Tuesday May 20th 2014
UK victims of CJD continue to grow including a woman aged just 27 years old and an Australian girl with English connections aged 18. There are just too many victims for me to mention in this short blog.
Rising cases of CJD in much younger people is alarming. Whitehall continues to keep victims and their families secret and isolated from each other. Families warned by DOH officials ‘your son/daughter is the only one to have this disease’, when in fact within a few streets other people are dying of the disease too.
With dodgy accounting the UK Department of Health are moving cases of CJD caused through BSE into various health columns or shifting them to other countries and continents.
This under reporting by the UK government gives the public no factual or correct indication of the true numbers past and present who have and are succumbing to the human form of mad cow disease.
This under-reporting of victims of Human BSE is happening all over the globe.
A site dedicated to USA victims of CJD in just one small location has managed to find over 900 members in a few months, many of these victims in their 30’s. Meanwhile cases of dementia in younger people continues to explode we face a global pandemic of dementia, in direct correlation with exposure to BSE infected material.
CJD is a ticking health time-bomb that the authorities here in the UK continue to push under the carpet, families threatened not to speak out or even tell their neighbours of CJD diagnosis, victims treated by the UK department of health like guinea pigs to boost funding for government backed scientist and medics. Currently the UK population continues to receive blood/blood products taken and re-cycled from thousands of UK blood donors who may silently carry or be incubating Human BSE.
With incubation periods upward 40 years plus, the UK government and ministers know that it will be many years before the true human toll will come to light.
In similar prose that was used in the 1980s and 1990s by John Gummer, Kenneth Clarke, Margaret Thatcher and all those named and shamed on this website throughout the BSE epidemic, Prime Minister David Cameron’s Conservative led government continue to tell us that the UK blood supply is safe. Despite over 100 blood donors being implicated in several people who have gone on to die of vcjd. Thousands of more blood donors are unaware of their ‘ at risk’ status, and so continue to give blood, which is also used to manufacture hundreds of thousands of doses of vaccines.
Experts who have given evidence at the current UK parliamentary inquiry into vCJD and safety of blood tissue and organs, have tried without success to discredit my website, evidence, book and findings, in a desperate effort to protect individual careers, salaries and also to shore up a government policy which has continued to hide the truth about BSE and its ongoing dangers.
Officials corrupted by funding opportunities, promotion, financial gain, over-blown scientific egos have chosen to look the other way, offer selective research, lie and cover-up the truth so that their livelihoods and status is guaranteed. Meanwhile more and more innocent people will continue to die of Human BSE, be pushed aside by Whitehall and dismissed by those in power.
I have no financial, career or funding gain from my truth telling all I have suffered is more heartbreak and distress, what pushes me ever forward is the memory of my 24 year old Andrew dying of the human form of mad cow disease pleading with me : ‘ find out who did this to me mum and expose them’ and ‘ this must never ever happen to anyone else.’
I carry my son always in my heart and will never stop until the truth emerges for public scrutiny and accountability. I want to protect your family from the pain I experience every day due to loosing my son so young to human BSE an avoidable disease.
Love will conquer all.
“When I despair, I remember that all through history the way of truth and love have always won. There have been tyrants and murderers, and for a time, they can seem invincible, but in the end, they always fall. Think of it–always.”
? Mahatma Gandhi
“Facts do not cease to exist because they are ignored.”
? Aldous Huxley, Complete Essays 2, 1926-29
Thursday 8th May 2014
BSE Case Confirmed in Brazil–According to an alert issued May 5 by the World Animal Health Organization (OIE), a 12-year-old cow was identified in Brazil with bovine spongiform encephalopathy (BSE), Feedstuffsreports.
The investigation began in April 2014, after a fallen cow arriving at slaughterhouse in the state of Mato Grosso suspected to be having neurological problems.
As stated in the report, meat and other products from this animal did not enter the food chain. The animal’s movement was traced and offspring from the female were located on 10 other properties in 3 different municipalities in the state of Mato Grosso.
Although the 49 offspring did not show clinical signs, the animals were destroyed and tested for BSE as part of a routine inspection process. The results of the test conducted by the National Agricultural Laboratory were negative.
With this blog is a photo of human BSE victim Kate Richer on holiday at a farm where she use to help the farmer’s wife milk the cows. University of Glasgow student Kate was killed by Vcjd aged just 22 years old. Her parent June and Derek from Hampshire remain forever heartbroken and determined to get justice for their young daughter’s unlawful death.
Monday April 28th 2014
This blog contains important pieces of factual information, about vCJD and the crisis facing the UK AND global community regarding our blood supply. Unless the UK government and its officials tackle this ticking health time-bomb generations face an uncertain future.
The first item is from the website Mumsnet UK and was posed to the Anthony Nolan Trust a charity in the UK who find bone marrow donors for sick children. It highlights the on-going deadly legacy of BSE. Also the severe lack of donors for organs/cells/ tissues/blood worldwide because the UK Government is holding back supporting research into vcjd and screening blood/donors for Human BSE. It’s not in many government officials best interests for the full facts of Mad Cow Disease to become public knowledge and this would be the case once a screening test for the Human form of BSE was implemented in our blood supply.
The second item is research January 2014 which found patient’s blood who had died of sporadic cjd was just as infectious as vCJD patients blood.
This research brings many questions, such as is Sporadic CJD really vCJD?
Does Human BSE present like dementia or sporadic cjd in the elderly?
Cases of Sporadic cjd and dementia in all countries which have been exposed to BSE have gone through the roof. This is not just due to ageing population or better diagnosis as the rise in cases are unprecedented we face a pandemic of dementia cases worldwide in the next decades.
