger humans," he said.
"This was an older man who worked with young calves."
He said Mr Corbett's death had been from a naturally occurring disease that had run its normal course.
The Health Protection Agency said after Mr Corbett's inquest that the strain of CJD he had developed occurred worldwide at a rate of just one case per million per year.
It said variant CJD was strongly linked to exposure, probably through food, to BSE, but that the sporadic CJD, which Mr Corbett died from, was not linked to BSE.
Durham businessman dies of 'mad cow disease'
· by Alastair Craig, The Journal, July 23 2011.
A NORTH East business executive has died just weeks after being diagnosed with the rare Creutzfeldt-Jakob Disease, the human form of mad cow disease.
Bob Wall, a married father-of-one, was managing director of a division of the highly successful construction firm Esh Group, based in County Durham.
An inquest into the 51-year-old’s death is expected to be opened shortly, following his funeral at All Saints’ Church in Lanchester, County Durham.
Creutzfeldt-Jakob Disease (CJD), or ‘human BSE’, is linked to consuming contaminated beef and came to worldwide prominence in the late 1980s and early 1990s as “mad cow disease” swept the UK a
nd Europe.
Mr Wall, from Waterhouses, near Durham city, was the managing director of Deerness Fencing, one of the region’s largest manufacturers and installers of timber and metal partitions, with clients including Yuill Homes, UK Coal and local.
The firm is a subsidiary of the Durham-based Esh Group, and was founded in 1976 by Michael Hogan.
Mr Hogan, now development director and a major shareholder at Esh Group, last night paid tribute to his former MD, describing him as “an inspirational role model for young business people”.
In 2006, Mr Wall accepted a Journal business award on behalf of the firm for its excellent work in the community.
“I have known Bob for some 13 years and, how to give tribute to him, I just don’t know where to start,” said Mr Hogan.
“What I will say is that as a work colleague he gave 100% and constantly pushed himself for improvement.
“He was a genuine one-off, this level of commitment however was regarded as normal by Bob.
“When he took up the managing director role of Deerness Fencing he improved the business I’d owned and ran for some 20 years beyond all expectations and we as Esh Group will be forever grateful to Bob for this.
“To the other managers and directors of the group I’m sure he was a role model they aspired to.
Read More
http://www.journallive.co.uk/north-east-news/todays-news/2011/07/23/durham-businessman-dies-of-mad-cow-disease-61634-29105464/#ixzz1T6GJ4ajL
http://www.constructionenquirer.com/2011/07/23/esh-director-dies-of-mad-cow-disease/Esh
Tuesday 2nd August 2011
Transmission of vCJD/Cjd via blood products and contaminated instruments is a significant threat. In the last few months at least 50 people in England have been informed that they are now ‘at risk’ of cjd due to the contamination of instruments used on them during operations.
These people like the thousands of others across the UK who now have a ‘ at risk of cjd status’ is unacceptable when blood screening tests to protect hospital patients are being sidelined and blocked by the UK Department of Health. These silent unseen ‘living victims’ never appear on any official statistics that are available for public scrutiny. A confidentiality clause is used not to protect patients but to conceal the numbers of people exposed to vcjd/cjd, a list that is growing.
Original paper can be found here -
http://content.karger.com/ProdukteDB/produkte.asp?Aktion=ShowPDF&ArtikelNr=328646&Ausgabe=255367&ProduktNr=224263&filename=328646.pdf
http://content.karger.com/produktedb/produkte.asp?doi=328646
Vol. 36, No. 4, 2011
Impact of Being Placed at Risk of Creutzfeldt-Jakob Disease: A Qualitative Study of Blood Donors to Variant CJD Cases and Patients Potentially Surgically Exposed to CJD
Gillian Elama, Katie Oakleyb, Nicky Connorb, Patricia Hewittc, Hester J.T. Warde, Syed M.A. Zamanb, Yimmy Chowb, Theresa M. Marteaud
a University College London, Mortimer Market Centre,
b Health Protection Agency Centre for Infections,
c NHS Blood and Transplant, Colindale Centre, and
d Health Psychology Section, Psychology Department, King’s College London, Guy’s Campus London, London, and
e National CJD Research and Surveillance Unit, University of Edinburgh, Edinburgh, UK
Abstract
Background: The study objective was to describe the emotional and behavioural responses to Creutzfeldt-Jakob disease (CJD) risk notification. Methods: A qualitative study using 11 participants’ interviews, which were analysed thematically with Framework Analysis. Participants: Six participants purposively selected from people exposed to surgical instruments used previously on patients with or at risk of CJD (any type; n = 60), and 5 participants from a cohort of blood donors to patients who subsequently developed variant CJD (n = 110). Results: Notification was initially a shocking event, but with no lasting emotional impact. Those notified were convinced they were at extremely low risk of CJD and coped by not thinking about the information. Disclosure outside the immediate family was limited by fears of stigma. All expressed concern about the possibility of onward transmission and agreed notification was appropriate. Individual adherence to public health precautions varied from those who did nothing, apart from not donating blood, to those who consistently followed all advice given. This variation was informed by an assumption that information was always shared among health professionals. Conclusions: Factors contributing to minimising emotional distress following notification of CJD risk were evident. We found little evidence of sustained emotional distress. However, implementation of behaviours to minimise onward transmission, particularly in health care settings, was variable – this requires further investigation.
