Monday October 20th 2014
The Government has rejected calls for further research and safeguards into vCJD the human form of mad cow disease. It has dismissed the significant and essential recommendations that an Inquiry by influential MPs from the Science and Technology Committee made in their report. (Published 24th July 2014.)
The MPs took a detailed look at Britain’s blood supply and the very real risk that human BSE is being passed on by blood donors who are unaware they are carrying the infection.
Two essential recommendations the Inquiry members made was a large scale vCJD blood prevalence study in the UK within 12 months, to find out how many in the population have been exposed to BSE. The second recommendation was research into dementia, amid concerns that CJD is being mis-diagnosed particularly in the elderly. The government has rejected both of these stating there is no test for vcjd and the second that funding is not available to explore just how many people with dementia are really dying of vcjd.
I challenged this very strongly, there are and have been tests but these have been veoted by the Department of Health. Myself and other families affected by vCJD tried to send our late family members blood samples to foreign independent scientists developing screening tests for vcjd. We were intimidated and blocked from doing this, the Department of Health control all blood and tissue samples.
I appeared on BBC Radio just thirty minutes after the report was published, late on Friday evening. (see link above)
It the usual tactic by Whitehall spin doctors a good time to bury bad news.
The UK population face a deadly potential epidemic on our doorstep which was highlighted repeatedly within the Inquiry’s published report.
Every time this campaign and experts present facts about the ticking health time bomb that is human BSE and demand action, it is dismissed and pushed aside by the authorities.
This is not about lack of funding this is all about protecting those responsible for BSE and its deadly ongoing consequences.
Hospital patients are not screened for vcjd, blood donors are not screened for human BSE, and with upwards of 60,000 of us carrying or incubating the disease, Human BSE is being re-cycled again and again within the wider population.
it will be re cycled again and again within the wider population.
I remain determined and upbeat, my evidence is now in the archives of Hansard my book selling well on Amazon, my investigations on track and gaining more momentum.
When Andrew was dying he asked me to find out who was responsible for his illness and also to protect other families, I continue to honour those promises as a mother, campaigner and journalist.
These are the recommendations which were rejected by the Government.
1. A recommendation that the Government begin a large scale vCJD blood prevalence study in the UK within 12 months ( Conclusion paragraphs 14/15)
2. A recommendation that the Government conduct immediate audit on those ‘at risk’ of vCJD. ( see Conclusion Report paragraph 18)
3. Calls for the Government to back research into atypical dementia- amid concerns that CJD is being mis diagnosed in the elderly (Report Conclusion paragraph 21)
4. Criticism of SABTO ( the advisory committee on the Safety of Blood, Tissues and Organs) for its ‘relaxed’ approach to vCJD in the light of recent evidence as one in every 2,000 people could be infected with vCJD without showing any symptoms. (Conclusion Report paragraph 22)
5. Criticism of the Government for its current attitude ‘ our fear is that the Government current attitude is driven less by the available scientific evidence than by its optimism that vCJD is no longer a threat to public health that it once was. In the current economic environment this attitude is not surprising. However its is not justified for all we know the storm may well be on-going.’ (Report Conclusion paragraph 23)
Monday 2nd April 2012
Below is a request from the Red Cross in America asking people affected by cjd and family members to give blood samples to test for the disease. The technology is there to screen blood and yet its remains a tool used behind closed doors and in secrecy. The US families and victims participating in this research have been told they will never be informed of its findings.
Though the Red Cross state these tests are not ‘certain’, I understand that these tests are very accurate. I have been in contact with a variety of individuals suffering from neurological symptoms who with the support of their Consultants have had their blood screened for vCJD.
Many of these patients have given me documentary evidence of this testing and the results which included genotypes. So the test is being used proactively by scientists and medics across the USA and UK.
Why can’t this research by the American Red Cross and many other similar projects taking place be open and transparent? This would dispel the many myths and fears surrounding the disease and give patients and their families the control and autonomy they need over their lives and illness.