I believe that many cases of so called Sporadic cjd and even dementia in older people is really Human BSE/ vCJD and that the authorities are very good at keeping the figures of Human BSE lower to protect the agriculture and pharmaceutical industries, who make huge profits for the government exchequer.
MUMSNET UK from Anthony Nolan Trust
Q. Stepout99: I’m a 30-year-old British citizen and I have been living as a temporary resident in Australia for the past two years, with another two years left on my visa and I plan eventually to a permanent resident of Australia.
I looked into giving blood here and they won’t accept my blood as I lived in the UK during the mad cow disease outbreak. So if Australia doesn’t want my blood or bone marrow, can I donate it to the UK?
- Anthony Nolan: People can only join the Anthony Nolan register if they reside in the UK; this is to ensure that if someone was to come up as a match, they are accessible and available to donate in London. At the moment Anthony Nolan cord blood donation is limited to the UK.
This latest research, below shows that cases diagnosed as sporadic cjd are just as infectious as those people with vcjd. Hundreds of people who have died of sporadic cjd have been blood donors during their lifetime, none of their recipients traced. This continues the infectious range of the disease re-cycling the infection again and again into the global blood supply.
When my Andrew had a clinical diagnosis of ‘the human form of mad cow disease vcjd’ I was told by Margaret Letich Nurse Co-ordinator of the UK CJD unit that:
‘ Andrew could have sporadic cjd’.
As Andrew’s mother I would not be silenced and kept questioning and demanding answers. Not every family faced with such pain, pressure from experts have the articulation or forthright nature to tackle ‘professors and medics’. Many families affected by cjd are still too scared to speak out or talk to the media.
3. Detection of Infectivity in Blood of Persons with Variant and Sporadic Creutzfeldt-Jakob Disease, Jean Yves Douet, et al.
Creutzfeldt-Jakob disease (CJD) is a rare but fatal brain disease of humans. Over the past 60 years, this disease has developed in several hundred patients who had received tissue (mainly growth hormone or nervous tissue grafts) from infected cadaver donors.
A variant form of CJD, primarily occurring in Europe, has been causally linked with bovine spongiform encephalopathy (commonly known as mad cow disease). Recent research, which used a relatively new type of highly sensitive laboratory mice, enabled researchers to measure infectivity in blood. They found infectivity in the red and white blood cells and plasma of a variant CJD patient and in the plasma of two of four sporadic CJD patients tested. These findings indicate the need to continue assessing the possible risk for CJD transmission via transfusion of blood products.
Joint Research Unit “Interactions Hosts-Pathogens” (INRA/ENVT)
Thursday 10th April 2014
Below is my extra evidence submitted to the Committee as I continue to challenge experts statements. This is my rebuttal to the previous inquiry session Wednesday 26th March 2014.
Families affected by vCJD and myself are shocked at the level of intrigue and half truths that continue to surround all aspects of Human BSE. Its very serious when officials tell a manipulated version of the truth and present this as fact to a Select Committee.
I remain steadfast, determined and the campaign for justice for victims of vCJD moves ever forward. With this blog are various photos taken at demonstrations, and victims referred to and just some of the many people involved/helping with my research.
EXTRA EVIDENCE SUMBISSION from Christine Lord : to Science and Technology Committee 6th April 2014
Safety of Blood Tissue and organs in relation to Vcjd Human BSE
Myself and families affected by vCJD have been very saddened, shocked and disturbed by some of the expert witness statements during the last few Inquiry sessions. We have had many dealings with government officials, civil servants and their organisations over the years and our experiences have highlighted very different facts and landscape. We have also met with Ministers and officials who were at the heart of the BSE scandal whose influence is still apparent in many essential areas of Whitehall/Westminster.
We urge the committee and its members to enable those affected by vCJD to have a clear and strong voice and in doing so protect the UK population from further unnecessary deaths due to blood contaminated with the rogue prions that cause Human BSE. The campaign www.justice4andy.com has asked current/on-going Health Ministers and Prime Minister David Cameron on several occasions for meetings to discuss our findings and campaign goals, these requests have been denied or our letters not even acknowledge, we feel very let down.
VCJD Human BSE its relatives and victims have been a ‘hot political’ issue for successive governments who have sidelined our research and dismissed the ongoing dangers that Human BSE poses for the UK blood supply.
There has been selective research and examination of vCJD and sCJD put forward to the Inquiry and committee members by some government officials and scientists. Replies to straight forward questions from concerned committee members have been met with equivocal responses with very few answers. We welcome the challenges that committee members have asked on behalf of victims of Human BSE and would like to build on this foundation to move towards greater openness within Westminster/ Whitehall about the human form of mad cow disease and its on-going threat to the UK public.
I would like to challenge just a few of witnesses discrepancies on behalf of my late son Andrew Black and the thousands affected by the human form of mad cow disease, who deserve and expect transparency from experts who have given evidence to the Inquiry. The UK public and global community should be to be aware of the facts and ongoing culture of secrecy within the Department of Health and Whitehall which still surrounds human BSE. All of this and more has a direct bearing on blood safety and blood screening for vCJD.
There have been many cleverly crafted responses from experts and officials who are salaried, funded or own their careers to the UK Government it agencies or organisations to put forward in just a few pages. Others who participate or sit on various groups regarding vCJD/CJD may not receive a regular salary but gain a great deal of status by adding that occupation to their CV and are often ‘cherry picked’ for their loyalty to government policy or particular factions.
I have concentrated on the session below to give the committee and its members an understanding how often conflicting evidence given by Government backed scientists, medics and officials creates a veil of confusion instead of the factual clarity and truth needed to address the ticking health time-bomb that is Vcjd/Human BSE
On Wednesday 26th March 2014 the Science and Technology Committee listened to oral evidence from witnesses, Prof Richard Knight, Prof Shelia Bird, Dr Paula Bolton Maggs and Dr Simon Mead.