Copyright © 2011 S. Karger AG, Basel
Tuesday 26th July 2011
It is with deep regret that I inform readers of the blog that Irhad Rivzo who was diagnosed with vCJD April 2010 has died this morning at 3.45am.
He was just 24 years old and only arrived here in the UK late 1992 from war torn Bosnia.
Irhad was a brilliant student and looked forward to a career in aviation and was a RAF cadet. A graduate of Thameside University he made many friends and had a wonderful future ahead of him until vCJD struck.
With this blog are photos of Irhad just after diagnois with his mother and one taken just a few months ago during my visit to his home in central London.
Also another photo of Irhad’s collection of model planes and RAF memorabilia which he kept in his bedroom. .
His mother Indiria has been told that Irhad contracted the disease here in the UK. This proves that BSE infectious material continued into the human food and medicine chain for much longer than the UK Government admits.
Irhad was Indira’s only child; I was privileged to spend time with them both at their home. I witnessed the love and bond between Irhad and his mother and the dedication which Indira gave to her son nursing him 24/7 was an inspiration.
My thoughts and prayers are with Indira and Irhads friends and family, may your god go with you.
Do not stand at my grave and weep,
I am not there, I do not sleep,
I am a thousands winds that blow,
I am the softly falling snow.
I am the gentle showers of rain.
I am the fields of ripening grain.
I am in the morning hush,
I am in the graceful rush.
Of beautiful birds in circling flight
I am the starshine of the night
I am the flowers that bloom,
I am in a quiet room.
I am in the birds that sing,
I am each lovely thing.
Do not stand at my grave and cry,
I am not there – I did not die. ,.
By Mary Elizabeth Frye (1904)
Thursday 21st July 2011
Since my Andrew died of vCJD I have travelled extensively across the UK and globe speaking and interviewing families affected by the human form of BSE. During my ongoing investigations I have been contacted by and met many other families who are convinced their loved ones untimely deaths was due to vCJD. Many of these families live in fear because government official’s intimidation forced them to accept a diagnosis of sporadic cjd, dementia or encephalitis. Families have been warned that if they did not agree to this diagnosis their loved ones could not be buried, traumatized family members faced with this distressing prospect have relented to allow their loved ones to rest in peace. These families remain afraid but have been brave enough to supply me with death certificates, autopsy reports, confidential letters and various other dossiers of evidence which point strongly at a continuing cover-up regarding the true numbers of individuals who have died of vCJD.
I am convinced that many cases in the elderly of sCJD, Alzheimer’s and dementia are directly linked to the ingesting of BSE material in the human food and medicine chain, which can be directly blamed on the UK Government’s policy and corruption throughout the BSE scandal.
Below is an article published by the MRC Prion Unit London highlighting the scientific links between Alzheimer’s and vCJD. We face an epidemic of Alzheimer’s and dementia cases worldwide and this is not just due to an ageing population. In countries throughout the world cases of sCJD and dementia have tripled this is in direct relation to exporting of BSE material from the UK and also the ongoing migration and immigration of UK individuals and families. USA citizens who have worked, lived or visited the UK are at least 20 percent more likely to develop cjd and dementia type illness.
Although Australia has never had a case of BSE many of its residents have strong links to the UK and cases of dementia and cjd are rapidly increasing. With this blog is a photo of myself, Tommy Goodiwn lost his son Grant to vCJD aged 30 16th Jnauary 2009, Rose Smith lost her son Billy aged 21 to vCJD 13th January 2010, during our petition and protest to Downing Street in which David Cameron has not even replied or acknowledged our letters. We will continue to fight for justice and transparency for all victims globally of cjd.
MRC PRION UNIT
http://www.PRION.ucl.ac.uk/press-media/press-releases/alzheimers
World’s first blood test for vCJD developed in MRC lab
Drugs being developed to tackle CJD could also help prevent Alzheimer’s.
Scientists funded by the Medical Research Council (MRC) and Science Foundation Ireland (SFI) have identified two antibodies which could help block the onset of Alzheimer’s disease in the brain. The antibodies, ICSM-18 and ICSM-35, were already known to play a crucial role in preventing ‘protein misfolding’, the main cause of Creutzfeldt–Jakob disease (CJD), the human form of mad cow disease. This discovery represents a significant step forward in the battle to develop drugs to treat Alzheimer’s disease – a devastating neurodegenerative illness which affects more than 20 million people worldwide.
The study, published today in Nature Communications, has shown, using mice, that these antibodies can block damaging effects on brain tissue caused by a toxic substance called ‘amyloid beta’. Cumulatively, amyloidbeta becomes attached to the surface of nerve cells in the brain, stopping them from communicating effectively and causing memory loss. The results showed that the antibodies stopped the amyloid beta proteins from taking hold and damaging the brain.