Here in the UK over 350 people have donated their blood for many decades who have since succumbed to sCJD, Older people can present with having sporadic CJD when in fact it’s vCJD the result of ingesting BSE infected material. Dozen of younger blood donors have also died of vCJD. This means hundreds possibly thousands of recipients of this blood/blood products/vaccines/medicines derived from CJD victims blood donations have never been officially traced or informed.
We face a ticking health time-bomb regarding secondary infection of CJD via blood. Hopefully publication of the findings by the American Red Cross will be forthcoming and open to public and press scrutiny. It’s a pity that any individuals taking part in this research will not be given the choice to know whether they carry or incubate the disease as it could mean they will continue to give blood with the potential to pass on and re cycle the disease.
REDCROSS REQUEST USA March 2012
The American National Red Cross (Red Cross) Jerome H. Holland Laboratory for Biomedical Research in Rockville, Maryland is collecting small volumes of blood from patients afflicted with various forms of transmissible spongiform encephalopathy’s (TSE)/prion diseases and their blood-related family members. The purpose of the research is to build a blood sample repository for studies on ways to detect the presence of prion protein or other markers of the disease in human blood.
Recent epidemiological evidence indicates that blood of patients with variant form of Creutzfeldt-Jakob disease (vCJD), that is prevalent in the United Kingdom, is infectious.
The questions about the possibility that blood from patients with the sporadic and familial forms of TSE might also be infectious is still not resolved even though 10 years of searching has not revealed any examples of blood-related transmission from patients with these non-variant forms of disease.
The development of a blood test to identify affected people in the pre-clinical stage of disease could eliminate the uncertainty about TSE-related blood safety. Some tests have been successful for testing animals infected with TSEs, but in order to know if any test will be reliable in humans, we need to test human blood.
CJD patients and their families are the only source of blood specimens that can answer this question, and we therefore ask you to support our effort.
If you or an affected relative is interested in participating, please contact the name listed below. No more than 50 ml of blood should be collected at a location convenient to you through your own arrangements with your physician and the blood sample should be sent to the Holland Laboratory at no cost to you. The samples will be processed and stored, frozen indefinitely, at the Holland Laboratory in Rockville, Maryland. The Red Cross will provide access to only designated research staff at the Red Cross or other research groups that have provided convincing evidence for a test to detect TSE in animals.
Participating individuals will NOT be notified about test results because the tests that will be performed on blood are experimental and their significance is not known and will remain uncertain for some years to come. The CJD foundation will be notified of any publications coming from our research.
Dr. Larisa Cervenakova; Phone: 301-738-0765; e-mail: email@example.com
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,
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
Wednesday 21st 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.
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.
3 February 2011 Last updated at 01:22
Blood test for vCJD ‘could identify carriers’
By Sonya McGilchrist BBC News health reporter
A blood test for variant CJD has been developed by British scientists.
Currently patients suspected of having the human form of BSE have to undergo a series of tests, including a brain biopsy, to confirm a diagnosis.
The new test, reported in The Lancet, offers the chance of earlier diagnosis and potentially the ability to screen donor blood.
But further studies are needed before it can be widely used to screen healthy people who may be silent carriers.
Variant CJD or vCJD is the human form of BSE – “mad cow” disease. It affects the brain and is believed to have passed from cattle to humans through infected food.
A previous study suggested one in 4,000 Britons could be incubating the incurable degenerative disorder without symptoms.
CJD causes the brain to develop a spongy texture known as spongiform encephalopathy.
Early symptoms include anxiety, depression and tingling pains. Doctors often do not realise that a patient has the brain condition until other features occur, such as difficulty with movement, or loss of mental abilities.
At present, there is no treatment for variant CJD and the diagnosis is often made when patients are terminally ill.
The new test was tried on 190 blood samples, of which 21 had variant CJD. The test picked up 15 of the samples with variant CJD – a 71% success rate.
