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Messages in thread: Medical issues - vCJD

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Thread: vCJD
Posted by: J5
At: 15:45, 18/8/2012

Access to Medical Care

 If anyone has had problems accessing medical care, such as endoscopy, colonoscopy, dentistry, etc, due to their at-risk status with vCJD, please could you contact Christine Lord whose contact details are given below, with her permission.  Thank you.

Sue

mschristinelord@aol.com

2, Wilton Terrace

Southsea,

Portsmouth,

Hants

P05 2BQ

Thread: vCJD
Posted by: J5
At: 19:01, 3/4/2012

From Christine Lord's blog:

 
Christines Blog (Current Blogs)



Monday 2nd April 2012Emma and Andrew

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 cant 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.
Contact information:
Dr. Larisa Cervenakova; Phone: 301-738-0765; e-mail: cervenakl@usa.redcross.org
Thread: vCJD
Posted by: J5
At: 20:25, 15/3/2012

From Christine Lord's blog:

Tuesday 13th March 2012

SABTO Safety of blood tissue and organs is an apparently independent group of experts who meet regularly to advise and make recommendations to the government re public health safety and well being.

They have a few public meeting each year in central London which I always attend, usually I am the only ordinary member of the public there as the meetings are never properly or fully advertised. By law ‘public meetings’ have to be advertised sufficiently so that the population who will be most affected by the recommendations have the ability to challenge and/or attend. I was told that SABTO’s funds could not stretch to publishing these meetings but they seem to meet overnight accommodation, fine wine and dining, expenses and first class travel for many of the so called experts who take part in these events. .

It was brought to my attention by several high ranking government officials at the heart of Westminster who supportwww.justice4andy.comthat SABTO were due to have a ‘closed’ meeting on Friday 9th March to discuss amongst other things blood filtration and vCJD. Despite scouring SABTO’s website and contacting their secretary all details, programme, and agenda regarding this meeting has been kept in total secrecy. Event the venue, location where UK and international experts in blood safety and vCJD would meet was kept under-wraps.

With this blog is a photo taken of me, Andrew and Emma when my son was alive and well. We accuse all those that lie and continue to hide and bend the truth, my family though decimated by vCJD continues to be strong and determined to seek justice.

I have put in a written request to SABTO for the minutes of this ‘secret meeting’ and also have asked to know who attended and any speakers that gave presentations. It’s very concerning that a so called ‘non partisan’ group set up to oversee the rights; health and safety of the general public are conducting themselves in such a covert manner.

On the occasions I have attended SABTO’s public meetings I have been met with dislike, disdain and often my questions remain unanswered or brushed aside by the groups of experts present. I have never received the respect due to me as a bereaved mum or even as an ordinary citizen of the UK. I am a thorn in their side a true voice as all those connected or who sit on SABTO’s board relie on funding, salaries, expenses or their livelihoods to the Department of Health, NHS or government agencies.

I fear the minutes when they are made public will be a ‘filleted version’ of events and the culture of secrecy that killed my son will continue to weave its web of intrigue and cover-ups. For all of those who continue to prevent openness, transparency and the truth getting into the public arena this is a warning that in the near future you will be ‘hung by your own petard.’

Thread: vCJD
Posted by: J5
At: 11:47, 28/2/2012

For information:  I have been informed that the Independent Scientific Advisory Committee on the Safety of Blood, Tissues & Organs will be considering prion filtration technologies, among other issues, at its next meeting on 9th March.

Sue

Thread: vCJD
Posted by: J5
At: 12:05, 5/2/2012

 Government Plans for Secret vCJD Tests

 

 We were appalled to learn this morning that the Government is considering testing 30,000 NHS blood donors for vCJD, the human form of mad cow disease.  The Mail Online reports today that:

Thousands of NHS patients could be secretly monitored by the Government for symptoms of the human form of mad cow disease amid concerns that there could be another wave of infections.

Experts advising the Department of Health believe patients who have received more than 80 blood transfusions are most at risk of developing the fatal brain disease because it can be passed on through infected blood.

They say monitoring these patients could give vital clues about the way the disease develops and is transmitted from person to person and could help work out whether there are likely to be further deaths.

It could also inform officials whether the risk from blood donations needs to be treated more seriously.

But they are considering conducting their surveillance secretly because they fear that informing patients they are at risk and are being monitored will cause unnecessary alarm.

The proposals have been discussed by a powerful panel of leading scientists and doctors, which advises the Government on the disease, known as variant CJD.

Chris James, Chief Executive of the Haemophilia Society is quoted as saying:

'We are shocked to learn there was ever any suggestion of non-consensual monitoring.

'Given the history of contaminated blood in the 1970s and 1980s, the maintenance of medical ethics is especially important to the haemophilia community.

'Any proposed framework must be reviewed by an ethics committee and open to challenge from individuals and organisations such as ourselves through a formal consultation process.'