The study also confirms findings from a 2009 paper by Yale researchers which first indicated that prion proteins, the proteins which can change their shape and cause CJD, may be involved in Alzheimer’s disease.
Clinical trials to see whether drugs based on these antibodies can mitigate the damage caused to the human brain as a treatment for patients with CJD are due to begin in 2012.
The work was carried at the Medical Research Council Prion Unit at University College London, in collaboration with colleagues at the Laboratory for Neurodegeneration at University College Dublin and Trinity College Dublin.
Professor John Collinge, director of the MRC Prion Unit at University College London, who led the study, says:
“With an ageing population and increasing numbers of families affected by Alzheimer’s disease, there is an urgent need for new drugs which will help to preserve brain function and prevent memory loss, the symptom which most characterises the devastating impact of Alzheimer’s. We’re thrilled that this discovery shows in mice that these two antibodies, which we are developing to treat CJD, may also have a role in treating more common forms of dementia like Alzheimer’s disease. If these antibody drugs prove to be safe in use to treat CJD we will consider whether studies in Alzheimer’s disease should be carried out.”
Professor Dominic Walsh, co-corresponding author at University College Dublin, says:
“A unique aspect of this study is that we used amyloid beta extracted from human brain, the same material we believe is causing memory loss in patients with this devastating disease and we identified two antibodies that could block this effect. The use of these specific antibodies is particularly exciting since they have already undergone extensive pre-clinical testing for use in treating CJD. Thus a lot of basic work has already been done and could fast-track these antibodies for use in humans. The next step is further validation in other disease models of Alzheimer’s and then safety trials in humans.”
Interaction between prion protein and toxic amyloid â assemblies can be therapeutically targeted at multiple sites will be published online in Nature Communications
Monday 18th July 2011
My daughter Emma was just 16 years old when her brother Andrew was diagnosed with vCJD. Despite her heartbreak she continued her studies and has just completed her third year at university.
I am very proud to announce that Emma received a first for her dissertation and an upper second for History.
I am so proud of my daughter and her big brother Andrew would be bursting with pride too!
Well done my number one daughter, so looking forward to your graduation ceremony.
Here is a photo of Emma with my best friend Sue, who has and continues to be a wonderful support and surrogate Aunt to my family.
Tuesday 12th July 2011
It has been over eight weeks since a petition and four personal letters from parents who have lost a child to vCJD were personally delivered to No 10 Downing Street.
Four mums and dads wrote heart wrenching letters personally to the UK Prime Minister, telling him of their need for justice and the truth. They told him about their child’s achievements, personality and their decline into the depths of vCJD. These mother’s and fathers have not even received an acknowledgement from David Cameron or his office. This is totally dis respectful to these grieving parents and their families.
The Petition which asked many challenging questions about vCJD, families need for resolution and a criminal inquiry into the unlawful deaths of all vCJD victims has also not been acknowledge and totally ignored. The blocking of essential research, treatments, screening tests and keeping vCJD blood/tissue/ organ samples in-house/owned by the UK Department of Health perpetuates the sinister cover-ups that have killed so many innocent people. These lies and half truths are being manipulated by the current Conservative led government.
This ‘culture of secrecy’, lies and hiding the truth continues in the UK government its departments and ministerial offices in 2011. There is a total lack of transparency regarding BSE/vCJD and much information regarding these disease are being kept hidden and out of the public domain.
By not answering the many health related and relevant questions posed by the petition, Cameron and his cabinet continue to put other lives and families at risk of vCJD. The Conservative PR and media team have been instructed to bury not only news of ongoing and current victims of vCJD but also cases of BSE in UK cattle and animals. ‘False reassurances’ around the safety of UK blood/blood products is also being spun by the highly paid and skilled Conservative Media team.
VCJD has not gone away and continues to kill especially young people on a regular basis, I know because I have and continue to meet and interview victims and their families.
Many families are being intimidated not to speak to me or the press or even to their friends. One family was told your son is dying of vCJD ‘because you fed him cheap meat during the 1980s’. Families are made to feel it is somehow their fault to take away the heat from the criminal actions of the real culprits John Gummer, Kenneth Clarke and those named and shamed on this website. 
BSE has not been eradicated from UK herds; there is a manipulation of testing and passive surveillance so that it creates false reassurances. Cattle with BSE and animals that are incubating or carrying the disease remain in the human food and medicine chain.
UK blood is not safe or free of vCJD and yet many of these questions posed in the petition delivered by hand to the UK Prime Ministers residence remain unanswered or acknowledged.
The silence that is coming from David Cameron, Kenneth Clarke and the UK Government speaks volumes…….
Friday 8th July 2011
Below is yet another request to Novartis Vaccines asking for information regarding the millions of oral polio, polio, diphtheria and Tetanus vaccines given to babies, children, teenagers and adults throughout BSE. So far my repeated letters and correspondence has been met with a negative reply from Keith Gandy Corporate Counsel (Solicitor) for the company. Why this total lack of transparency?