Q146 Chair; I will start off by asking simply is the UK blood supply currently more or less safe than that of other developed countries for example the US or France?
During the seven years of my investigations into Human BSE, I have met interviewed hundreds of people, many affected by contaminated blood or surgical procedures. Scientists and medics who are at the cutting edge of research regarding vCJD/CJD within the UK and abroad, l travel extensively across the UK and globe investigating all aspects of the disease and its human toll. I have lived with, sat, ate, laughed, cried and held many victims of vCJD at all stages of the disease. Recording, their final moments and relatives experiences, on film and through photographs.
I have also received many emails, phone calls and had interviews with distressed citizens regarding the safety of the UK blood supply. Many have been from anxious former UK blood donors who have been banned from giving blood in their new country of residence.
Dr Bolton Maggs says the UK blood supply is safe, she quotes figures and statistics and yet
Canada, USA. Australia, France and every country in the world will not accept any blood donation from UK citizens, residents or individuals who have lived, travelled to the UK during the 1980s and up to 1996. We are all deemed at ‘risk’ of carrying vcjd as our blood could be infectious with the human form of mad cow disease as millions of us were exposed to BSE infection.
The USA Canada and Australia indeed any country in the world would not accept blood donations from any member of the inquiry or its witnesses This includes
Dr Bolton Maggs if she resided in the UK during the BSE epidemic. Yet Dr Bolton Maggs says it’s safe for UK residents to receive blood that foreign and developed countries will not accept for their own residents.
‘one in two thousand of the UK population may carry the rogue prion that causes Human BSE’, and this is being re-cycled within the UK blood supply
Below is just one of the emails I have received from a worried ex pat who has been a blood donor in Spain. Though Brian is banned from donating his blood in Spain he could still donate his blood here in the UK. It also highlights how recipients of suspected/contaminated blood are still not being traced or informed of their status within the European Union.
An individual blood screening test for vcjd would give confidence to the USA Australia and the global community that the UK blood supply is safe. It would also enable tens of thousands of individuals currently banned from giving blood to know their status and give those the opportunity who don’t carry the rogue prion to donate their blood safely
It would also give blood donors the reassurance that their blood donation is safe and fit for purpose.
Sent: 23 March 2014 16:21
Subject: my friend and colleague was a CJD victim
This morning I was casually given a link to your Justice for Andy website (by someone I barely know), and now having read of your work I would like to say a big ‘Thankyou’ to you for what you are doing in bringing this disgusting crime out into the open. I’m shocked at what I have just learned. I’m sure Andy would have been proud of you for what you are doing.
The link I’ve added below is to an obituary of an old friend and fellow bus driver/trade unionist from the 70’s and 80’s that also died of CJD. I only got that news last year, as I have been living abroad for the last 27 years and have little contact with the UK. I see that his name is not on your list of victims and, knowing him as I did, he will be screaming ‘…and why not!’ from wherever he is -with a grin on his face and an offer to help in any way he could. He too was a campaigner.
It’s a nice thought for me to carry that the inclusion of his name on your list could be just another grain of sand in the grand scheme of things -but one tiny bit of weight that helps to tip the balance towards more openness in society.
It may be of interest to you that I was a regular blood donor in Spain from 9th July 1990 until my last donation on the 17th June 2002. After that date my blood was refused as I had lived in the UK for more than 4 continuous weeks during a certain period the 1980’s. That was after my 20 donations were given. I cringe at the thought that I could have innocently damaged others…
I still have the donation card.
I really appreciate the information that you’ve shared with us all, and wish you good luck with the book, the campaign and I wish good health to you and yours.
Yours sincerely, Brian, Alicante, Spain
Q160 Stephen Metcalfe brought up Leucodepletion in relation to the UK blood supply. He asked if it was still used to filter the UK blood supply.
Former Health Minister Frank Dobson announced July 1998 that UK blood donations would be Leucodepleted , white blood cells removed to try and prevent blood donors passing on vCJD to their recipients.
Despite vast technological advances in the last 16 years Leucodepletion is still used in 2014 and it’s not good enough for 21st century prevention of vcjd. Professor Marc Turner at a SABTO meeting discussed how research found that Leucodepleted blood was at best only 37 percent effective at keeping blood free from vCJD. He voiced many concerns to a packed meeting regarding the safety of the Uk blood supply.
With incubation periods of Vcjd infection upwards of 50 years for Human BSE and the real possibility of mutated versions of the disease, we have to protect future generations from contaminated blood. We could well see our children’s children developing Human BSE due to contaminated blood/medicines sourced from UK blood donors who have not been screened fro Human BSE.
A middle-aged mother from the south of England
died of vCJD after receiving a blood transfusion in 2002. She received her blood transfusion for a back operation at least four years after Leucodepletion was introduced. Her family is convinced that Sue developed Human BSE because of infected blood. Her blood donor has been banned from further donations.
I have met and interviewed on many occasions the family of Mark Buckland who died in 2006 aged 32 from vCJD which he contracted via a blood transfusion. Mark had received his blood transfusion at a Manchester Hospital (Stephen Lunt from Manchester was a victim of vCJD and also a blood donor in the local area around the time Mark Buckland received his transfusion)
Mark Buckland received his blood transfusion contaminated with vcjd in the late 1990s.
His Mother and father Peter and Eve Buckland who live in the Brighton area had to fight the Department of Health and the authorities for years to get recognition that their only son had died of vCJD through infected blood. For a long time Mark was not even informed of his status, with the authorities keeping secret the fact his blood donor had died of Human BSE.