Read more:

http://www.dailymail.co.uk/news/article-2096643/Mad-Cow-Diesease-Plans-secretly-test-30-000-NHS-patients-CJD-fears-escalate.html#ixzz1lVWQgJ8R

 


Thread: vCJD
Posted by: J5
At: 17:34, 19/1/2012

Thursday 19th January 2012

I like to thank the many millions of supporters of

www.justice4andy.com campaign and families affected by vCJD. Without your tireless campaigning and the medias help funding for Professor Collinge’s vCJD blood screening test would have been catastrophically delayed and the test may have well been shelved.
The released cash now means lives have and will be saved as each delay of vital individual screening tests for vCJD means more people are being exposed via blood, medicines, organs and hospital procedures.
I have been down this path before when brilliant scientists have developed a blood screening test only to be scuppered by Whitehall. .
Every time the UK government quash and sideline valid tests they are doing so not in the interest of public health but in the interest of those responsible for BSE.
Funding for Professor Collinge’s test was only achieved due to constant pressure from various organisations, groups and individuals in the shape of meetings, demonstrations and investigations. Without this pressure and support Professor Collinge’s test would have been withheld through lack of money. Collinge was told by Anne Milton that no funding would be available despite her knowing the recent findings from the Health Protection Agency who predict at least 14,000 people in the UK silently carry vCJD, many of whom would be blood donors and have hospital procedures. .
The Conservative led UK Government were and are trying to stop research and funding so that individual blood screening tests are not implemented in the lifetime of those responsible for BSE.
Every way possible is being used to block, seriously delay and hamper individual screening tests for blood donors. Filteration is being mooted and even kits area being manufactured as I write this, who are the shareholders in these companies?
The UK DOH are trying to raise the bar so high that no blood test would ever pass its protocols or guidelines. The influence of Kenneth Clarke, Richard Packer, Gummer and their cronies stretches right into every niche and corners of David Cameron and his immediate family.
I fear that as soon as the individual screening test is able to be rolled out into the UK blood supply that further delays and blocks will rear their heads from the UK Department of Health at the behest of Westminster and Downing Street. I am monitoring their actions and decisions from within and without.
The current funding being provided to develop Prof Collinge’s test I believe may be a ‘token’ to appease and quieten campaigners, media and scientists. This is now a statement from myself on behalf ofwww.justice4andy.com and on behalf of the British population whose families and children’s lives are paramount. Its not a case of ‘if’ but ‘when’ an individual blood screening test will be implemented into the public domain and that will come much ‘sooner’ than the Government want or expect. Foreign scientists as well as those in the UK have the technology for vCJD blood screening.
The days of Gummer, Clarke and their cronies freedom and influence over the lies and cover-ups of BSE and its lethal human pathogen vCJD are numbered.
Blood screening individuals will show prevalence, those exposed to BSE, silent carriers and also the exact source and route of the infection. There will be no hiding place then for those responsible who unlawfully killed my only son Andrew. Also finally I can sleep well at night knowing that our blood supply is individually screened for vCJD and no other innocent person will die of vCJD through blood, operations or medicines.

 

Thread: vCJD
Posted by: J5
At: 12:27, 16/12/2011

From Christine Lord's blog:

Friday 16th December 2011Andy at Talksport

Today at 9.25pm 16th December 2007 my only son Andrew was unlawfully killed by vCJD.
‘Time heals’ ‘moving forward’ is never an option for me and families affected by vCJD as those responsible for our loved ones untimely deaths remain unpunished and free.
There is no ‘resolution’ or ‘peace’ because too many lies and half truths continue to surround BSE and its lethal pathogen vCJD. How can I ever be free of pain when my only son lies buried deep within the cold earth? My Andrew should be living his life, laughing and breathing in the sparkling frost of a December day. His death was unlawful and yet no one has ever faced a court of law or jury?
This song/poem paraphrased from Roberta Flacks 1972 version describes the ongoing forever love I have for my Andrew. It reminds me of that wonderful day 2nd September 1983 when I held my healthy 71b 10oz baby boy in my arms for the very first time. The joy and love my Andrew gave to me does indeed fill the universe his loss reaches every part of my soul and to infinity.
There is no sell by date on a mother’s love and my determination to protect and help my son get justice continues to burn brightly and with ferocity as strong as the day my beloved boy died. 


THE FIRST TIME EVER I SAW YOUR FACE
The first time ever I saw your face,
I saw the sun rise in your eyes
and the moon and the stars were the gifts you gave to me, my love. 

The first time I ever held you close,
I felt your trembling heart, beating right next to mine, my love.
That was when I knew your joy would fill the earth for all time, my love.
And the last time ever I saw your face,
I knew your heart will stay so close, so close to mine, until the rest of time.



 

 

Thread: vCJD
Posted by: izzy
At: 23:05, 6/12/2011

E mailed Frank today. Let's see what he has to say, if anything.

Thread: vCJD
Posted by: izzy
At: 19:38, 5/12/2011

When Christine sent that picture to me the exact same thought came into my head. "Isn't this the same Frank Dobson that didn't want anything to do with his constituent on this site and now is centre stage for vCJD." I did email Christine and point out the irony and duplicity of it. These MPs must have rhino hides for skin and more brass neck than a tuba. It seems so odd that he's backing a different blood borne didease. What's in it for him. ?? Certainly not altruism. Who'd like to email him and ask why he's backing this and not the contaminated blood with HIV and HCV. I will for one.

Thread: vCJD
Posted by: GEEZA
At: 19:05, 5/12/2011

NOW your getting the idea !   they are MP's,    and THIS is what they do !        

Thread: vCJD
Posted by: queenie
At: 15:10, 5/12/2011

o yes on many many occations ,yer he replys but with the same old shit time and time again just don't want to help, and thats why i think theres more to this than just his support to the familys affected by this, i have also emailed him asking him what his real intrests are, if anyone else  feels like asking him please do the more the better, as this just does't sit right with me ,and if this is true its dam right sick.