Dear Keith Gandy,
Please find my request below, I request this information under the Environmental Information Regulations 2004. Novartis Vaccines is a company which performs public functions and there is a public interest for the disclosure of the information requested. Individual batch numbers are irrelevant to this request.
Yours sincerely
Christine Lord 27th June 2011 
CC BBC
Ms Christine Lord
Southsea
Hampshire
mschristinelord@aol.com
www.justice4andy.com
24th May 2011
Dear Keith Gandy,
Oral Polio, Polio, Tetanus and Diphtheria Vaccines manufactured by Wellcome Foundation. Transferred 1991 to Evans Medical Ltd now Novartis
I am once again amazed at the lack of help and transparency from Novartis and yourself as part of its legal team. Within your archives you have the answers to my simple question but are being deliberately obtuse and are unwilling to help a bereaved mother in her quest for the truth.
I have written several letters first to Novartis head of immunology Dr Chris Worth and now the Novartis Legal team.
I repeat my request ‘Did Evans now Novartis in its production, processing, manufacturing of its oral polio, polio, and tetanus and diphtheria vaccines ever use primate, bovine, or human material’. I ask this on behalf of my late son Andrew Black who received vaccines during the 1980s and 1990s who died of vCJD in 2007 aged 24 and on behalf of the millions of children, babies and young adults who were also inoculated with these vaccines.
In your last correspondence (May 20th 2011) you dismiss my questions and state, ‘However we cannot respond to the type of general wide ranging questions your correspondence now includes’.
I asked these same simple and basic questions of GlaxoSmithKline who as part of Wellcome sold on their vaccine portfolio to Evans (now Novartis) in 1991. This was part of GlaxoSmithKline’s reply, which revealed that:
‘The Wellcome Foundation sold its oral polio vaccine and DT vaccines To Evans Medical Ltd (now Novartis) in 1991 and at that time the regulatory information about those vaccines was transferred to Evans Medical Ltd ( now Novartis) as the product license holder of those vaccines.’
GlaxoSmithKline also told me ‘Bovine, monkey and human material were used in the development and manufacture of these vaccines.’
As these vaccines and their ingredients contained bovine, monkey and human material when they were passed onwards to yourselves, I would like clarification if Novartis continued to use bovine, primate and human in any part of the manufacture and processing of their vaccines?
I understand as license holder of these vaccines that Novartis continue to retain in archives and current files all details of the ingredients of these vaccines and materials used at every stage of the process. As representative of its legal team, you and Novartis are fully aware of the material its archives and what was used in those vaccines, and like GalxoSmithKline can provide me with these answers.Why are you choosing to reply to a heartbroken mother in such a dismissive tone when the answer to my simple question is easily accessible? I was told by your staff that vaccines and their ingredients are stored in your archives going back decades.
Speaking to many high level scientists who are involved in the making of these vaccines during and since, I know that because of corporate, medical, insurance, legal, policy and scientific reasons that this information and the storage of that information is within your archives and computer system and easily accessible. There is no need of individual batch numbers for this simple request.
I find the continuation of letters with carefully crafted prose which gives no answers both offensive and upsetting. Why are Novartis choosing to withhold this information which is in the interest of the public as well as a grieving mum who needs answers?
I request once again ‘ Did oral polio, polio dip and tetanus vaccines produced and manufactured by Novartis ( Evans Medical Ltd) who bought the license from Welcome in 1991 contain bovine, primate and human material during any part of its process, development and manufacturing.’
I expect a full reply with all the details I have requested.
Yours sincerely,
Christine Lord
cc
Tuesday 5th July 2011
In the latest scandal surrounding vCJD the Coroners Society of England and Wales have refused to support a study which would show the prevalence of vCJD in the UK population.
The Health Protection Agency recently attempted to create a post-mortem tissue archive which meant taking small amounts of tissue from cadavers during autopsy to find out just how many of us could be or are silently carrying/incubating vCJD.
The Coroners Society of England and Wales refused to participate in this survey which has the backing of every expert in the field of vCJD/prion disease and medics/scientists across the UK.
Once again significant evidence regarding vCJD its causes, sources and its prevalence is being blocked and sidelined by a group of individuals who feel they have no moral obligation to protect public health. Once again the forces of evil that created condoned and allowed BSE are weaving their intrigue to prevent important evidence being collected.
In a damning paper published from the London School of Hygiene and Tropical Medicines by McGowan and Viens they slate Coroners refusal declaring the success of the archive was prevented; because Coroners could not be convinced to support the study.
The paper says that ‘Coroners are misguided and failed to appreciate that Coroners have moral obligation to protect public health.’
It would appear that the Coroners Society of England and Wales are protecting those named and shamed on this website and are indifferent to the health and wellbeing of the general public.
Unless a law is passed forcing the Coroners of England and Wales to participate they can stop this or any other archive of vCJD tissue taken place at post-mortem. The law would have to be sanctioned and passed by a Conservative led government who are in no rush to push this law forward as it would highlight the true number of people who have been exposed to BSE.
