2005 made a knight now Sir John Major
Cashing in on after dinner speaking, earns £25,000 per event ( 2016- )
I have had lengthy discussions with Beryl Rimmer grandmother and guardian of Victoria Rimmer who was reported as the very first victim of vCJD. Vicky became ill during John Majors tenure. I
I have spoken on many occasions with Beryl and Vicky’s family sharing the horrific experience of loosing a beloved child to vcjd.
Beryl is concise, clear and never wavers from the facts and memories surrounding Vicky’s last days.
Victoria Ruth Rimmer was just 15 when she started to develop symptoms in May 1993, she was withdrawn loosing weight, moody and within months was starting to fall over and forget. By August 1993 she was very ill, Beryl (now 68) told me “I was a woman alone, my husband had just died of a heart attack, aged 53, I buried him just a few days before Vicky was admitted to hospital. I was very vulnerable and when I was told that three top scientists were flying down from Scotland, to meet me and examine Vicky it was overwhelming.” she continued “They asked me lots of questions about Vicky, her lifestyle, what she ate. They warned me not to speak out or to go to the press, to think of the consequences to the common market. “I said for gods sake this is a child’s life at stake.”
Beryl refused to be silenced and tells me she became the target for hostile, dismissive and unhelpful behaviour from many who were involved in Vicky’s care. This was during the worst time of her life as she struggled to nurse her once sporty fit teenage granddaughter as she succumbed to what appeared to be a terrifying new type of CJD.
According to Beryl during the most awful time of her life many medical professionals and officials “closed ranks, putting their careers, money and the meat trade before my Vicky’s life.”
Even Vicky’s GP became silenced and found it too difficult to attend his patient. This attitude from people who were supposed to support Beryl and the dying Vicky became more apparent when Beryl started talking to the press as no one else was listening. Beryl became well known appearing on television programmes in the UK and in America, she became acknowledged as the “mother of the first victim of vCJD”. The feisty grandmother who had adopted Vicky as a baby and is now recovering from cancer told me “I made sure I talked to everybody about Vicky’s plight especially after they warned me not to, the world needed to know what was happening to my darling Vicky.”
During our talks Beryl painted a vivid picture of a teenage girl full of life who had written on her calendar just weeks before she became ill “I luv life”. A fifteen year old that was now dying painfully minute by minute by what appeared to be vCJD. Beryl lost her home, her savings everything to take care of her child and ended up living in one room of a friends house. The terrible disease that took Vicky’s future has robbed Beryl of her health, and a retirement of peace, comfort and ease.
Families demonstrating outside Department of Health
For many Vicky Rimmer has been accepted throughout the world as the first victim of vCJD. Yet two years ago a shattered Beryl finally received a letter from the CJD Surveillance unit telling her that their tests had concluded Vicky had not died of variant CJD. Apparently Vicky had a different genetic background she was MV (so far all vCJD victims have been MM codon 129 , this genotype makes up about 37 per cent of the UK population).
So what did Vicky die of? The most similar illness to vCJD is Classic or Sporadic CJD its very rare; 1 in a million of the UK population, usually only ever affects people in the 45-75 age group, average age of onset 60-65 years, with patients dying within weeks or 4-5months. Vicky lived for nearly 5 years, and it is virtually unheard of for people to get this form of CJD under 40 years of age or live that long. Sporadic CJD (a naturally occurring disease) and vCJD have different symptoms in the early stages, Sporadic usually presents as a physical and neurological decline. Whereas vCJD shows marked psychological symptoms such as anxiety, panic, mood and behavioural changes in fact many vCJD victims at the earliest stages of the disease are diagnosed with depression. As I talked to Beryl she described the onset of Vicky’s symptoms and they matched my sons Andrews behavioural and personality change, which he experienced due to vCJD some 14 years later.
