In 2007 my beloved son Andrew died from vJCD aged just 24. Since then I have created a campaign to find out how and why he died and who is to blame for this terrible disease. This is my blog containing much of the material I have collated and the history of the campaign.
Monday 20th October 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 vetoed 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 on-going 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.
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 13th October 2014
“Who Killed My Son” Author to Appear at Bookfest
An author whose son died of the human form of mad cow disease is appearing at Portsmouth Bookfest in November.
Christine Lord wrote “Who Killed My Son” after Andrew, died in 2007 aged 24 from Variant Creutzfelt-Jakob Disease (VCJD). Her book features real-time diary entries covering Andrew’s last days and Christine’s investigations as a journalist into what she refers to as the “the biggest political and health scandal of modern times.”
Christine will be at Southsea library in Palmerston Road on Saturday November 1st from 12-3pm talking about the book which has been a best-seller on Amazon and will also be and promoting her campaign on safe food and medicine.(photo of Christine with Jenni Murray Radio 4 Woman’s Hour)
Christine has investigated the origins of the BSE (bovine spongiform encephalopathy) scandal, and its deadly impact on human health. Her work also explores the on-going risk posed by contaminated blood and medical equipment and the urgent need for a screening test for blood donors. Her findings have been the subject of reports and documentaries in the UK and internationally, working alongside broadcasters such as the BBC, MBC, Channel 4, Channel 5, Sky and Channel 7 Australia. Christine’s work has also been featured by national newspapers including The Sunday Times, The Daily Mail and The Daily Mirror.
Christine said, “Profits from book and kindle sales go back to the campaign to raise awareness and support thousands of people affected across the UK and globe. With one in 2,000 of us carrying vcjd and with incubation periods upwards of 50 years, we face a ticking health time bomb especially as human BSE can be transmitted via blood and donated blood is not currently screened for vcjd.”
For more information, go to http://www.justice4ancy.com/
Monday October 6th 2014
Canada has only three days blood supply left in the country, due to lack of blood donors caused by the risk of the human form of mad cow disease. (See link below from CBC News in Canada).
Canada’s blood services are facing a critical shortage, with concerns how Canada would cope if there was a large emergency.
This highlights how essential it is for the UK government to stop blocking and delaying funding and support for a individual blood screening test for vcjd (human BSE). Their deadly inaction is creating life threatening situations world-wide.
Residents in Canada who have lived, worked or travelled to the UK from 1980 till 2007 are not allowed to donate blood to fellow Canadians, because they may be carrying or incubating the deadly brain disease and pass it onwards to recipients. Any person who has been to the UK during those time frames is deemed ‘at risk’ of carrying, incubating Human BSE.
Millions of people worldwide are banned from donating blood due to their connections to the UK. Once a blood screening test for vCJD is implemented, it could mean many members of the public who are currently banned could resume donating their blood. An individual blood screening test would mean that all donated blood is free of the rogue prions that cause vCJD. With this blog is a photo of me and Pete Buckland outside the Houses of Parliament, London after challenging the government over their lack of support for a blood test for vcjd. Pete lost his son Mark aged 32 to human BSE contracted from a contaminated blood transfusion. If a screening test for vcjd had been in place Mark would never have died!
Canadian Blood Services ban on those who lived in Britain not fair, says Albertan
1st October 2014
Former British resident surprised screening practices haven’t improved over the years
Friday 19th September 2014
This latest research below has defined the dosage of donated contaminated blood which may be needed to infect a human recipient with CJD.
It’s a terrifying scenario as incubation periods in human blood can vary as can the rate of infectivity.
A mean infection rate of 78 per cent is very high but the true figures could be significantly higher. This research shows an individual blood screening test for Human BSE is essential. Otherwise our blood banks will never been free of the rogue prions that cause the human form of mad cow disease. All blood donors and patients undergoing medical procedures should routinely have their blood screened for vCJD.
Yet the UK department of health and the UK government continue to ignore growing research which shows that one in 2,000 of us carry Human BSE. Tens of thousands of UK citizens who may carry vCJD donate blood and undergo medical procedures.
By with-holding funding and not support a blood test, the UK Government are condoning the re-cycling of VCJD in our blood supply and condemning more innocent people to a horrific avoidable disease.