Thread: vCJD
Posted by: J5
At: 11:38, 5/12/2011

I agree;  it's odd.  Has he ever written to you?

Sue

Thread: vCJD
Posted by: queenie
At: 9:43, 5/12/2011

Maybe i am wrong in pointing this out at a time and an occation like this ,first of my heart and thourghts are with Holly and her family, what i find odd about the thread below is the picture of my MP Frank Dobson who is showing his support to the familys affected with VCJD and to urge the Government to start the testing program, i might be wrong but as a Haemophiliac with HCV and on the so  called High Risk CVJD list i have urged and pested Frank Dobson to support or back our campaine for the truth and justice and he could not give a dam about us and does not what to help,the thing im thinking is the company who has invented the new tests for VCJD is in his constitute and this is nothing but a lobbying process, am i wrong ?.   Alfies DaD

Thread: vCJD
Posted by: J5
At: 12:53, 26/11/2011

From Christine Lord's blog:

Saturday 26th November 2011vcjd Memorial Day

Please check out this article about vCJD and the campaign demanding that blood donors should be individually screened for vCJD before they give blood.

Donating blood is the gift of life and many victims of vCJD and families affected by the human form of BSE have been blood donors. We understand that no blood donor wants to pass on a deadly disease with their donated blood.
We can prevent a secondary wave of vCJD through blood, organs, tissues and contaminated medical instruments. Its vital that the UK government and the DOH fully commit to pushing forward the many blood tests that have been developed within the UK and abroad.
With this blog is a photo of MP Frank Dobson former Labour Health Minister who supports families affected by vCJD. Our aim and goal is for all UK donated blood supply to be screened and free of the rogue prions that cause the human form of BSE.
Once this is rolled out in the UK it will mean that blood banks across the world can also test and screen their blood, preventing future and further deaths of vCJD not just here in the UK but throughout our global communities.
The test is simple, safe and relatively cheap at present the UK spends over £200 million a year buying in blood and during the last bush fires in Australia the country had to buy in blood due to many of its residents having connections with the UK. There is a global shortage of blood and one of these reasons is due to the many people excluded from donating blood due to their connections with the UK. Many more people would be able to give blood safely once this test is implemented.
This blood screening test will save lives and money.

Thread: vCJD
Posted by: J5
At: 11:21, 22/11/2011

From Christine Lord's blog.  I would like to add our condolences to Holly's family and friends at this dreadful time.

Yesterday Monday 21st November Holly Mills aged 24 the longest surviving victim of vCJD died at her home in North Yorkshire.

Holly was cared for 24/7 by her devoted parents Linda and Peter, their daughter was diagnosed aged 18 years old in 2003. The beautiful bright student who was training to become a mid wife was disabled and wheelchair bound within months of symptoms appearing.

Peter and Linda Mills are convinced their daughter remained alive due to the intervention of a controversial drug called pentosan which does appear to slow down the progression of the disease. Early diagnosis of vCJD is essential so that medications like pentosan can be administered as soon as possible. Blood screening is essential so that treatments and cures can be developed for CJD.

My thoughts are with Holly’s parents at this terrible time and they can be assured that Holly will never be forgotten and the campaign will continue to fight for justice for all victims of vCJD.

 

 

Thread: vCJD
Posted by: J5
At: 17:40, 18/11/2011

From Christine Lord's blog:

Friday 18th November 2011Child with banner

Hundreds of children across the UK have lost a mum or dad to vCJD, many of these were under the ages of nine years old. There are also many other children who have watched as their older brother or sister has died of vCJD. These hundreds of youngsters are ‘living victims of vCJD’ profoundly affected by the UK man made manufactured disease.

VCJD not only disables and kills its victims it also takes, destroys and wrecks the immediate family’s lives and sometimes their futures as well. Many families have been brought to their knees, emotionally, physically and financially caring for a family member suffering from vCJD. There is never any peace or resolution as there are just too many lies and half truths circulating about BSE and vCJD. We as families are not told the truth and the public continues to be kept in the dark.
Here is a photo of Charlie and Chloe, they lost their father Dean aged 25 to vCJD just over a year ago. Charlie was just 18 months old and Chloe aged four had just started school when their dad died. Their mum has told them that Dean is now a star in the sky watching over them, Chloe and Charlie say goodnight to the stars every evening. .
Charley and CholeThese are the victims that never go on any statistics who the Conservative led government and Kenneth Clarke want to pretend don’t exist.
 
Chloe and Charlie like all the children bereaved by vCJD have human rights to have a family life and a parent that is alive and not dead through vCJD.
With 5,000 letters being sent to people across the UK who are now ‘at risk’ of developing vCJD due to contaminated blood/instruments, the numbers of children who are affected continues to grow.
The campaign continues and families affected by vCJD remain steadfast and on course for justice and accountability. With this blog is also photos of children who attended the memorial service for victims on 12th November 2011. 

Thread: vCJD
Posted by: J5
At: 21:35, 1/11/2011

Well worth a read.

Sue


Daily Mail:

Could we face the return of CJD? Experts fear it may lie dormant in thousands

Holly Mills was a lively teenager about to start university. But with her whole life ahead of her, she suddenly found herself in the grip of tragedy.