It did not produce any “false positives” – showing that someone had CJD, when they did not.
Professor John Collinge of the Medical Research Council is one of the doctors involved in the research. He said that he would begin using the new test on patients in his clinic straight away.
He said: “An earlier diagnosis will give patients and their families more time to plan what they would like to do in the time left available to them.”
Professor Collinge is currently working on research to treat the disease with antibodies.
He told the BBC that the first clinical studies involving patients could be carried out as early as next year.
A test that provides an early diagnosis will become even more significant if treatments for the disease become available.
The development was welcomed by Peter Mills, whose daughter Holly was diagnosed with variant CJD in 2003.
He described the test as milestone, saying: “This lifts us into the next stage and takes us to a position of hope. It gives us great confidence that therapies to treat the disease are a realistic prospect – but this test has to come first.”
The new test could provide more information on how many people have variant CJD and be used to screen for the disease.
However, further large scale studies on populations where the disease is not present would be needed before it could be used as a screening test.
The lead author of the research, Dr Graham Jackson of the Medical Research Council’s Prion Unit, said: “This test could potentially go on to allow blood services to screen the population for vCJD infection, assess how many people in the UK are silent carriers and prevent onward transmission of the disease.”
Patients and their families can find out more about the new development by looking at the National Prion Clinic website.
Chris James, from the Haemophilia Society said they would push for the test to be used as soon as it is clinically available: “The Haemophilia Society has long called for tests to be offered, in combination with pre and post-test counselling, to people with bleeding disorders who have been told they are at risk for public health purposes in relation to vCJD.”
Health Protection Agency response to blood test for vCJD
Consultation on a new vCJD test for blood donors
The Health Protection Agency commissioned, on behalf of the Department of Health, a consultation to look at the social and ethical implications of a blood test for variant CJD. There is currently no blood test to detect vCJD infection in people who appear to be well. Such tests may soon be developed, and this consultation aimed to seek views about how these tests for vCJD could be used once they become available.
A vCJD test could be used to screen blood donors, allowing the blood services to prevent blood from people with positive tests from being given to patients. The consultation explored some questions and concerns about introducing a blood test, including:
1. Should a test for vCJD be introduced when it is not known whether people with positive test results would ever develop symptoms of vCJD, and if they would, how long this would take?
2. Should the UK blood services always tell donors if their vCJD tests are positive? And how should donors’ GPs be involved?
3. If donors knew that they would be tested for vCJD, and that they would be told if they tested positive for vCJD, would they be put off giving blood.
Below is the latest news from Amorfix the company who developed a blood screening test for vCJD. Their most recent trials using a blood sample from a vCJD victim failed……totally…? WHY HAS THIS HAPPEND?
These negative results have come as a shock to the medics and scientists involved in these trials, also to campaigners like myself who have followed Amorfix who were striving to develop and implement mass blood screening tests for vCJD.
This apparent wipe out of Amorfixs scientific/medical research into vCJD blood screening raises many significant questions and challenges. Not least the accessibility and availability of vCJD blood and other samples given to independent scientists outside the remit of the NHS and Department of Health. There is a complete lock down and ownership of vCJD human blood and body samples by the UK Government, which echoes the travesty surrounding BSE.
Throughout the scandal BSE infected material was owned by the government, this hampered any outside independent scientific support which helped to keep the source and originators of the infection protected and in-house. This culture of secrecy and cover ups killed my only son. The lack of transparency and openness encouraged by the Uk governent which sourrounds all aspects of vCJD including the Amorfix blood screening tests highlights the question……
‘DOES THE GOVERNMENT REALLY WANT UK BLOOD DONORS TO BE INDIVIDUALLY SCREENED FOR VCJD?’