Even when Mark was eventually told his blood donor had died of vcjd, he was informed by members of the DOH that he was unlikely to develop the human form of mad cow disease. Mark developed many worrying symptoms similar to vCJD, but was told repeatedly by medics that
‘ your symptoms are nothing to do with vCJD.’ Mark spent his savings trying to battle what he was told was ME, when in fact he was dying of Human BSE. I have read many diaries written by Mark during his horrific decline and they show a catalogue of cover-ups by the DOH.
Marks family eventually received the full government ‘no fault/no blame’ gratuitous compensation.
Writing in the Lancet about Mark Buckland’s case Professor Collinge concluded that ‘contaminated blood was an “efficient” route by which vCJD can be spread.’
Dr Simon Mead stated Q149 that ‘ we have hard evidence that vCJD has been transmitted on blood transfusion.’
I understand from lawyers who handle all aspects of the vCJD Trust that there is a certificate/document that Prof Richard Knight and Directors of the CJD unit have to sign and agree diagnosis, before a victim of Vcjd receives government compensation.
This document/certificate is sent from the CJD unit to the VCJD Trust and its Solicitors so that funds can be released to the victim.
Richard Knight, Professor Ironside and other experts at the CJD Unit use their expertise and diagnostic skills to agree when and if an individual is a official victim of Human BSE and therefore able to receive the compensation.
Grant Goodwin (aged 30) developed vCJD in 2008 he was nursed by his family who live in Hamilton near Glasgow, by his parents Tommy and Margaret Goodwin. Grant was MV genotype and within weeks of him being seen by the CJD team Grant received the full government compensation. Richard Knight worked closely with the family and had one to one meetings with Tommy Goodwin where he told him ‘your son will never be officially recognised as a definite victim of vcjd.’ Copious amounts of blood were taken from Grant during his final months by the DOH, Prion Unit and CJD unit and Tommy and Margaret Goodwin where told
by various medics handling their son’s blood samples
‘ Grants blood is worth millions to research.’ The family agreed for their son’s blood to be used for research in the hope it would help others. They like all families who have consented to samples being used by UK scientists donated these blood and other samples in the spirit of trying to protect other families from the horrific disease vcjd. We have had and expect no remuneration, but want and expect victims and their loved ones to be treated with the upmost respect, this is often sadly lacking. We also expect research to be accessible and thorough and not kept behind closed doors or selectively released into the public domain.
The Goodwin’s like many other families were intimidated by government and health officials, including members of the CJD unit. They were warned repeatedly to keep quiet. Tommy Goodwin complained to the CJD unit about incidents which were denied.
These bullying officials and medics are experts in their field and well aware of the consequences of their behaviour and emotional/verbal abuse towards traumatised and grieving family members. This behaviour has never been about lack of training or empathy but a determined and concentrated effort by officials and their departments to isolate, frighten and silence victims of vcjd and their families. This does result in an under-reporting of cases of the human form of mad cow disease, it is also difficult for families to speak to one another and seek out others who have been affected by CJD.
I also complained on several occasions about the behaviour of government officials at least one of these distressing scenarios was documented by a letter written by Michele Gorham Nurse, Co ordinator at the Prion Unit which was then sent to the CJD uni
Q164 Professor Knight responded that ‘we have not discovered any good evidence that surgery has transmitted vcjd.’
I was contacted by the sister of a businessman from Suffolk who had died of CJD aged 53 in 2008.
He had a corneal graft seven years previous at Bury St Edmunds. The CJD unit had asked the man’s family many questions about his life style, food he had eaten and of course his surgery. The family were told not to talk about CJD ‘ as people get the wrong idea’ The family were leaned on to keep quiet about the diagnosis and the fact that this man had surgery and then developed cjd. His sister was very upset when she contacted me and said ‘my brother must have got the disease from somewhere’ she was very distressed that DOH officials had asked her not to ‘delve too deeply into her brother’s death’ and not to speak out.
I think the term ‘good evidence’ used by Professor Knight is significant as not having
‘evidence’ was used extensively during the BSE crisis by Ministers and officials concealing the truth about BSE and its deadly transmission to Humans. My book exposes that during the BSE epidemic selective ‘government backed research’ was used to manipulate the truth. I examine this in depth using secret and confidential ministerial documents throughout my book.
My ongoing and current research with independent professionals,
Those living and dying of vCJD has found that information about vCJD/CJD is often selectively used by Government agencies and officials.
Lack of ‘good evidence’ does not mean there is no ‘evidence.’
Q 166 Stephen Metcalfe asked Richard Knight about looking back through the medical history of individuals with prion disease.
All families affected by vCJD/CJD want to help research and protect UK population from the disease. Most relatives have given permission for our loved ones
medical and dentist records to be sent to the CJD unit. As bereaved families we do this in the hope of the development of treatments, cures and blood tests. I allowed a copy of my late son Andrew Blacks dentist records to be sent to Prof Knight and the CJD team for research purposes. However, I despair at the lack of professionalism, cohesion, consideration. I asked our family Dentist in Southsea, to also provide a copy of Andrew’s dentistry notes for my examination. On readying my copy I discovered that it was the records of another patient who had extensive root canal treatment and an individual who had received a great deal of invasive surgery one year after the death of Andrew. My son Andrew had perfect teeth and never received any invasive dentistry, growing up he never had an operation or even a broken bone. I had previously informed Nurse Co ordinator Margaret Leitch and members of the CJD team and Prion Unit about this fact. I phoned the CJD unit in Edinburgh to tell them they had received the wrong records and was told ‘Oh don’t worry we probably have not even looked at them yet. We ask for all records but often don’t even read them.’