Within the space of just a few months, the gregarious 18-year-old had become so severely brain damaged that she was unable to move or communicate. 

Eight years on, Holly has to be fed through a tube into her stomach and shows no emotion or awareness of her tragic predicament. Her days are spent in heartbreaking, silent immobility.


New evidence collected by the Health Protection Agency (HPA) suggests that one in 4,000 people who were eating meat before 1996 is probably carrying CJD (after that date, cattle infected with mad cow disease were, theoretically, removed from the food chain). 

That could mean that as many as 15,000 people nationwide could be affected. While this is in line with a previous survey, the latest findings suggest CJD might be more prevalent in older people.


However, John Collinge, a professor of neurology and a leading expert at the Government’s CJD research unit at University College, London, has developed a blood test which can check if the disease is present by detecting evidence of the so-called prions or infectious proteins known to cause the disease. 

He believes the number of people infected could be as high as one in 1,000 and says the CJD situation is ‘very worrying indeed’.  

So far, there’s little official interest in investing the several million pounds needed to turn the blood test into the high-speed screening tool needed to bring it into routine use. Critics say this is because the Government fears what it might find. 

http://www.dailymail.co.uk/health/article-2055904/Could-face-return-CJD-Experts-fear-lie-dormant-thousands.html 

Thread: vCJD
Posted by: J5
At: 11:10, 1/11/2011

From Christine Lord:

Thursday 27th October 2011

Experts in prion disease all agree that the ‘ Easiest way to transmit the rogue prions that cause vCJD is intravenously via blood.’

At its recent meeting SABTO (Safety of Blood Tissue and Organs) a committee who make recommendations for policy to the UK Government, discussed patient consent regarding blood transfusions. This is some of the discrepancies they found:
 
Patient consent for blood transfusion
BACKGROUND
It is a general legal and ethical principle that valid consent should be obtained from a patient before they are treated. The General Medical Council (GMC) has published guidance on consent (Ref 1). The 2000 NHS Plan pledged that informed consent must be sought from all NHS patients and research subjects (Ref 2). To help achieve this the Department of Health set up the Good Practice in Consent initiative and published a national guidance framework for consent (Ref 3). However, as blood transfusion is often an additional procedure during a course of treatment, there was no specific guidance given for blood transfusion.
 
Audits presented to SaBTO have identified that the practice of obtaining any form of valid consent for blood transfusion is highly variable in the UK. This was also confirmed by the European Blood Alliance in a survey of its members in 2008 on “Consent to transfuse” (unpublished).
 
The following issues have been identified by SaBTO:
 
· Patients are not always given information on the risks, benefits, and alternatives to transfusion, or the right to refuse transfusion.
· Patients are not always made aware that they have received a transfusion.
· Patients who are unaware that they have received a transfusion may go on to donate blood when they should not.
· There is inconsistent practice across the UK.
These inconsistent practices throughout the UK cause anxiety, concern to not only patients but also to nursing staff and health professionals. It also highlights just how many people may have received a blood transfusion without their knowledge. These patients could then become blood donors and risk re-cycling blood contaminated with the rogue prions that cause vCJD.
Many nursing staff who I have interviewed have been unaware of the dangers of vCJD and blood and the risk of contamination via hospital equipment and procedures. Even more health professionals I have talked to were unaware that all UK blood bags and blood products contained the disclaimer:
 
‘RISK OF ADVERSE REACTION INFECTION INCLUDING VCJD’.
Patients should be made fully aware of the risk of vCJD via blood but also ‘any consent’ signed by individuals about to receive blood should not be discriminatory or legally binding. Any consent form or paperwork must always have the patient’s health and well being paramount not the legal department of the DOH.

Thread: vCJD
Posted by: J5
At: 13:00, 9/10/2011

 From Christine Lord's blog:

I urge you to watch this report about Holly Mills the longest survivor of vCJD and her parent’s pleas for research to continue into the horrific brain wasting disease that has killed so many. Experts are warning that ‘One in a thousand of the population may be carrying or incubating the disease’, and yet the UK Government and Department of Health are cutting back in every area of vCJD research. This has nothing to do with recession and everything to do with the Conservative led government trying to obliterate any evidence and research that will point the finger at those responsible for BSE and its human lethal pathogen vCJD.
 
CJD ... - Tyne Tees Regional News | North East Tonight - ITV Local
 Another young person has recently been diagnosed with vCJD in the Gloucestershire area born in 1984 this young man would be roughly the same age as my Andrew, my thoughts and prayers are with this devastated family. VCJD continues to kill on a regular basis and lurks in the corner waiting to pounce on its next innocent victims…..
The official ITV home of North East Tonight (ITV Tyne Tees) on ITV Local. Includes Local Regional News, Meet the Team, Full Programme Catch Up & Tyne Tees ...
www.itv.com/tynetees/cjd-research-campaign55359/

Thread: vCJD
Posted by: J5
At: 13:40, 2/9/2011

From Christine Lord's blog:

Friday 2nd September 2011Andrew

Today my Andrew would have celebrated his birthday, instead I will walk to his grave with fresh flowers and then release some balloons above the city to remember my only son. The fourth birthday without my son Andrew ……..the pain is as raw as ever.