Meanwhile more people will be put at risk as those incubating or silently carrying vCJD continue to donate blood, tissues, organs and in doing so put more people in danger of developing the horrific brain wasting disease via secondary infection. One blood donor silently carrying vCJD has the potential to infect several hundred people.
Many victims of vCJD during the early stages of the disease have been involved in car accidents, the majority of deaths through accidental death in the 17-25 age group is caused through motor car accidents. Many more victims of vCJD have also attempted suicide this is another major cause of death in young people. Surely if a person is already having a post mortem taking just a small amount of tissue from the cadaver to find out if they were carrying vCJD is essential not only to public health but to the grieving family?
It would seen the corrosive and complicit corruption that killed my son continues to weave its intrigue and prevent the public knowing the true facts of just how many people are carrying vCJD.
Wednesday 29th June 2011
Irish Examiner
Fears Cork father may have died from CJD
By Fiachra Ó Cionnaith - Saturday, June 25, 2011
TESTS are taking place amid fears that a Cork father may have died from the rare, lethal brain disease Creutzfeldt-Jakob disease (CJD).
The long-haul truck driver, aged 48, from the northside of Cork city, passed away last Saturday after being struck down with a still unconfirmed illness.
The English man, who had been living in Ireland for more than a decade after marrying a Cork woman, was buried on Thursday at St Catherine’s cemetery in Kilcully after undergoing treatment for a number of weeks.
His name is known to the Irish Examiner but has not been published out of respect to the family.
Preliminary results from the postmortem were sent to Britain to identify the exact cause of death earlier this week amid fears he may have been suffering from CJD.
The HSE, which confirmed the move yesterday, has stressed they have not been informed of any potential cases of the condition from doctors who were treating the man at Cork University Hospital.
A spokesperson said that under existing guidelines the specialist would have immediately contacted public health officials to warn them of the potential cause of death.
However, the family of the man is understood to have been privately told it is suspected that the father-of-two lost his life after contracting CJD.
The condition is a lethal degenerative neurological disorder for which there is no cure.
It is believed to be closely linked to bovine spongiform encephalopathy (BSE) — more commonly known as mad cow disease — and acts by effectively causing holes in brain tissue.
This occurs when the protein at the centre of the condition, prion, develops in a way that causes it to fold in on itself.
The main initial symptoms of the condition are dementia, memory loss and hallucinations.
This is generally followed by speech problems, co-ordination and seizures.
A correct diagnosis cannot be made until after a postmortem and further tests to verify the cause of death.
It is unknown how the long-haul lorry driver may have contracted the lethal disease.
Read more:
http://www.examiner.ie/ireland/fears-cork-father-may-have-died-from-cjd-158990.html#ixzz1QUihiHfy
Friday 24th June 2011
Kenneth Clarke Minister of Justice, personal friend of David Cameron and John Gummer. Supporter of Ben Gummer MP (Johns Son) and corrupt liar continues to hold onto his job within the UK Government.
Even in May when he told the BBC that ‘date rape’ did not count as a serious offence, Clarke has not been sacked. Throughout Clarke’s long Ministerial career his deliberate financially fuelled and partisan decisions have killed hundreds, maimed thousands and exposed millions to BSE.
For years Clarke allowed contaminated blood products used to treat infants, school children and teenagers to infect them with Aids, Hep C and vCJD. Clarke knew that these blood products used to treat haemophiliacs were sourced from individuals that were carrying blood borne diseases. Children as young as four became infected because of these contaminated blood products, When told of the youngsters plight Clarke response was
‘ Fxxk the haemophiliacs how can I get them off my back.’ He then placed his feet upon his oak desk in the luxury of his offices in Whitehall and dismissed their plight with a wave of his hand.
Kenneth Clarke also condoned the use of BSE infected material in vaccines throughout the 1980s and into the 1990s. At least two million UK children and many abroad have been immunised with these vaccines sourced from BSE cattle, primate and human material. As Health Minister he refused to stop MRM mechanically recovered meat containing the most infectious BSE material going into school meals, hospital food, armed forces meals and educational establishments. There were huge profits to be made from MRM and Clarke had his eye on promotion and the wealth that it would accumulated for shareholders.
The drug companies who supplied the haemophiliacs their medicine, supplied the vaccines sourced from BSE infected cows all made huge profits. These huge corporations had contracts with the UK government and Department of Health worth tens of millions of pounds. Many of the shareholders who made huge gains on their stocks had Tory party connections either familial, friends, or colleagues. Much of the huge wealth acquired, promotions and career heights attained by Kenneth Clarke have been at the expense of innocent lives destroyed.
My Andrew’s unlawful death and all victims of vCJD have helped to pay for and continue to maintain Kenneth Clarke and his family’s current lifestyle. Kenneth Clarke’s also has shares in BP.