When I asked about the CJD Units booking system of patients records and whether they had crossed referenced Andrew Blacks name and discovered the mistake I was told ‘ No we didn’t spot that at all.’ This was said with a laugh, I was taken aback that Andrew’s records were dismissed in such an off-handed manner.
Records which are used for research into Vcjd funded by and supported by the UK tax payer.
I contacted our family dentist and he apologized profusely for the mistake and agreed that he had sent another patients records to the CJD unit, instead of Andrew’s.
I will continue to support UK scientists in their battle for understanding of vCJD and have allowed my late son Andrew’s blood and other samples to be used for this purpose. However families want our late family members samples to be respected, researched thoroughly and also made available to foreign/independent scientists that relatives wish to support.
Professor Bird stated ‘ Of those only 18 have died, having been at least five years from exposure.’
As bereaved families we find the prefix ‘only’ 18’ offensive and hope the Inquiry and future witnesses and Government officials do not use this prefix again. It negates the seriousness of these horrific deaths and I am sure Professor Bird would not have used that ‘prefix’ when talking about a death in a car accident or the tragic deaths of those at Hillsborough! Hundreds have died of vcjd, thousands more are living victims and millions of us exposed to BSE. One death is one too many from a UK man made manufactured disease. Did Prof Bird even think what her prefix ‘only’ meant to the mother’s fathers, husbands wives, children, siblings of those killed through contaminated blood and also a bereaved mother like myself? Also the thousands of people watching the Inquiry online who have been given blood/blood products contaminated with Human BSE?
Her wording and term used was totally unprofessional, not appropriate and certainly does not reflect the huge numbers of people who remain at ‘risk’ of Human BSE.
The prefix ‘only’ and ‘just’ is used frequently by Government officials in relation to vcjd statistics and figures its unacceptable and a way of falsely reassuring the public.
One of www.justice4andy.com supporters
received a letter from former Agriculture Minister Douglas Hogg, the ex Barrister and QC: stated:
‘ happily its expected only a few hundred will die of vcjd.’ The wording of Hoggs letter to a member of the public reflects the ongoing theme and attitude within Whitehall regarding victims of Human BSE.
The Governments mantra to downplay the deadly disease and the millions exposed.
It’s also extremely offensive for bereaved relatives and the thousands of people living with the fact they could develop Human BSE in the future.
Q181. The theory that no one born after 1990 is likely to develop vcjd, is often used because of the UK SBO specified offal ban brought in 1989. Theories expressed by experts salaried by the government should not be presented as fact.
The SBO ban should have meant offal and infectious material from cattle were excluded from the human food chain but it was lax and not effective. ( my book Who killed my son? Examines and proves how little it did to keep BSE infection out of the human food/medicine chain)
People have contracted vCJD after the SBO in 1989 was introduced,
Irhad Rivzo died of vcjd aged 24 years old, he was a graduate and RAF cadet living in London with his mother Indiria.
They had fled war torn Bosina Nov/December 1992. Irhad was diagnosed with vCJD in 2010 and sadly died 26th July 2011. His mother received the full UK government compensation as Irhad had contracted Human BSE whilst living in the UK. He didn’t arrive here till three years after the SBO ban had been passed. Professor Knight, Will or Ironside would have agreed to irhads diagnosis as a victim of vCJD. Irhad’s mother Indira was told that her son had contracted the disease whilst living in the UK . Irhad’s arrival in the UK was at least two years after the 1990 deadline that Professor Bird stated.
I was also informed by Professor John Collinge that my son Andrew was probably infected in the 1990’s. BSE infectious material was at its height within the human food and medicine chain during 1991 and 1992.
Many victims of vCJD have been strict vegetarians, either through choice or due to religious cultural reason.
My son Andrew and our family did not eat any beef or beef products from 1988.
Fetal calf serum from infected BSE herds and material from human blood donors who went on to die of vcjd were also used in the manufacture of millions of childhood vaccines during the 1980s/1990s.
Q187 Professor Knight alluded about the replication of one name on the List of victims on my campaigns website www.justice4andy.com. This one name appears twice as various family members requested that her maiden and married name appeared, it was not meant to confuse but to support a grieving family. Others who are not identified have asked me to keep details confidential.
The names of victims on www.justice4andy.com website are provided by family, medics and those closely associated with those who have died, the lists are clearly separate with a list for victims of vcjd, those who have died of scjd, those from growth hormones cjd. I also have separate lists for various countries worldwide whose citizens have been killed by human BSE.
I am sure the committee members are aware of cases of BSE diagnosed in cattle last month in central Greece which highlights that BSE infection continues to affect both animals and humans.
I am glad that Professor Knight and those named and shamed have read the website and my book and I stand by every word, as do all the other families named in the book and within my evidence to the inquiry. I would be more than willing to come along again to the Inquiry and give further oral evidence in the presence of Professor Knight and those others I have challenged in my submissions, as will the other relatives described in my evidence.
Families affected by vCJD and myself have all been through the most distressing experience of our lives but it has not dimmed our intelligence, memory, awareness or understanding.
Q193: Simon mead gave evidence regarding relatives access to blood samples.
In my book (Who killed my son? Chapter 37 page 201, available Amazon) I examined and exposed the level of intimidation that myself and other relatives experienced, when they tried to ship small amounts of victims blood samples to a company who had developed a screening test for vcjd. We were trying to support a company who had already successfully tested tens of thousands of blood donors in France with their cutting edge screening test.
Victim of Vcjd Grant Goodwin had a great deal of blood taken during his last days and when Tommy his father tried to access a small sample to be sent to Amorfix in Canada like myself he was denied this request.