A Development of Dose-Response Models of Creutzfeldt-Jakob Disease Infection in Nonhuman Primates for Assessing the Risk of Transfusion-Transmitted variant Creutzfeldt-Jakob Disease
Yin Huanga, Luisa Gregorib, Steven A. Andersona, David M. Asherb and Hong Yanga# + Author Affiliations
Office of Biostatistics & Epidemiology, U.S. Food and Drug Administration, Silver Spring, Maryland, USAa Office of Blood Research and Review, U.S. Food and Drug Administration, Silver Spring, Maryland, USAb
Estimates for the risk of transmitting variant Creutzfeldt-Jakob disease (vCJD) via blood transfusion have largely relied on data from rodent experiments, but the relationship between dose (amount of infected blood) and response (vCJD infection) has never been well quantified. The goal of this study was to develop a dose-response model based on nonhuman primate data to better estimate the likelihood of transfusion-transmitted vCJD (TTvCJD) in humans. Our model used dose-response data from nonhuman primates inoculated intracerebrally (IC) with brain tissues of patients with sporadic and familial CJD. We analyzed the data statistically using a beta-Poisson dose-response model. We further adjusted model parameters to account for the differences in infectivity between blood and brain tissue and in transmission efficiency between intravenous (IV) and IC routes to estimate dose-dependent TTvCJD infection.
*** The model estimates a mean infection rate of 76% among recipients who receive one unit of whole blood collected from an infected donor near the end of the incubation period. The nonhuman primate model provides estimates that are more consistent with those derived from a risk analysis of transfused non-leukoreduced red blood cells in United Kingdom compared to prior estimates based on rodent models.
IMPORTANCE TTvCJD was recently identified as one of three emerging infectious diseases posing the greatest immediate threat to the safety of the blood supply. Cases of TTvCJD were reported in recipients of non-leukoreduced red blood cells and coagulation Factor VIII manufactured from blood of UK donors. As the quantity of abnormal prions (the causative agent of TTvCJD) varies significantly in different blood components and products, it is necessary to quantify the dose-response relationship for a wide range of doses for the vCJD agent in transfused blood and plasma derivatives. In this paper we suggest the first mechanistic dose-response model for TTvCJD infection based on data from experiments with nonhuman primates. This new model may improve estimates of the possible risk to humans.
FOOTNOTES ↵#Address correspondence to Hong Yang, Hong.Yang@fda.hhs.gov Copyright © 2014, American Society for Microbiology. All Rights Reserved.
Tuesday 2nd September 2014
Today would have been my only son Andrews’s birthday, time doesn’t heal and hasn’t taken away my determination for justice and transparency in all aspect of Human BSE for its thousands of past present and unfortunately future victims.
But most of all today is about remembering my handsome, gentle, lovely Andrew the world is a much sadder place lacking my son’s kindness, vivacity, integrity and talent.
FROM ONE WHO STAYS
How empty seems the town now you have gone!
A wilderness of sad streets, where gaunt walls
Hide nothing to desire, Sunshine falls
Eery, distorted, as it long had shone
On white, dead faces tombed in halls of stone.
The whir of motors, stricken through with calls
Of playing boys, floats up at intervals;
But all these noises blur to one long moan.
What quest is worth pursuing? And how strange
That other men still go accustomed ways!
I hate their interest in things they do.
A spectre-horde repeating without change
An old routine. Alone I know the days
Are still born, and the world stopped, lacking you.
Amy Lowell (1874-1925)
Tuesday 12th August 2014
Currently there are several foreign scientists and researchers developing individual blood and urine screening tests for vCJD.
These experts rely on the support of the UK Department of Health and Government for their tests to become validated to screen large numbers of the public. During this fraught process it’s very easy for the UK Government to scupper the research, issues like funding, withholding of blood samples from vCJD victim’s and many other reasons can be used to make sure that a blood/urine screening test is never within the public domain.