‘Time heals’, ‘moving on’ that is never an option my heart will be forever broken.
Even the act of mourning is denied parents and families who have lost loved ones to vCJD because as David Hare wrote in his political thriller ‘ Page Eight BBC1 Sunday 28th August 2011,’
‘You can only begin to mourn when you know the facts.’
The facts and truth behind vCJD have never been revealed and remains ‘top secret’ within the corridors of Whitehall to protect those responsible. I will continue to honour those promises I gave my dying son to expose those responsible and help prevent future deaths. Time hasn’t dimmed my anger or determination and one day soon those culpable will face the wrath of the legal system and eventually their god.
Below is part of a song from the musical Les Miserables sang by ValJean which I dedicate to my beloved boy Andrew on what should have been his 28th birthday.
BRING HIM HOME Christine and Andrew
The summers die,
one by one.
How soon they fly
on and on.
And I am old
And will be gone.

Bring him peace,
bring him joy.
He is young,
he is only a boy
You can take,
you can give.
Let him be,
let him live.
If I die,
let me die.
Let him live.
Bring him home, Bring him home, Bring him home. 

Thread: vCJD
Posted by: J5
At: 10:33, 11/8/2011

 From Christine Lord:

 
 
 
 
 

Wednesday 10th August 2011Kate with the cows

Since early 1980s when BSE infected material entered the human and medicine chain cases of sporadic cjd/ dementia have increased dramatically. Pre BSE sporadic CJD (naturally occurring form of the disease which is spontaneous and usually in the elderly) was ‘one in a million ‘ now Professor John Collinge and other experts in prion diseases state that in the UK individuals now have ‘1 in 33,000 chance of developing cjd during their lifetime’. These rising cases have nothing to do with better diagnosis or an ageing population as this has been taken into account, this huge increase is worrying. The numbers of younger people succumbing to sCJD here in the UK and across the globe is un-precedented.
It would appear scientific knowledge and these experts including Professor Collinge’s integrity is now being questioned and rubbished by UK Prime Minister David Cameron who has told me ‘ I understand there is no evidence that would support a suggestion that one in 33,000 people are developing cjd’ july 18th 2011
I was a member of the audience when Professor Collinge, Simon Mead and various other prion experts revealed the fact that ‘1 in 33,000 in the UK would develop cjd’ this was during a packed and recorded lecture at the National Neurological hospital in central London December 2008. So is Cameron calling these world experts liars?
My investigation, published papers from global experts in prion disease have revealed that sCJD continues to rapidly rise with worrying much younger cases, this is a fact that the UK Prime Minister is denying. BUT AS LEADER OF THE SAME POLITICAL PARTY WHICH CREATED BSE HE WOULD WOULDN’T HE?
Experts have also told me in recorded interviews that ‘At Post Mortem/autopsy middle-aged and older people who may well have died of vCJD their brain pathology can and does present like ‘sporadic cjd’. Continuing ‘We have had cases where the brain lesions can be seen as both sporadic and vCJD.’ concluding ‘we have been told not to record vCJD.’
At least 300 people who have died of sCJD or was it vCJD? in the UK were life long blood donors, their blood given to thousands of individuals across the UK. I believe these recipients of blood/blood products/vaccines are at risk but they like thousands of other people across the globe are oblivious.
Cases of sCJD are rising not just in the UK but globally and there are clusters of cases of sCJD in the same areas as younger people are dying of vCJD. This points at a common source of infection, the UK government and its scientists are aware of this source but it’s being kept ‘top secret ' too many in the UK establishment would be immediately culpable.
Below are just two more incidents of sCJD here in the UK, the first press article examines the death of a Mr Corbett from the county of Gloucester where currently there are young victims dying of vCJD. Mr Corbett’s symptoms and length of illness is typical of vCJD. Although the human form of BSE predominately affects younger people I have talked at length with wives who have lost their husbands to vCJD in their sixties (the victims had not received blood transfusions) . So it’s more than possible for older people to develop vCJD and many farmers, farm hands and farmers’ wives have died of vCJD. With this blog is a photo of vCJD victim Kate Richer on vacation at a farm where she use to help milk the cows. University Graduate Kate died aged 22.
The second case of Durham man Bob Wall has now been overturned and the Edinburgh CJD unit is saying it’s probable or possible case of sCJD. There have been clusters of vCJD cases in the Durham area.

This is Gloucestershire | Cheltenham man dies of CJD.
www.thisisgloucestershire.co.uk/Cheltenham.../story.html