Tommy Goodwin was eventually told by Prof Collinge after weeks of wrangling there was hardly any of Grants blood suitable for the Amorfix test. Despite the World Health Organisation setting out clear guidelines how blood from vCJD victims should be stored so that they are suitable for screening tests.
Relatives were not only denied this simple and fair request but both Tommy Goodwin and myself were exposed to hour upon hour of pleading, cajoling then unpleasant phone calls from Professor Collnge not to send the blood samples over to Canada. Professor Collinge was developing his own test at the time.
Why couldn’t a small sample of Andrew’s and Grant’s blood go to a reputable foreign laboratory to help move forward prion research? My book exposes the power games behind all aspects of vcjd/BSE samples here in the UK and how personal/political l agendas come before public health.
Relatives are very worried about the monopoly and strangle-hold that the DOH, MRC, Prion Unit and CJD unit have on all aspects of vcjd research.
I am hopeful that the Inquiry and Committee members will see where the truth rests and support myself and campaigners in our fight for answers.
Families described in my evidence and submissions have been treated appallingly by the very experts and organizations that were supposed to support and advise them. Many families remain fearful and those that did complain often did so over the phone, and there was a complete denial of the events. Families nursing a child or loved one dying of vcjd/cjd have little time to write copious letters of complaint as their main concern is always the dying child or family member. Many other families are just blindsided by the science and medicine and take everything said to them at face value. When top experts and Professors descend on an ordinary household it’s an over-whelming experience for some families. Also families affected by vcjd are dependent on these same experts, nursing staff and officials’ decisions regarding the level of care, help and support they will receive for their dying child/loved one so this often prevents relatives from speaking out or complaining. As I have said before the control held by just a few groups, medics is hugely influential and this is a dangerous power which is and can be abused.
I was informed my son Andrew would never be provided with a wheelchair from the NHS or local health authority, so I had to rely on the support of the local Red Cross to provide a wheelchair, one was eventually and privately provided just a few weeks before my 24 year old son’s death.
Three months after Andrew died I received a phone call from my local hospital asking to speak to Andrew so that ‘ we can measure him for a wheelchair.’
A social worker told me ‘ your son Andrew has been treated very badly no one wants to take up responsibility for his care, he is being pushed between the local health authority, social services and other organisations. It’s a disgrace.’
Life can be made very difficult for victims of vcjd if their relatives ask too many questions, demand answers from officials and Ministers about BSE and its human toll.
I was also told my son would be provided with just 4 hours nursing care a day, when his needs were 24/7, I had to fight tooth and nail for every support my dying son needed, to keep him safe, comfortable and to be able to die at home. For the first few months of Andrew’s decline I had to employ private care at home with the bill running into tens of thousands of pounds, I argued until this was provided for by the NHS.
Other families are not so articulate or able.
Many other families have been scared that the compensation money would be retrieved or taken back, for those left in poverty due to vCJD it’s a frightening scenario.
However as Committee members are aware from my book and three documentaries
I keep ongoing written, photographic and filmed accounts of my experiences. I have also kept media colleagues and other trusted professionals up to speed regarding mine and others harrowing experiences at the hands of DOH, Government Ministers (past/present) and government officials. There are many in the establishment with a lot to loose when the truth about BSE its cause, origins and handling of victims finally becomes public knowledge. This all has a direct bearing on the UK blood supply and its safety regarding vCJD.
I was warned by former Agriculture Minister John Gummer and then serving MP during a one to one interview whilst filming with BBC1 ‘ to be careful what I said about him’ it was said in a threatening and sinister tone. My Andrew had been dead just 16 weeks. John Gummer infamous for declaring ‘ British beef is safe, is not a public health risk and can be eaten with complete confidence’.(May 1990) He was also one of those Ministers/ government officials that kept stating that there was ‘ no evidence’ that BSE would be a danger to humans. When as my book reveals there was a mountain of scientific evidence and proof, which was being concealed from the UK public.
The government compensation for the human form of mad cow disease victims is used not only as a lever to keep families quiet about vCJD diagnosis but also to keep them from challenging those in charge of the government during the BSE scandal. I will continue to pursue those I have already named and shamed on www.justice4andy.com.
One of my diary entries highlights the attitude towards victims and family members who dare defy the status quo. This was one of one of several conversations between me and Gillian Turner Co Ordinator of the CJD Network, who was cold and very superior in her tone and attitude towards my loss. Gill Turner and the CJD network is supposed to support families and put them in touch with one another and give advice. I have found all my dealings with her and the CJD network to be upsetting, unhelpful and an isolating experience
‘Gillian Turner: ‘Well parents agreed to the compensation on the understanding that they would not pursue individuals’.
When I replied that I had not agreed to anything and hadn’t taken any of the compensation money Gill Turner was non plussed and retorted ‘well a lot of parents have got angry like you but within two years had nervous breakdowns’.
My son Andrew had been dead just a few months.
Victims and families affected by Human BSE are hugely vulnerable and have had little voice or platform over the years to air their feelings and experiences. I urge the committee and its members to help us send out a clear message to Westminster about our plight and the many factual accounts and serious issues we have raised, in our battle for recognition and the need to protect millions of other UK families from the lethal vCJD.
I am hopeful that the Inquiry and committee members will support vCJD/CJD victims and their families in our other ongoing goals for blood screening and safer food and medicines. We don’t want other families suffering the heart-break of losing a child/loved one to vCJD through contaminated blood, tissues, organs.
I also request that the Inquiry and its members fully support victims of vcjd and their relatives in our fight for justice.
I am looking towards the day when vCJD victims, relatives and those affected by human BSE proceed to a court of law, where those Ministers and officials who lied about the dangers of BSE, those who kept secret and covered-up all aspects of the human form of mad cow disease, will be held to account by the criminal justice system.