Was the Amorfix test viable? Was its development scuppered by the UK Department of Health to protect the architects of BSE? Can the rogue prions that cause vCJD be detected in human blood? Are blood screening tests already BEING USED SECRETLY in the UK? Why are the Government and its Whitehall cronies so determined to stop any individual blood screening test for vCJD?
In October 2009 the Amorfix test ‘Detected prions in blood from non human primates, that had been infected orally with BSE’ this trial also ‘Detected prions in a clinical and pre clinical primate’ which means the test could evaluate the disease during its terminal as well as its incubation/carrying phase. Amorfix were considered to be the lead company in the world regarding their vCJD blood screening test with its high levels of ‘Specifity and hundred per cent sensitivity.’ It had success when it tested 39,000 blood donors in France and the support of the French Government.
But when it came to testing human blood samples supplied from a secret source by the UKs DOH it has failed…and was not able to detect any rogue prions in the blood.supplied ……something is not adding up…and something is very amiss……..
Before I discuss and answer the above questions, using my experiences, findings and the facts. I must qualify that I have no financial, political or corporate gain supporting any test or medical research in the field of vCJD. I am a mother, campaigner, journalist a educated and aware middle-aged woman. One of the campaigns goals is to prevent future and further deaths of vCJD via the UK and global blood supply. I and other families affected by vCJD have no other agenda…..so the facts and experiences that I am going to present to you now are truthful, honest and transparent. I have no one pulling my strings, no threat of loosing my career or funding if I speak the truth…..I cannot be bought or silenced….these are the facts….. and the truth ……
Qualities that have been continually compromised and besmirched by the Uk government and its Whitehall cronies who do not under any circumstances want blood donors individually screened for vCJD.
Amorifx is not the first or the last company who have been involved in the development of blood screening tests for vCJD. Here in the UK we face a ‘Secondary wave’ of victims of vCJD through blood, blood products and medical procedures, as people can ‘silently carry vCJD’ and pass it on through medical proceedures/iinterventions. It makes sense to be able to use a simple blood test to screen individuals every time they give blood, have a invasive medical procedure, operation or donate cells, tissues and other organs. So why in 2010 isn’t this happening?
Why isn’t a test already in place and routinely used to screen our blood donors? Politics and the need to keep a lid on evidence and the source of BSE/vCJD have always been paramount before the safety and health of the UK public. Approximately 81 million units of blood every year is tested for HIV and Hep C. So a screening test for vCJD is a must when at least 14,000 of the UK population could be silently carrying the disease. We exported BSE to every country in the world so our global blood supply is also at risk. The Uk spends tens of millions of pounds every year trying to keep our blood supply safe ( its not working one of the latest victims of vCJD is dying after receiving a blood transfusion in 2003), a blood screening test would be cost effective and simple to implement.
I need to explain to you how tests that could be routinely used are being held back deliberately by the UK Government.
Over the last few years Amorfix has been at the forefront of cutting edge scientific research in the development of prion assay tests (screening tests) for vCJD and diagnostic tools for forms of dementia, such as Alzheimer’s. During the trials for their vCJD test they have screened with the support of the French Government over 39,000 blood donors anonymously in Montpellier France; their test was successfully defined inside and outside the lab. As well as the backing of the French Government the UK Government also put Amorfix under contract….why? If the test was so poor and likely to fail? Once Amorfix signed this contract they were unable to speak openly to the media, they were effectively gagged, so were unable to complain openly about their dealings with the Department of Health. From various reputable sources and my own experiences I discovered continual blocking, delays and political intrigues surrounding the validation of the vCJD test. Increasingly I heard of the frustrations and then fear that the test would never see the light of day from individuals within the Deaprtment of Health who back Andrews campaign as well as from scientists and medics involved.
Again and again the test completed trials set by the UK Governments strict procedures and guidelines, so that the Amorfix test continually enhanced the specifity of their test…’99.95 percent exceeding the 99.85 percent recognised by the Blood Transfusion service’ The Canadian Company initially were led to believe it would only be a short time before the test would be validated and implemented within the UK blood transfusion service.