In the seven years since my Andrew was unlawfully killed, I have supported and watched as many successful developments/ tests/potential treatments for the human form of mad cow disease fall by the wayside due to continual blocking/delaying by Whitehall. The Department of Health and UK government make all the right public noises and moves but ultimately have sabotaged all of these tests, to protect those responsible for BSE and the legal ramifications for those individuals once a test for prevalence is implemented. The UK government is also mindful of the legal responsibility they would have when tens of thousands of people in the UK were tested positive and found to be carrying human BSE. It’s a can of worms Whitehall doesn’t want opened. Meanwhile our families and yet more innocent people become exposed to blood not screened for vCJD and medical instruments contaminated with rogue prions that cause the lethal brain wasting disease, vCJD.
With evidence from the Health Protection Agency that one in 2,000 of the UK carry vcjd its time for action. But the Department of Health continues to thwart any tests for vCJD becoming available for mass screening of our blood supply.
Olivier Andreoletti and his team of medics in France is one of many foreign researchers who are perfecting a blood test for vCJD. Olivier told me:
‘I do hope that the work we performed will be of some help for the development of a blood vCJD screening programme. Such programme could allow the screening of blood donors and/or the identification of person that are incubating the disease.
I also hope that some therapeutics will become available soon and will allow the treatment of these asymptomatic persons.’
Another expert Claudio Soto from Texas in the USA has developed a urine/blood test for vCJD Claudio’s team also need the support of the UK and USA government for their work to proceed.
Claudio told me it would take several years for the test to be used publicly, however this time frame is extended by the many obstacles that are put in the way by the UK Department of Health, who delay any research conducted outside the UK and its governments total control. Claudio told me:
‘We are trying to get approval of this test for screening prions in
blood or urine to be used as a way to detect prion contaminated samples in blood
banks and to estimate the hidden prevalence of vCJD infection. We are doing our
best, but it will likely take several years before the test can be used
I will continue to fight for justice, transparency and a test to screen all donated blood.
Chapter 42, page 242 Who Killed my son?
‘Andrew I will continue to fight for the truth. On your behalf I will fight for the millions of mothers and fathers whose families were also exposed to BSE, and for every child’s right to safe food and medicines, the right for every child to have a healthy and long life.’
Thursday 24th July 2014
Today the Science and Technology Committee published its report After the Storm? UK Blood safety and the risk of variant Creutzfeldt-Jakob Disease. I gave extensive oral and written evidence and all the committee members read my book Who killed my son? during their preparation for the Inquiry.
The report is scathing and highly critical of the UK governments ‘casual’ attitude towards vCJD and public health and safety. They have made many strident recommendations but this is only useful if David Cameron and his government take note and act. Delay, block, intimidate, conceal has been the continuing theme surrounding all aspects of vCJD/BSE.
I welcome this robust report from the committee members, lets hope that action now takes place to prevent further deaths of Human BSE via contaminated blood/ cells/ tissues/ medical instruments. With 1 in 2,000 of the UK population carrying vcjd according to latest Health Protection Agency research the UK faces a potential deadly epidemic on our doorstep. The disease can have incubation periods upwards of 50 years so generations of people remain at risk, until we have a blood screening test for vCJD.
Below is the link, my evidence and investigations has been quoted throughout. Here are some of the main points of the report:
Tuesday 8th July 2014
Cattle diagnosed with BSE in Germany, Romania and Greece and a USA resident dying of vcjd the human form of mad cow disease in a Houston Hospital May 15th 2014; highlights how this deadly disease continues to kill, main and destroy animals and humans.
Though the report below discusses one case of BSE in Romania, cattle like humans can be symptom free but still deadly infectious. How many other cattle in Romania infected with mad cow disease have already entered the human food chain and been consumed? One cow can make literally hundreds of meat products and of course bovine material can be used to produce hundreds of vaccines for humans.
Meanwhile the media continues to report on hundreds of patients who have been told they are at risk of developing cjd due to contaminated blood/surgical instruments.
This blog could run into pages and pages of the rising toll of mad cow disease in both animals and human population. Yet authorities in the UK and globally continue to push their heads in the sand hoping that this modern day man made plague will simply go away, when the list of victims and those disabled by vCJD continues to grow.
With this blog is a photo of me at Pitsham Farm West Sussex where the first officially diagnosed cow with BSE was reported in December 1984, but not publicly announced for many years.