6th April 2014
Wednesday 2nd April 2014
The UK government are shutting essential animal research labs whose role was to investigate and reveal deadly diseases in animals including BSE.
Watch the link to BBC1 news where bereaved dad Paul Peduzie talks about the loss of his son Edward to human BSE. With this post is a photo of Edward taken before he succumbed to vcjd. I met Edward and his Dad Paul and spent the day with them a few weeks before Edwards death aged 25 years.
Wednesday 26th March 2014
I am sad that so much of my extra evidence to the Westminster Inquiry into the safety of Blood, Tissues and Organs has been redacted (blacked out). See link below, as families who gave eye witness accounts, officials documents and facts were willing to give oral evidence and have all their details published. We are shocked that once again our evidence regarding government officials, medics, scientists and organisations who have continually lied and intimidated families and victims affected by Human BSE, are not named and shamed..
- Baby Billy at the London demo
I was informed by the Science and Technology Committee that the redacted information was to protect families when its seems to have just protected those officials and departments whose main aim is to under report the true numbers of people dying of the human form of mad cow disease and protect those responsible for BSE a totally avoidable disease in humans..
I am watching the inquiry with interest and am hopeful that my recommendations will be taken seriously as we face a ticking health time bomb that is perpetuated by the cultural of secrecy that has surrounded human BSE since the 1980s. This secrecy is about protecting Ministers, officials and organiisations responsible for BSE and has nothing to do with protecting the public’s health and safety.
I will not be silenced and neither will families of vicitms of vCJD.
Thursday 13th March 201
Today I was interviewed by TALK RADIO EUROPE Spain’s most popular English speaking radio station. I had a long interview with Presenter Bill Padley from 930am GMT about Andrew, the campaign and the current inquiry by the UK Science and Technology Committee at Westminster into the safety of Blood, Tissues and organs in relation to the human form of Mad Cow Disease.
Bill Padley asked many pertinent and searching questions as we discussed the ongoing secrecy that began with the BSE cover-up and continues to this day. We talked about the latest cases of BSE in central Greece and the many victims across Europe. I urged for all blood donors firstly in the UK should be automatically screened for vcjd and how the British Government continues to under report the true numbers of people who have died and have been affected by vcjd.
May ex pats and people with connections to the UK live in Spain and its always wonderful to receive emails from them as well as much needed information and knowledge about their experiences. Andrew, Emma and I spent many happy days on vacation in various areas of Spain it’s a wonderful country with great weather and very kind and warm citizens.
I will continue to speak the truth and will not be silenced, unlike many UK ministers and government officials and scientists who are more concerned about their careers, funding opportunities and egos than the UK and global populations health and well being.
(with this blog is photo of me and left Tommy Goodwin, who lost his son Grant aged 30 2009 to vcjd and Rose Smith lost her son Billy aged 21 2010 to vcjd).
Wednesday 12th March 2014
With my blog is a photo taken of me being filmed at Pitsham Farm, West Sussex, where the first UK cows were officially diagnosed with BSE December 1984. In March 2014 two cows in central Greece are dying of BSE, this deadly disease remains a ticking health time-bomb for the global community.
Two cases of mad cow disease in Central Greece; animals imported from the Netherlands.
Tuesday, March 11, 2014 6:06
A farm in Fthiotida, central Greece, has been placed in quarantine after two cases of mad cow disease were discovered there, almost 10 years since the disease last appeared in Greece.
The cases of bovine spongiform encephalopathy (BSE) were found in two dead cows that had been imported from the Netherlands. The animals are thought to be six years old.
No information was available about when the animals were imported from the Netherlands.
BSE can be transmitted to humans who eat food derived from the infected cows, particularly if it contains nervous tissue. In humans, the disease is known as new variant Creutzfeldt–Jakob disease.
Greek Agriculture Ministry said that the farm has been closed off and further tests are being carried out, while a ban on entry and exit of animals and their products from the affected farm has been imposed.
The package of measures issued by the Agriculture Ministry includes also:
1. briefing of the farmer and involved stakeholders for mandatory compliance of all necessary measures to combat the disease.
2. strengthening and intensification of officials inspections and controls of carcasses in slaughterhouses and compulsorily tests for possible presence of the disease before meat and meat-products are given for consumption.
3. Briefing the European Commission on the cases.
BSE can be transmitted to humans who eat food derived from the infected cows, particularly if it contains nervous tissue. In humans, the disease is known as new variant Creutzfeldt–Jakob disease.
sources: ekathimerini, skai.gr
Wednesday 5th March 2014
Here is the link to a website for vCJD victim GianLuca Squeglia from Caserta in Italy. GIanLuca died aged 32. His parents Maria and Franco with his brother Antonio continue to fight for justice and raise awareness regarding the ticking health time-bomb that is Human BSE, and its on-going consequences to the European and global community.
The website features Marias book called ‘Nero Su Bianco’, her book documents GianLuca’s death due to the dreadful man made prion disease. It also features the cover-ups and ground breaking research that Maria continues to examine regarding the human form of mad cow disease and how the authorities in Italy continue to conceal the true numbers of cases of vcjd within the Italian population. With this blog is a photo of GianLuca.
Friday 21st February 2014
The UK Parliamentary Inquiry continues into the safety of the UK Blood supply, tissues, cells and organs in relation to Human BSE. This recent article from The Sun newspaper highlights the dangers, which David Cameron’s government ignore at the UK populations peril.
The Sun Thursday 6/02/2014
CJD ‘RISK TO BLOOD’
Britain’s blood banks are a ‘ticking health timebomb’ because donations are not properly screened for mad cow disease, MP’s were warned yesterday. Variant Creutzfeldt-Jacob Disease .