August 5th 2011
A CHELTENHAM man died from CJD, the extremely rare degenerative neurological disorder, a coroner has ruled at an inquest.
However, Richard Corbett's death was not related to mad cow disease, the coroner said, even though he had worked with cattle.
The inquest at the Seasons Conference Centre in Cheltenham heard that the type of the disease Mr Corbett had contracted had no proven link to bovine spongiform encephalopathy (BSE).
Gloucestershire deputy coroner David Dooley was told that the 66-year-old was a resident at St Faith's Nursing Home, in Malvern Road, Cheltenham, where he died on May 19 last year.
He had been a management consultant, his sister Anne Oxley-Corbett told the inquest. He never married, but had a daughter who lives with her mother, she added.
"As well as being a management consultant, he also reared calves and sold them through the livestock trade," she said.
"He was fit and well until July 2008 when he started to have mental problems.
"He was eventually referred for psychiatric diagnosis and it was thought he had some type of Alzheimer's disease.
"He deteriorated week by week and had to go into full-time nursing care in October 2009. His condition was never fully diagnosed, even though he had several sets of tests and the time from the onset of the disease to his death was so short."
A joint postmortem examination of Mr Corbett's brain by experts Dr Declan McGoyne and Professor Seth Love found widespread changes in keeping with CJD. These were of the very rare sporadic MV2 sub-type of the disease, which was not linked to BSE.
Recording a verdict of death by natural causes, the coroner said Mr Corbett had been in close contact with animals for many years but that the CJD linked to BSE could only be caught by the ingestion of the infected protein from older animals.
"And it only affects younger humans," he said.
"This was an older man who worked with young calves."
He said Mr Corbett's death had been from a naturally occurring disease that had run its normal course.
The Health Protection Agency said after Mr Corbett's inquest that the strain of CJD he had developed occurred worldwide at a rate of just one case per million per year.
It said variant CJD was strongly linked to exposure, probably through food, to BSE, but that the sporadic CJD, which Mr Corbett died from, was not linked to BSE.
Durham businessman dies of 'mad cow disease'
· by Alastair Craig, The Journal, July 23 2011.
A NORTH East business executive has died just weeks after being diagnosed with the rare Creutzfeldt-Jakob Disease, the human form of mad cow disease.
Bob Wall, a married father-of-one, was managing director of a division of the highly successful construction firm Esh Group, based in County Durham.
An inquest into the 51-year-old’s death is expected to be opened shortly, following his funeral at All Saints’ Church in Lanchester, County Durham.
Creutzfeldt-Jakob Disease (CJD), or ‘human BSE’, is linked to consuming contaminated beef and came to worldwide prominence in the late 1980s and early 1990s as “mad cow disease” swept the UK and Europe.
Mr Wall, from Waterhouses, near Durham city, was the managing director of Deerness Fencing, one of the region’s largest manufacturers and installers of timber and metal partitions, with clients including Yuill Homes, UK Coal and local.
The firm is a subsidiary of the Durham-based Esh Group, and was founded in 1976 by Michael Hogan.
Mr Hogan, now development director and a major shareholder at Esh Group, last night paid tribute to his former MD, describing him as “an inspirational role model for young business people”.
In 2006, Mr Wall accepted a Journal business award on behalf of the firm for its excellent work in the community.
“I have known Bob for some 13 years and, how to give tribute to him, I just don’t know where to start,” said Mr Hogan.
“What I will say is that as a work colleague he gave 100% and constantly pushed himself for improvement.
“He was a genuine one-off, this level of commitment however was regarded as normal by Bob.
“When he took up the managing director role of Deerness Fencing he improved the business I’d owned and ran for some 20 years beyond all expectations and we as Esh Group will be forever grateful to Bob for this.
“To the other managers and directors of the group I’m sure he was a role model they aspired to. 

Thread: vCJD
Posted by: J5
At: 16:10, 2/8/2011

 From Christine Lord:

Transmission of vCJD/Cjd via blood products and contaminated instruments is a significant threat. In the last few months at least 50 people in England have been informed that they are now ‘at risk’ of cjd due to the contamination of instruments used on them during operations.

These people like the thousands of others across the UK who now have a ‘ at risk of cjd status’ is unacceptable when blood screening tests to protect hospital patients are being sidelined and blocked by the UK Department of Health. These silent unseen ‘living victims’ never appear on any official statistics that are available for public scrutiny. A confidentiality clause is used not to protect patients but to conceal the numbers of people exposed to vcjd/cjd, a list that is growing.

Original paper can be found here –


http://content.karger.com/ProdukteDB/produkte.asp?Aktion=ShowPDF&ArtikelNr=328646&Ausgabe=255367&ProduktNr=224263&filename=328646.pdf

http://content.karger.com/produktedb/produkte.asp?doi=328646

 

Thread: vCJD
Posted by: J5
At: 22:26, 26/7/2011

 From Christione Lord's blog on her website: Justice for Andy

http://www.justice4andy.com/

 

Tuesday 26th July 2011Irhad and Indira

It is with deep regret that I inform readers of the blog that Irhad Rivzo who was diagnosed with vCJD April 2010 has died this morning at 3.45am.

He was just 24 years old and only arrived here in the UK late 1992 from war torn Bosnia.
Irhad was a brilliant student and looked forward to a career in aviation and was a RAF cadet. A graduate of Thameside University he made many friends and had a wonderful future ahead of him until vCJD struck.
With this blog are photos of Irhad just after diagnois with his mother and one taken just a few months ago during my visit to his home in central London.
Also another photo of Irhad’s collection of model planes and RAF memorabilia which he kept in his bedroom. .
His mother Indiria has been told that Irhad contracted the disease here in the UK. This proves that BSE infectious material continued into the human food and medicine chain for much longer than the UK Government admits.
Irhad was Indira’s only child; I was privileged to spend time with them both at their home. I witnessed the love and bond between Irhad and his mother and the dedication which Indira gave to her son nursing him 24/7 was an inspiration.
My thoughts and prayers are with Indira and Irhads friends and family, may your god go with you.
Do not stand at my grave and weep,
I am not there, I do not sleep,
I am a thousands winds that blow,
I am the softly falling snow.
I am the gentle showers of rain.
I am the fields of ripening grain.
I am in the morning hush,
I am in the graceful rush.
Of beautiful birds in circling flight
I am the starshine of the night
I am the flowers that bloom,
I am in a quiet room.
I am in the birds that sing,Irhad and Indira
I am each lovely thing.
Do not stand at my grave and cry,
I am not there – I did not die. ,.
By Mary Elizabeth Frye (1904) 




Thread: vCJD
Posted by: J5
At: 14:26, 5/7/2011

In the latest scandal surrounding vCJD the Coroners Society of England and Wales have refused to support a study which would show the prevalence of vCJD in the UK population.