Why would expectations be raised to such a level by the UK Department of Health if the test was not viable? Why did Amofix press releases show increasingly positive results declaring ‘Amorfix has developed the most sensitive and specific test in the world’?
The biggest stumbling block seemed to be accessibility to human vCJD blood samples; Amorfix had proved inside the lab with spiked brain material and with their trial on blood donors in France that the test was successful. What they now needed for total UK validation was human vCJD samples.
This is where I and other families who have been affected by vCJD tried unsuccessfully to help……
Department of Health and its Whitehall cronies repeatedly stalled and blocked the validation of the test by withholding blood samples from vCJD victims. I tried without success to hand over some of my Andrews blood to Amorfix, as did other UK families. We as families affected by vCJD were very aware of the scarcity of these samples but after reflection, consideration of many research papers and talking to experts not connected with Amorfix. We all believed that Amorfix test was well on the way to developing an individual blood screening test, that would eventually save many lives. We also knew that helping companies to develop such tests would also eventually lead to treatments and more understanding of the disease. Too many scientists involved in prion research in the UK are being funded by the very organisations/people and government departments that allowed vCJD to flourish in the first place.
Too many companies involved in the BSE scandal now hold the purse strings and fund many of the top research scientists who are responsible for storing human vCJD. blood, brain and body samples.
Familes knew that if we were involved in the handing over of our loved ones blood that they would be bonafide samples and could be double checked for authenticity.
After months of negotiation between victims families, Department of Health, Whitehall and Amorfix, myslf and other families were ready to hand over those precious blood samples from our children to the company based in Canada.
The next step would hopefully be validation and the rolling out of individual screening tests for the UK blood supply. No family member including myself had any financial political or corporate gain from this process. Remember these are the last physical remains of my beloved boy…I only considered giving these to Amorfix because I believed a blood screening test would result that could save lives and prevent further deaths.. no way would I have considered this option without talking, discussing and finding out at length everything I could about prion assays and screening tests.
I was about to sign the contract when I was informed by a Scientist that works and is funded by the Department of Health and those other shady companies that my Andrews blood was not stored correctly. My beloved sons blood couldn’t be used by Amorfix or any similar test. At the same time another family like me who had also worked for weeks to retrieve their son’s blood was told a similar story….. families who independently wanted to supply human vCJD blood samples…to Amorfix were suddenly told at the last minute that none of our loved ones blood would be suitable only blood samples supplied by the Department of Health from a secret source would be?
For me this was a devastating blow…why was I not informed of this at the beginning of negotiations? Why waste months of talking, arguement with medics and government officials if my Andrews’s blood was not appropriate? I had spent long weeks and months talking and investigating every avenue of this procedure. I admit when I heard this devastating news I cried for hours…..once again it appeared that a door had been slammed in my face. But I have bounced back and remain determined.
Also I am not a scientist and have no idea how or in what manner my Andrews blood has been stored.?
I started to feel very worried about the Amorfix test and the likelihood that it would ever become validated! I also began to smell a rat………!. Lots of things were just not adding up…..?
During this time another family whose son was still alive but very ill with vCJD offered to help and agreed for him to give blood to Amorfix . This would mean the provenance and honesty of the sample would be without doubt and not compromised. I was going to be present and even planned to take my camera to film the victim and his family. I wanted to make sure this blood would be bonafide and there would be no more delays. The twenty one year old victims mum said to me ‘ Its too late to help my son but I want to make sure that other mums don’t loose their child to vCJD and I want to help our Canadian friends’. Over a period of days and then weeks I arranged for blood to be taken from this young man. Once again Whitehall’s cronies, stalled, prevaricated and brought every possible piece of bureaucracy into play. When an expert finally went to this young mans home to take blood he was dying, his veins had collapsed and no blood could be taken. These continued attempts to sabotage the Amorfix test, to waylay and disrupt grieving families from trying to protect the Uks blood supply…..stinks! It has convinced me that the UK government doesn’t want a blood screening test for individual blood donors…as they have over the last months and years done everything possible to prevent this occurring…..