Its human form has rocketed in Britain and Europe, campaigners have said – with 32,000 sufferers.
Christine Lord, 55 whose son Andrew 24, is among 177 Brits to die urged a probe and told an MP’s hearing: ‘Safety measures are insufficient.’
Thursday 6th February 2014
Here are the links to my witness statement to the Parliamentary Inquiry in Blood, Tissue and Organ safety in relation to vcjd risk. I have been asked to provide more evidence to the Inquiry. I was also interviewed by various media including the BBC.
Wave 105 interview
Saturday 1st February 2014
Biography for Christine Lord
Appearing before the Commons Science and Technology Committee, Wilson Room, Portcullis House, Westminster London. between 0915 and 1015 on Wednesday 5th Feb 2014.
In December 2007 Christine Lord lost her only son Andrew Black to vCJD, the human form of Mad Cow Disease. He was just 24 years old.
Since then, as a mother and as a journalist, Christine has investigated the origins of the BSE 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.
Her recent book “Who Killed My Son?” was ranked as a number one best seller by Amazon.
Christine remains concerned that research into vCJD and other deadly prion diseases continues to be tightly-controlled by the Department of Health.
A select number of senior UK scientists have a monopoly on all human BSE samples and consequently exercise significant influence on the direction of national and international research.
Christine’s work shows that this undesirable situation has contributed to the under-reporting of the number of people affected by the human form of Mad Cow Disease.
She has also recently commissioned independent research from a laboratory outside of the UK which calls into question the widely-stated belief of British scientists that only a certain section of the population have ever succumbed to vCJD.
SCIENCE AND TECHNOLOGY COMMITTEE
Select Committee Announcement
No. 59 (13-14): 30 January 2014
Evidence hearing – Blood, tissue and organ screening
Wednesday 5 February 2014
Wilson Room, Portcullis House
This is the first evidence session of the inquiry.
The first panel will comprise of representatives of blood and blood product users and others directly impacted by blood safety issues.
The second panel will comprise of representatives from a variety of Government and NHS advisory committees on blood safety.
Watch it online at http://www.parliamentlive.tv/Main/Live.aspx
At 9.15 am
· Mark Ward and Joseph Peaty, Secretary and Head of Publicity, TaintedBlood
· The Haemophilia Society (witness to be confirmed)
· Dr Matthew Buckland, Chair of Medical Advisory Panel, UK Primary Immunodeficiency Network, and Consultant Immunologist, Barts Health NHS Trust
· Christine Lord, Freelance journalist, campaigner and mother of vCJD victim Andrew Black
At 10.30 am
· Professor Marc Turner, Chair, Advisory Committee on the Safety of Blood, Tissues and Organs Prion Group and Chair, UK Blood Services Prion Working Group
· Dr Roland Salmon, Acting Chair, Advisory Committee on Dangerous Pathogens
· Dr Sheila MacLennan, Professional Director, UK Blood Services Joint Professional Advisory Committee
Further evidence sessions will be announced in due course.
Monday 20th January 2014
Extract from Page 24 of my book Who killed my son? Now available on Amazon.
‘My children have shown me the real meaning of the word love. I remind myself daily that I will always be the mother of two deeply loved children. I have been blessed with a son and daughter and also the ability to retain my faith in the decency of ordinary people. Since Andrew’s death there have been so many helping hands, smiles and kind words from so many strangers who I now consider friends.’
My quest continues……
Thursday 16th January 2014
HEADLINES SKY NEWS
CJD: Call For Widespread Test To Detect Disease
A mother whose son died from the human form of mad cow disease is appealing for help in developing a widely used test for it.
10:36am UK, Sunday 05 January 201
By Stephen Douglas, Sky News Reporter
MPS have launched an inquiry to check the safety of donor blood after hearing new evidence on the human form of mad cow disease.
The Commons Science and Technology Committee was responding to a study that revealed one in every 2,000 people in the UK could be carrying variant CJD.
Christine Lord’s son Andrew died from the disease which causes degenerative brain disorder.
She told Sky News: “Every single minute of the day there was relentless pain and memory loss. He was unable to move, unable to walk and unable to talk. Then he would get light bulb moments where he would ask what was happening.
“The public think it’s gone away but it hasn’t. Andrew could be any mum’s son and unfortunately there will be more Andrews.’
Variant CJD is thought to be caused by prion proteins in the brain.
These infectious agents can clump together and destroy cells which causes holes in brain tissue.
Infected blood transfusions could spread the infectious agent causing CJD
How many people in the UK carry these prions is unclear, but the latest study in the British Medical Journal estimates it could be as many as one in every 2,000.
At the moment donor blood isn’t tested for the disease.
Dr Simon Mead, from University College London, told Sky News: “What we fell would be right is to move towards a way to screen people who are silent carriers from blood donation and to identify them prior to organ donation for example. That way the infection wouldn’t be spread further.”
The Department of Health says it is supporting studies into how widespread vCJD is. It points out there has only been one case in the last three years.
Andrew pictured with his mother, Christine, before he was infected
But Mrs Lord believes more testing is needed.
“When Andrew was ill with vCJD and started to get very ill he said mum find out why I’ve become so ill and make sure no one else ever gets this,” she said.
“He died in my arms and I buried him three days before Christmas in the cathedral where I used to watch his nativity plays. No mother should have to go through that.”
According to data released by the Health Protection Agency, 177 people in the UK have died from vCJD after eating contaminated beef.
Cases have tailed off in recent years with none reported last year and only one so far in 2013.
But previous studies have found that many others are harbouring the infection without developing clinical symptoms