Clarke was already wealthy and the extra boost that his corruption during BSE and the contaminated blood scandal has helped to expand Clarke’s coffers. This has enabled him to employ a large PR and press team whose job is to spin and push as many positive stories about Kenneth Clarke as possible. The persona of a ‘benign good bloke ‘is far removed from the real Kenneth Clark. During lunch and meetings with ministerial colleagues and party officials they told me that ‘Kenneth Clarke is boorish, lazy and arrogant his opinion of the ordinary public is usually full of expletives.’ He is so sure of his power that he even keeps ‘Cameron waiting’.
The knives are being sharpened as Kenneth Clarke has made many enemies Despite Ed Milliband leader of the Labour Party demanding Clarke’s resignation in May, the Minister of Justice remains in place. Any other Minister or MP with Clarke’s track record and his most recent distasteful comments about rape would be sacked and facing criminal proceedings. 
The Gummers and Clarke have used their finances and influence to pave the way for David Cameron’s Premiership. Clarke and Gummer know too much about the Tory Party they know where the skeletons are buried and can incriminate too many regarding BSE and other scandals. But the net is closing…….
‘There’s Daggers in men’s smiles’…….Macbeth Act 11
For whom the bell tolls…..John Donne
No man is an island,
Entire of itself.
Each is a piece of the continent,
A part of the main.
If a clod is washed away by the sea,
Europe is the less.
As well as if a promontory were
As well as if a manor thine own.
Or thine friends were.
Each mans death diminishes me,
For I am involved in mankind.
Therefore, send not to know
For whom the bell tolls,
It tolls for thee. Kenneth Clarke, John Gummer, Richard Packer,
Thursday 16th June 2011
The article below highlights the on going and significant risk Vcjd poses via blood and surgery for the global population. Armed forces personnel are being put ‘at risk’ of exposure of vCJD during conflicts after medical procedures.
A blood screening test for individual blood donors and all hospital/surgical patients is essential. Why is the UK Department of Health blocking the technology to implement this simple blood screening test? Meanwhile more people will die needlessly of vCJD through donated blood, tissues, cells, organs and via contaminated hospital equipment. In the last few months at least 50 people in the UK have been informed they are now ‘at risk’ of cjd due to contaminated hospital equipment.
The UK Department of Health are aware of ‘silent carrier’ blood donors who have given blood for many years remain healthy themselves but their donated blood has been implicated in others developing/dying of vCJD. Millions of thousands of pounds are spent annually screening UK donated blood for a variety of blood born diseases and yet UK donated blood is not screened for vCJD. This simple, cost effective test is being sidelined as it would highlight the true numbers who are carrying or incubating vCJD. Meanwhile a secondary epidemic of vCJD cases via blood remains a significant possibility. With this blog are some of the banners we took to Downing Street, London on 12th May and a photo of Judith a single mum of two who had a blood transfusion in 2008 at the Royal Sussex Hospital. Judith told me:
‘I was not told of the risk of vCJD via blood and should have been informed. I could have then made other arrangements and had my own blood stored. All blood donors should be screened for vCJD. How do I know the blood given to me was safe and free of vCJD? I have been told I can no longer be a blood donor as I am ‘at risk’ due to the blood transfusion. This is totally unacceptable’’
Defence Chief admits infection risk for Mid-East troops
Jacquelyn Hole reported this story on Tuesday, May 24, 2011 12:14:00
ELEANOR HALL: Just as he announced that more soldiers were injured in Afghanistan, the Defence chief has had to deal with revelations that a military hospital in the Middle East may have exposed Australian troops to serious infection risks.
The Defence Department has conceded there were faulty sterilisation procedures at the Al Minhad air base outside of Dubai and warned all soldiers who have had a procedure there to undertake a blood screening test.
The Defence Force chief, Air Chief Marshal Angus Houston, said today that no cases of infection have been reported so far but infection disease experts say the lapse would be unlikely to occur in an Australian hospital.
Jacquelyn Hole has our report.
JACQUELYN HOLE: The Al Minhad health facility is a small unit just outside the capital city of Dubai in the United Arab Emirates (UAE), which the head of the Defence Force, Angus Houston says is used for more minor medical problems.
ANGUS HOUSTON: But what I would stress, that hospital, that hospital is not a hospital, it's a small health unit that does minor surgical procedures such as the removal of skin lesions, moles and the like. None of our seriously wounded people travel through there.
JACQUELYN HOLE: So for the 102 soldiers who suffered a serious injury fighting in Afghanistan in 2009 and 2010, there is no risk of exposure to tainted instruments.
But the Defence Department will not state how many soldiers are affected by the lapse in infection control procedures at the Al Minhad facility and who now require a blood test to find out if they have been infected.
Air Chief Marshall Angus Houston.
ANGUS HOUSTON: Look, I don't expect there to be any cases because the number of surgical procedures that were conducted there was very, very minimal and I would assess the risk as very low.
JACQUELYN HOLE: It was only last week that the Defence Department issued a warning to staff informing them of the defect in the surgical instrument steriliser and urging personnel who underwent a procedure at the facility that they are at risk of acquiring a blood borne disease.