The Health Protection Agency recently attempted to create a post-mortem tissue archive which meant taking small amounts of tissue from cadavers during autopsy to find out just how many of us could be or are silently carrying/incubating vCJD.
 
The Coroners Society of England and Wales refused to participate in this survey which has the backing of every expert in the field of vCJD/prion disease and medics/scientists across the UK.
Once again significant evidence regarding vCJD its causes, sources and its prevalence is being blocked and sidelined by a group of individuals who feel they have no moral obligation to protect public health. Once again the forces of evil that created condoned and allowed BSE are weaving their intrigue to prevent important evidence being collected.
 
In a damning paper published from the London School of Hygiene and Tropical Medicines by McGowan and Viens they slate Coroners refusal declaring the success of the archive was prevented; because Coroners could not be convinced to support the study.
The paper says that ‘Coroners are misguided and failed to appreciate that Coroners have moral obligation to protect public health.’
 
It would appear that the Coroners Society of England and Wales are protecting those named and shamed on this website and are indifferent to the health and wellbeing of the general public.
 
Unless a law is passed forcing the Coroners of England and Wales to participate they can stop this or any other archive of vCJD tissue taken place at post-mortem. The law would have to be sanctioned and passed by a Conservative led government who are in no rush to push this law forward as it would highlight the true number of people who have been exposed to BSE.
Meanwhile more people will be put at risk as those incubating or silently carrying vCJD continue to donate blood, tissues, organs and in doing so put more people in danger of developing the horrific brain wasting disease via secondary infection. One blood donor silently carrying vCJD has the potential to infect several hundred people.
 
Many victims of vCJD during the early stages of the disease have been involved in car accidents, the majority of deaths through accidental death in the 17-25 age group is caused through motor car accidents. Many more victims of vCJD have also attempted suicide this is another major cause of death in young people. Surely if a person is already having a post mortem taking just a small amount of tissue from the cadaver to find out if they were carrying vCJD is essential not only to public health but to the grieving family?
 
It would seen the corrosive and complicit corruption that killed my son continues to weave its intrigue and prevent the public knowing the true facts of just how many people are carrying vCJD.
 
Provided by Christine Lord

Thread: vCJD
Posted by: MarkUK
At: 9:35, 24/5/2011

Sent by Christine Lord. For more pictures and updates you can take a look at the justice for Andy website 

Friday 20th May 2011

vCJD Protest

Two young people in their twenties and a young man in his thirties have developed or been diagnosed with vCJD in the UK within the last few weeks. The campaign team and its supporters hold out the hand of friendship and understanding to these heartbroken families and the individuals that are so cruelly dying of vCJD.

We also continue to be a voice for those victims who are unable to defend and can no longer speak out for themselves. In 2011 people continue to die of vCJD here in the UK and across the globe.

Currently many families who receive the shattering news that their loved one has vCJD and will be dead within months after a horrific decline are told by officials from the UK Department of Health ‘Your loved one is the only person who has developed this disease for years’. Siblings have told me they were informed ‘there is no family member we can put you in touch with…. as people don’t get vCJD any more’…or for ‘Confidentiality reasons we cant do that.’

Despite myself and many other family members leaving contact details with all the major hospitals. One London hospital receives up to 20 referrals a month with CJD.

vCJD Protest BannerMy experience of families affected by vCJD is an overwhelming need to speak to others who have been through the horror of this UK man made manufactured disease. Isolating, intimidating and keeping families in the dark, is a vain attempt by the UK government to separate and keep people from talking to each other and discovering the truth.

It’s a terrible indictment of Whitehall and its machinations at how it will stop at nothing to keep the lid on the truth surrounding BSE vCJD Protest Mumsand its lethal pathogen vCJD. When families start to talk to each other coincidences and lifestyle similarities start to become very apparent.

Alongside this blog are more photos of our demonstration to Downing Street and peaceful, protest inside the Ministry of Justice headquarters of Kenneth Clarke. The photo of the three women are mothers, two who have lost sons to vCJD and another single mum of two who is at ‘risk’ of developing vCJD due to a blood transfusion in 2008.These dignified ladies were threatened with arrest during their respectful protest in the reception area of a accessible public building.

'One death is totally unacceptable from an preventable UK man made disease, hundreds of innocent people being killed is wholesale manslaughter……'

Christine Lord statement to Prime Minister David Cameron,
Downing Street 12th May 2011

Thread: vCJD
Posted by: J5
At: 19:29, 24/4/2011

 Sent by Christine Lord:

Mother takes law degree to help in CJD legal battle

When her teenage daughter died from a degenerative brain disease, Annie McVey channelled her grief into studying law to help mount a legal battle for compensation.

The 53-year-old has now graduated from the Open University with a Bachelor of Law honours degree.