I and other family members have no idea where the vCJD blood samples which were eventually given to Amorfix by the UK Government came from? How were these samples stored? Can the provenance be verified? Why was these samples stored correctly and in sufficient quantities when my Andrews and other victims were not?
The intimidation I and other families experienced during these last months as we have tried to support a blood screening test has been disgusting. I have personally been bullied by experts who work for the Department of Health who tried repeatedly to manipulate me and it has not be in the best interest of the UK publics health. I have been subjected to heated arguements, anger, dismissive comments about my intellect to hours of persuasive claptrap from the most senior medics employed by the Government asking me not to hand over my Andrews blood samples to Amorfix for testing.
When Whitehall found out that nothing they could do or say would prevent myself and other families from handing over our loved ones blood samples …we were suddenly told that all the samples had either been compromised, were not in sufficient quantities or stored correctly to be used by Amorfix.
Professor Richard Knight CJD Unit told one family ‘ I beleive from as early as 2000 the WHO has recommended that all vCJD blood samples should be stored in a chemical called citrate so that is helps in the development of prion assays’ (screening tests for vcjd)
Most of the blood samples which are being taken from UK vCJD victims are being stored in a powerful chemical called EDTA which compromises screening tests…..why? This is not following WHO guidelines and means that screening tests will be invalid.
I have discovered that when blood samples taken from UK vCJD victims have been stored in citrate many are not in sufficient amounts or have been stored as whole blood and then frozen, both these procredures can hamper and compromise the future development of screening tests. Why is this happening?
BECAUSE IF OUR BLOOD SUPPLY WAS ROUTINELY SCREENED FOR vCJD THE SECRETS OF BSE/VCJD WOULD BE REVEALED, WE WOULD KNOW THE PREVALANCE OF VCJD IN THE POPULATION AND WE COULD ALSO TRACE BACK TO THE EXACT SOURCE OF THE INFECTION.
This is why filtering of blood is being pushed as the only option to safeguard our blood supply, THIS IS NOT TO PROITECT OUR FAMILIES BUT TO PROTECT THE ARCHITECTS OF BSE AND THE ESTABLISHMENT FIGURES WHO CREATED AND CONDONED THIS HORRIFIC DISEASE…. the cover up continues…..
Once again political careers and the freedom of those named and shamed on this website are being put before the human health of not only the UK population but our global community.
Kenneth Clarke now sits at the head of our justice department, John Gummer has been made a Lord and now a blood screening test that could have saved lives has been suspended.
A test that had ‘unprecedented success’…totally failed when given secret blood samples from the Department of Health supplied by the same puppet masters who created and enabled BSE in the first place. Those that are culpable would be proved to be culpable by a blood screening test and the Government will do everything in its power to prevent such tests developing or being implemented.
If there is no test currently available for vCJD why are family members, brothers, sisters, parents who have lost are loved ones to vCJD, encouraged to give blood for research at London hospitals?
I have given at least 6 vials of blood for this research. What use can my blood be if there is no blood test? I have filmed this process for a forthcoming documentary.
Why are haemophilliacs who have been exposed to vCJD through blood products made to give blood for research every couple of months? Some haemophilliacs have been threatened with their medicine being withdrawn if they don’t continue to give blood for this research. They are never told the results of this research which remains unpublished and secret.
Why is blood being taken every few weeks from current victims of vCJD to ‘TEST FOR THE LEVELS OF ROGUE PRIONS IN THE BLOOD?’, if there is no viable test and rogue prioins cannot be detected?
I been told by experts and scientists that ‘Of course there are tests available which the government and department of health are using but these are being kept behind closed doors and the results top secret, they don’t want a mass screening test, it would topple many in the establishment’
A top medic in the UK has told me ‘We have a diagnostic test that can show a person has vCJD and we are using it.’