It is not clear how the lapse occurred and if it was a human or machine error that caused the faulty piece of equipment to continue to operate over a 19 month period throughout 2009 and 2010.
The president of Australia's Infection Control Association, Claire Boardman says such a lapse would be highly unusual in an Australian Hospital.
CLAIRE BOARDMAN: Relatively uncommon. Where it does occur it tends to be because of machine systems failure. It's generally early detected because we do have a number of processes in place for checking prior to use of reusable sterilisation equipment.
JACQUELYN HOLE: What are the risks flowing to patients from such a lapse?
CLAIRE BOARDMAN: The potential risks tend to be around transmission of blood born viruses such as Hepatitis B, Hepatitis C and HIV. In very rare instances there can also be transmission through the re-use of neurological or neurosurgical instrumentations and the risk of CJD (Creutzfeldt-Jakob disease).
JACQUELYN HOLE: Ms Boardman said the 19 month time lapse in the fault emerging was concerning as was the general instruction for defence personnel to have themselves checked for possible infections.
CLAIRE BOARDMAN: We would have early notification through our tracking systems. Most instrumentation through Australian health care facilities, whether it be in peri-operative or surgical settings or dental settings, we have the ability to track and recognise early systems failure.
JACQUELYN HOLE: According to Ms Boardman, infection control standards in the UAE are not as high as in Australia and many of the medical staff come from countries with very little training in this field.
CLAIRE BOARDMAN: Infection control procedures in the United Arab Emirates vary enormously. There's a number of different Emirate regions, they have a combination of public and private hospitals and many of the health support staff are provided by international countries.
Hence, there's variation in practice. I know that the United Arab Emirates is working very hard to improve its infection control outcomes for patients and to closely examine some of these issues.
In Australia we have Australian standards that govern a number of our practices. In the United Arab Emirates currently they don't.
JACQUELYN HOLE: The head of the Defence Force has apologised for the lapse, and Angus Houston repeated his assurance that the risk of serious infection to staff is considered low
ANGUS HOUSTON: I'm disappointed in what happened there and we have taken all necessary measures to improve the governance arrangements at Al Minhad.
ELEANOR HALL: That's the head of the Defence Force, Air Chief Marshall Angus Houston, ending that report from Jacquelyn Hole.
Thursday 9th June 2011
I was asked with other families and scientists to take part in a programme produced by a small crew of students who are studying for their MA in the media. They asked to come to my home and interview me about vCJD and the campaigns goals regarding screening all blood for vCJD.
Here is a photo of me with graduates Fiona Marley Paterson (23) and Kirsty Malcolm (24) who are just about to finish their MA in Broadcast Journalism.
It’s important that young people are aware that vCJD continues to kill in 20011. Many of the victims have been students who developed the disease during their first or second year at university. Nearly every well known college/university in the UK has had a student or associate die of vCJD. I give regular talks to uni and college students so that they are informed about the symptoms and also the background to BSE. Lots of students decide to become blood donors so it’s significant that this section of society is totally informed about the dangers of transmitting vCJD via blood donation.
Its essential that the next generation of young people are also aware that everyone over the aged of 14 years old in the UK has been exposed to BSE and the political corruption behind the biggest public health experiment in the UK’s history. This was a deliberate ongoing experiment which allowed BSE material free reign into the human food and medicine chain. An experiment condoned and encouraged by the Conservative Government its officials and ministers from 1979-1996.
Now we not only face hundreds possible thousands more deaths of vCJD through the ingestion of BSE infected food and vaccines, we also face secondary infection via blood, blood products, tissues, cells organs and operations. In the last weeks over 50 people in the UK have been informed that they are now ‘at risk of vCJD’ because of contaminated instruments being used during their surgery. A blood screening test must be implemented so that all hospital patients are individually screened for vCJD. 
Graduates Kirsty and Fiona were well aware of the risks that our blood supply poses to the UK public and here is a selection of the questions that were asked…
* the risks of vCJD Britain
* is the DoH keeping information from the public and why
* should a blood screening test be put in place
* your experiences having had to deal with the disease first hand
With this blog is a photo of me and students Fiona and Kirsty, also the posters and banners we used during our demonstration to Downing Street on May 12th 2011.
Saturday 4th June 2011
It would appear from this paper to be published this month, that visitors from the USA to the UK have put themselves at risk of developing vCJD. This paragraph below from the paper highlights the risk that BSE/vCJD holds for the global community. When myself, other families affected by vCJD and supporters of this campaign, demonstrate, investigate and confront those responsible for BSE/vCJD we do so on behalf of all of our brothers and sisters from the global family. John Gummer., Kenneth Clarke and those listed on this website must face criminal proceedings for the numbers of people who have been and will be affected by vCJD and the millions of us who were unlawfully exposed to BSE in the food and medicine chain. Food and medicine should be safe for our children and families to ingest.
‘Travellers to the UK were more likely to have spent at least 30 days in the country (24.9%) compared to travelers to any other BSE endemic country. The prevalence and extent of travel to the UK indicate that health concerns in the UK may also become issues for US residents.’