The same UK departments who lied and hid the truth about the Ptisham Farm cattle dying of BSE are currently investigating the Romanian BSE case.
I remain concerned about how much transparency and honesty there is in the reporting of BSE in cattle and human vcjd, as the conflict of interest shown by various governments and their alliances with the meat industry often means human and animal health is a poor second to commerce and making profits for large corporations. A conspiracy that goes to the very top of the British Establishment continues to pressure scientists and medics into under reporting cases of BSE and vcjd in humans, and of course any victim’s of vcjd from consuming BSE infected material from Romania, Greece or Germany will not become ill for many years.
Below is the latest report about cattle in Romanian with BSE
Suspected mad cow disease found in Romanian bee
Posted on July 2, 2014 at 12:02 PM
Updated yesterday at 5:36 PM
BUCHAREST, Romania (AP) — A case of suspected mad cow disease has been found in Romanian beef, officials said Wednesday.
Romania’s animal health and safety authority said a preliminary test on May 1 indicated that a cow slaughtered at an authorized abattoir was infected with bovine spongiform encephalopathy, or BSE.
It said the carcass has been sent to a British laboratory for further tests and it could be an “atypical form of BSE which appears naturally and spontaneously in cattle.”
The officials only revealed the case after Russia decided to ban imports of Romanian beef, citing fears of BSE. It wasn’t clear how the Russians learned about it.
They said Romania has not had a case of BSE since 1995 when testing began and there was no risk to public health from the current “isolated case.”
BSE is fatal to cows and can cause a fatal brain disease in people who eat tainted beef. It first broke out in the late 1980s in Britain, where hundreds of people fell ill and many died after eating contaminated meat. Over the years, 4.5 million cattle were slaughtered to contain the spread.
Outbreaks followed in Japan in 2001 and Canada in May 2003.
Romania exports up to one million cattle a year, mainly to the Netherlands, Italy, and Croatia.
Tuesday June 10th 2014
Germany has identified a 10 year old cow with BSE. What is extremely worrying is that the cow showed no symptoms of the disease but as it was tested before slaughter was found to be infected with mad cow disease.
Cows this age are automatically tested for BSE but younger cattle are not, so just how many BSE infected cattle are still entering the human food and medicine chain globally? Cattle showing no symptoms but infected with lethal mad cow disease?
Before BSE there was no such thing as older cattle spontaneously developing BSE as it didn’t officially exist before the mad cow disease epidemic that infected at least a million UK cattle and which was exported globally, via our animals, food and medicines.
With this blog are photos of Kate
Richer aged 10 years old during a farming holiday in the UK. Also a later picture of Kate a talented music
university graduate who was killed by vcjd aged just 22 years old.
Tuesday 3rd June 2014
There has been a recent official confirmed case of vcjd the human form of mad cow disease, in Texas USA posted by the Center of Disease Control.(see link and snip below)
The human form of Mad Cow Disease will continue to kill, maim and destroy families until we have greater transparency regarding the origins and enablers of this UK man made manufactured disease which has been exported worldwide via food, medicines, and animals. This latest victim apparently spent time in Europe and the Middle East and the suggestion from the US government is this is where the latest US victim of vcjd contracted Human BSE.
My thoughts are with the victim’s family and friends, I am so sorry for their loss.
A few years ago a young woman called Linda from Texas aged 39 with six children died of what her doctor diagnosed as Human BSE. Linda slaughtered cattle for over ten years in a Texas factory called Tyson which produces beef products that are eaten across America. I believe Linda and the latest victim from Texas are connected and there is/may be a common regional environmental factor involved.
Linda lived and worked in the USA all her life, the American authorities overturned local experts diagnosis of Human BSE, claiming that Linda had died of sporadic CJD aged 39.
Linda’s family are not convinced and continue to fight for the truth regarding Linda’s untimely death which mirrored all the symptoms and signs of vCJD. I have communicated at length with Linda’s family, friends and medics in the area. There appears to have been a cover-up, Linda’s family and young children have been treated with a great deal of disdain by officials mirroring the intimidation that families affected by vCJD here in the UK receive when they dare to challenge under-reporting of cases of Human BSE.