Vicky had a battery of tests when she was alive including a brain biopsy in the mid 1990s. After Vickys death in November 1997 her brain tissues were taken to the CJD team at Edinburgh for extensive examination. Yet it wasn’t until Vicky’s inquest in 2001 that Professor James Ironside of the CJD Surveillance Unit stated “The characteristics of the disease suffered by Miss Rimmer does not fall neatly into any category.” finding that Vicky’s case was ”unique” with tests showing signs of both Sporadic and vCJD.
The coroner at Vickys inquest in 2001 John Hughes added “The evidence is unclear?’ but suggested Vicky died of ‘sporadic cjd.’
“Before BSE there was no recorded case of CJD in a teenager”. (The Daily Express February 1996).
So what do I think?
Scientific research entitled “Sporadic Creutzfeldt Jakob disease in two adolescents” complied by amongst others Professor Will and J W Ironside, from the CJD Edinburgh Surveillance Unit was published in Neurosurgery Psychiatry 2008.
The teenagers concerned are UK Victim No1 who started showing symptoms in 1979 aged 15. The paper dismisses any chance of her death being connected with BSE because of the date she started to become ill, concluding that her death was due to Sporadic cjd. Yet Stephen Dealler expert Microbiologist told me June 2008 “BSE must have been in the died since at least 1980, if not a lower level in 1976.” Though it is doubtful that UK victim No1 was infected with BSE material I have spoken to many scientists who agree that BSE was probably in the food /medicinal chain at a low level from the mid 1970s.
The anonymous UK victim No 2 recorded in the paper, I can confirm after verifying this with Beryl and others is Vicky Rimmer with the scientists using tissues samples from her brain. The research states “Sporadic CJD is rare in individuals less than 45 years old and age of onset/death less than 20 years exceptional.”
And “The clinical and pathological features in UK case No.2 (Vicky) cannot exclude the possibility of BSE infection in this individual.”
Cattle ready for slaughter
The scientific data is presented well with the conclusion that UK Victim Number 2 (Vicky) died of Sporadic CJD. Though for me the data posed more questions than answers, evidence is explored backed up with what would appear thorough research but I felt the paper and evidence was left very open to interpretation. Not least a very important part of the paper is incorrect there is mention of UK Victim No 2 (Vicky) having a febrile fit aged 5 due to a rubella vaccination. I have clarified this on many occasions with Vicky’s grandmother and other sources. Vicky did have a convulsion at 5 years old the cause never established. The most strange part of this is that Vicky never had any immunisations throughout her childhood as the family didn’t believe in them, except for rubella the year Vicky started to become ill.
As a journalist I find myself troubled by Vicky’s case, how it was handled and the appalling treatment of a bereaved grandmother. It has also left me with many unanswered questions:
If Vicky didn’t die of vCJD but Sporadic CJD why the continuous intimidation and need for secrecy?
What have the government, department of health and the Edinburgh Surveillance Team got to hide, that they sought to silence an elderly grandmother?
Also why put the critically ill Vicky through continuous specific, intrusive and painful medical examinations and why the questions about Vicky’s eating habits?
Why the dismissive and hostile attitude from the medical profession and government officials when Beryl spoke to the press?
Beryl even gave evidence at the Phillips Inquiry and was an active member of the BSE foundation in its earliest days. Beryl and many of the people who cared for Vicky during her last days are convinced she died of vCJD.
Because Vicky is no longer seen as a vCJD victim Beryl now feels isolated and very let down. She told me “I know my Vicky died though eating/ingesting BSE infected meat her symptoms were so like all the other vCJD victims. I think its because I spoke out, went to the press and stood up to the government.”
The Governments change of diagnosis could be influenced not just by the results of their tests but due to the fact that Vicky was a different genetic type from all the other victims. The government stance at the moment is that no one outside of the MM codon 129 genetic group has developed vCJD.
Though speaking to Professor Collinge May 2008 he told me “We have found during post-mortem testing that people who have died of unrelated illness have been carrying vCJD, and these have come from the other groups VV and the most common MV.”
An anonymous retrieval of 12,000 tonsils and appendix in the UK found one MV carrying vCJD and two VV testing positive for vCJD.