NEWSWISE
CDC Assesses Potential Human Exposure to Prion Diseases
Released: 5/23/2011 3:35 PM EDT
Source:
American Dietetic Association (ADA)
Newswise — Philadelphia, PA, May 23, 2011 – Researchers from the Centers for Disease Control and Prevention (CDC) have examined the potential for human exposure to prion diseases, looking at hunting, venison consumption, and travel to areas in which prion diseases have been reported in animals. Three prion diseases in particular – bovine spongiform encephalopathy (BSE or “Mad Cow Disease”), variant Creutzfeldt-Jakob disease (vCJD), and chronic wasting disease (CWD) – were specified in the investigation. The results of this investigation are published in the June issue of the Journal of the American Dietetic Association.
“While prion diseases are rare, they are generally fatal for anyone who becomes infected. More than anything else, the results of this study support the need for continued surveillance of prion diseases,” commented lead investigator Joseph Y. Abrams, MPH, National Center for Emerging and Zoonotic Infectious Diseases, CDC, Atlanta.”But it’s also important that people know the facts about these diseases, especially since this study shows that a good number of people have participated in activities that may expose them to infection-causing agents.”
Although rare, human prion diseases such as CJD may be related to BSE. Prion (proteinaceous infectious particles) diseases are a group of rare brain diseases that affect humans and animals. When a person gets a prion disease, brain function is impaired. This causes memory and personality changes, dementia, and problems with movement. All of these worsen over time. These diseases are invariably fatal. Since these diseases may take years to manifest, knowing the extent of human exposure to possible prion diseases could become important in the event of an outbreak.
CDC investigators evaluated the results of the 2006-2007 population survey conducted by the Foodborne Diseases Active Surveillance Network (FoodNet). This survey collects information on food consumption practices, health outcomes, and demographic characteristics of residents of the participating Emerging Infections Program sites. The survey was conducted in Connecticut, Georgia, Maryland, Minnesota, New Mexico, Oregon, and Tennessee, as well as five counties in the San Francisco Bay area, seven counties in the Greater Denver area, and 34 counties in western and northeastern New York.
Survey participants were asked about behaviours that could be associated with exposure to the agents causing BSE and CWD, including travel to the nine countries considered to be BSE-endemic (United Kingdom, Republic of Ireland, France, Portugal, Switzerland, Italy, the Netherlands, Germany, Spain) and the cumulative length of stay in each of those countries. Respondents were asked if they ever had hunted for deer or elk, and if that hunting had taken place in areas considered to be CWD-endemic (northeastern Colorado, southeastern Wyoming or southwestern Nebraska). They were also asked if they had ever consumed venison, the frequency of consumption, and whether the meat came from the wild.
The proportion of survey respondents who reported travel to at least one of the nine BSE endemic countries since 1980 was 29.5%. Travel to the United Kingdom was reported by 19.4% of respondents, higher than to any other BSE-endemic country. Among those who traveled, the median duration of travel to the United Kingdom (14 days) was longer than that of any other BSE-endemic country. Travelers to the UK were more likely to have spent at least 30 days in the country (24.9%) compared to travelers to any other BSE endemic country. The prevalence and extent of travel to the UK indicate that health concerns in the UK may also become issues for US residents.
The proportion of survey respondents reporting having hunted for deer or elk was 18.5% and 1.2% reported having hunted for deer or elk in CWD-endemic areas. Venison consumption was reported by 67.4% of FoodNet respondents, and 88.6% of those reporting venison consumption had obtained all of their meat from the wild. These findings reinforce the importance of CWD surveillance and control programs for wild deer and elk to reduce human exposure to the CWD agent. Hunters in CWD-endemic areas are advised to take simple precautions such as: avoiding consuming meat from sickly deer or elk, avoiding consuming brain or spinal cord tissues, minimizing the handling of brain and spinal cord tissues, and wearing gloves when field-dressing carcasses.
According to Abrams, “The 2006-2007 FoodNet population survey provides useful information should foodborne prion infection become an increasing public health concern in the future. The data presented describe the prevalence of important behaviors and their associations with demographic characteristics. Surveillance of BSE, CWD, and human prion diseases are critical aspects of addressing the burden of these diseases in animal populations and how that may relate to human health.”
The article is “Travel history, hunting, and venison consumption related to prion disease exposure, 2006-2007 FoodNet population survey” by Joseph Y. Abrams, MPH; Ryan A. Maddox, MPH; Alexis R Harvey, MPH; Lawrence B. Schonberger, MD; and Ermias D. Belay, MD. It appears in the Journal of the American Dietetic Association, Volume 111, Issue 6 (June 2011) published by Elsevier.
In an accompanying podcast CDC’s Joseph Y. Abrams discusses travel, hunting, and eating venison in relation to prion diseases. It is available at http://adajournal.org/content/podcast.
American Dietetic Association (ADA)
Name and Address
American Dietetic Association (ADA)
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