Once again the architects the enablers of BSE and its lethal pathogen vCJD have been working their particular poison, manipulating events, officials and government policy, in an effort to protect their rocky freedom and careers…once again more innocent people will die…..once again the lies and cover-ups that unlawfully killed so many people …..Is weaving its corruption through our cabinet and Government….
Unfortunately in the next weeks, months and years more people will die of vCJD through blood, blood products and medical procedures…if blood screening tests for vCJD had been allowed to openly openly flourish and develop….lives could and would have been saved…..
Kenneth Clarke, John Gummer and their cronies and also other individuals who I am also pursuing….will have more innocent deaths on their hands……..and it will not wash away or be forgotten by myself, other families, fellow campaigners and the UK public……
I and my supporters remain undefeated, determined and implacable…and I with my coleagues will continue to expose those responsible ……..
Corporate update on vCJD test development
TORONTO, May 31 /CNW/ – Amorfix Life Sciences (TSX:AMF), a company focused on treatments and diagnostics for misfolded protein diseases, provides an update on the development of a blood test for vCJD, one of its six product development programs.
The company has been successful in developing versions 2 and 3 of the test, which differ in the sample preparation steps, and both are four times more sensitive than the first version which underwent testing with vCJD patient blood in December. The company has also been successful in obtaining a rare blood sample from a person in the clinical phase of vCJD. The new versions of the EP-vCJD tests were used to test this sample and it was scored negative by both versions of the test.
“Although we were able to achieve unprecedented sensitivity with brain prions diluted into blood, we have been unable to detect blood prions with the latest versions of the test,” said Dr. Neil Cashman, CSO of Amorfix. “At this stage, we believe our other product development programs are a better use of our resources, although future research may prompt reevaluation of this assessment.”
The Amorfix test and those of its competitors were developed using blood samples spiked with brain prions from vCJD patients. Amorfix successfully developed the most sensitive and specific test in the world and was the first to access human samples through the UK National Institute of Biological Standards and Control process. Subsequent significant improvements to the test in the last five months did not yield positive results, and the company has reached an impasse until scientific understanding improves or more vCJD patient blood is available. Accordingly the company will suspend the commercialization of the vCJD project allowing a more focussed effort on the development of novel therapeutics and diagnostics which include:
– Our ProMIS(TM) antibody program targeting disease specific epitopes for both therapeutics and companion diagnostics for cancer and other misfolded protein diseases;
– Growing the revenue from our A(4) amyloid testing service for cell culture, tissue and blood in animal models of Alzheimer’s disease (AD);
– Development of a human Alzheimer’s test adapting the A(4) test protocol to detect aggregated Abeta, the hallmark of the disease, in
human plasma and cerebro-spinal fluid;
– The advancement of our novel antibodies and vaccines for the treatment of ALS and AD; and
– The contract for the development of a liver cancer early detection assay, which is nearing completion.
Amorfix Life Sciences Ltd. (TSX:AMF) is a theranostics company developing therapeutic products and diagnostic devices targeting misfolded protein diseases including ALS, cancers, and Alzheimer’s Disease (AD). Amorfix utilizes its computational discovery platform, ProMIS(TM), to predict novel Disease Specific Epitopes (“DSE”) on the molecular surface of misfolded proteins. Amorfix’s lead programs include therapeutics and companion diagnostics for cancers and antibodies and vaccines to DSEs in ALS and AD. Amorfix’s proprietary technology enables it to specifically identify very low levels of misfolded proteins in a normal sample. The Company’s diagnostic programs include an ultrasensitive method for the detection of aggregated Beta-Amyloid in brain tissue and blood of animal models of AD, months prior to observable amyloid formation, and a blood screening test for liver cancer. For more information about Amorfix, visit www.amorfix.com