Ms McVey dedicated the degree to the memory of her daughter Claire, who was just 15 when she died from variant Creutzfeldt-Jakob Disease (vCJD), the human form of the ‘mad cow disease’ bovine spongiform encephalopathy (BSE).

She said studying law was something her daughter may well have gone on to do had she lived.

 “Claire had been interested in law and she might well have gone on to study it herself if she had the chance,” said Ms McVey, from Kentisbury Ford, near Barnstaple.

“She’s a terrible loss to the family, it should have been us going to her graduation ceremony.”

Claire, who died in 2000, was one of only 177 known victims of the terrible disease worldwide.

Her death plunged her mother and other victims’ families into a long battle for compensation over the links between vCJD and eating beef from cattle infected with BSE.

She began her studies with the Open University in 2004, despite suffering from debilitating Post Traumatic Stress Disorder.

“When Claire died, we were thrown into this political and legal melee, but it wasn’t a legal system that I recognised,” she said.

“There was this yawning gap between the pure sense of justice that most of us have, and the legal system I was suddenly involved in.

“I felt I needed to understand it.”

Ms McVey is disabled and the Open University was able to support her in her studies, allowing her to take exams at home and giving her extended deadlines on coursework.

She said working on the degree really focused her efforts.

“My health has actually improved while I was doing the course, and I think a large part of that is the discipline of the OU and having to meet deadlines,” she said.

“It was also a good distraction and I met some fantastic people. It also made me more argumentative and more determined.”

Last year Ms McVey and other families took their case to the High Court over what they claimed was a flawed Government compensation scheme.

But their challenge and a subsequent Court of Appeal action failed.

She now plans to become a qualified legal executive, and hopes to go on to take a Masters degree in Medical Ethics.

Ms McVey has become an inspiration to the rest of her family, who are now continuing their education.

“My partner Wayne and other members of the family are now following my example and studying with the OU.”

 

Congratulations to Annie from all of us here at TB!  We know that this will in no way make up for the tragic loss of your daughter, but, as Christine says, she would be so proud of her mum!

Sue

Thread: vCJD
Posted by: Richard W
At: 15:37, 11/4/2011

BBC Inside Out - ' Who Killed My Son ? ' - Andrew Black and vCJD

Christine Lord helped to produce a film about Andrew's last days and her search for truth and justice for her only son.
This award winning story is of his mother's search for answers, as she tries to find out who was responsible for killing him.

Variant CJD is a serious potential threat to all Haemophiliacs.

Intv : Joe Crowley - Broadcast : May 2008

Website :
www.justice4andy.com

Thread: vCJD
Posted by: J5
At: 19:24, 10/2/2011

 I've just been sent this by Christine Lord, who many of you know from the Justice for Andy website.  It's scary.

Sue


PRODUCT

1) Plasma. Recall # B-0737-11;

2) Red Blood Cells Leukocytes Reduced. Recall # B-0738-11

CODE

1) and 2) Unit: 6050188

RECALLING FIRM/MANUFACTURER

Recalling Firm: Blood Centers of the Pacific, San Francisco, CA, by
telephone on October 25, 2005.

Manufacturer: Blood Centers of the Pacific, Fairfield, CA. Firm initiated
recall is complete.

REASON

Blood products, collected from a donor who was at risk for variant
Creutzfeldt-Jakob disease (vCJD), were distributed.

VOLUME OF PRODUCT IN COMMERCE

2 units

DISTRIBUTION

CA and Austria

___________________________________

PRODUCT

1) Plasma Frozen. Recall # B-0749-11;

2) Cryoprecipitated AHF. Recall # B-0750-11;

3) Plasma. Recall # Recall # B-0751-11;

4) Red Blood Cells (Apheresis Leukocytes Reduced. Recall # B-0752-11;

5) Red Blood Cells. Recall # B-0753-11;

6) Fresh Frozen Plasma. Recall # B-0754-11

CODE

1) Unit: W038510802868;

2) Unit: W038510801483;

3) Units: W038510801483; 5304070;

4) Units: W038508801002; W038508801002; 8014671; 8014671; 8013787; 8013787;
8013005; 8013005;

5) Units: W038510802868; W038510801483; 5304070; 2033005;

6) Unit: 2033005

RECALLING FIRM/MANUFACTURER

Walter L. Shepeard Community Blood Center, Inc., Augusta, GA, by fax on
September 13, 2010. Firm initiated recall is complete.

REASON

Blood products, collected from a donor considered to be at increased risk
for variant Creutzfeldt-Jakob Disease (vCJD), were distributed.

VOLUME OF PRODUCT IN COMMERCE

17 units

DISTRIBUTION

Israel; Korea, Republic Of (South), SC, TN, GA

___________________________________

___________________________________

PRODUCT

1) Red Blood Cells Leukocytes Reduced. Recall # B-0758-11;

2) Recovered Plasma. Recall # B-0759-11

CODE

1) and 2) Unit: 1615343

RECALLING FIRM/MANUFACTURER

Blood Centers of the Pacific, San Francisco, CA, by telephone on May 1,
2007. Firm initiated recall is complete.

REASON

Blood products, collected from a donor considered to be at increased risk
for variant Creutzfeldt-Jakob Disease (vCJD), were distributed.

VOLUME OF PRODUCT IN COMMERCE

2 units

DISTRIBUTION

CA, Austria