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Cheltenham resident takes part in protest over reasons for ME blood ban

By This is Gloucestershire  |  Posted: November 05, 2010

<P>PROTEST:  Alice Reeve says she wants answers over the ME blood donation ban</P>

PROTEST: Alice Reeve says she wants answers over the ME blood donation ban

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ALICE Reeve has taken her fight for greater awareness of the condition ME to London.

The 35-year-old, who suffers from fibromyalgia, a similar condition to myalgic encephalomyelitis, joined a protest sparked by a ban on ME patients giving blood.

Officials say it is intended to protect the health of sufferers of the condition, which is also known as chronic fatigue syndrome.

But the ME Association insists the move is motivated by fears the illness could be caused by a similar virus to HIV and be transmitted through blood.

Alice, who was part of a 50-strong protest outside the Department of Health on Monday, said: "People are still very much being treated as if ME is psychological, so therefore why are they also being banned from giving blood? We want answers."

The Cheltenham resident says she has been suffering from fibromyalgia, which causes widespread musculo-skeletal pain and fatigue, since she was 23, and believes a lot of people with it also have ME.

Last year, she set up Gloucestershire's first fibromyalgia support group, which has about 50 local people on its contact list.

Alice, who suffers from extreme tiredness and pain all over, says the condition has ruined her life.

She said: "You can't live a normal everyday life – your social life goes out of the window as well as your career opportunities."

ME Association spokesman Tony Britton said: "A UK-wide ban on everybody with ME giving blood came into force on November 1.

"The blood and transplant service says this is a precaution to protect a donor's safety by ensuring that their condition is not made worse by giving blood.

"But we think it's more to do with protecting blood supplies from an unusual virus, XMRV, which in some studies has been found to be infecting the blood of people with this illness.

"We welcome the ban as a precautionary measure while the exact nature of the virus is being established."

In the past, donors with a history of ME could give blood, provided they had completely recovered and were feeling well.

But NHS Blood and Transplant says that as ME is a condition where people can relapse and become ill again, donor selection guidelines have changed as a precaution.

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  • Glevum_Girl  |  March 27 2012, 8:13PM

    e-petition Transfer Govt funding of CBT/GET for ME to transferred to Bio-medical methods. http://tinyurl.com/bsafhst

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    Jo Best, Bath  |  November 06 2010, 8:04PM

    Great reporting on this important issue and many thanks to Alice too. I can see how some people will have got the wrong end of the stick that the protest was against the ban. On the contrary, people with ME campaigned FOR the ban, as the very strong between this newly-discovered retrovirus XMRV was made public a year ago. Please note that this research was privately-funded by a non-profit organisation, The Whittemore Peterson Institute. Canada, Australia and New Zealand imposed a ban as a sensible precaution at the time but UK did not see fit to do so, thereby putting public health at further risk until more research was done. Instead, they said it was ok to donate blood if you felt well on the day! They changed their minds when US gov health agencies published research in August (tho the findings were leaked weeks before then) confirming this link, and yet they are now saying it's only for the donor's safety. The questions to ask are: What evidence do they have that someone who has had ME might relapse by GIVING blood? If they are just trying to protect patients with ME, then why they didn't do this DECADES ago? If it's to bring it in line with other relapsing and remitting conditions, then why aren't people with all other relapsing and remitting conditions banned from donating blood too? Rodeo and David are absolutely right that this is a sensible precaution until research shows if there is any real risk from infection with XMRV or MLVs from ME blood, but the point is that neither the government via the DoH, the Blood Service or the Medical Research Council have indicated any INTENTION of funding more research to be able to screen the blood supply, and this is why they are not telling the public the truth about the reason for the ban. This is why we need to protest and campaign for that research to be done. The Medical Research Council has been more than happy to waste MILLIONS of pounds of tax-payers' money on psychiatrists and psychologists for pseudo-scientific ¿research¿ on ME/CFS that has got us absolutely NOWHERE in decades on finding the underlying cause of the ongoing symptoms of ME, let alone treatment and maybe even a vaccine. They have funded NO biomedical ME research, in spite of good quality proposals being put forward. In the meantime, more people have caught ME, suffered and many have died. Research has shown that XMRV moves quickly from the blood to invade almost every organ in the body. This explains the mutlitude of symptoms we get with ME (it's not just about being tired all the time!) and that is why organ donation should also be banned as a precaution because no-one with ME wants to give it to anyone else. I would ask the general public to write to their MP and the Department of Health to demand urgent and very long overdue biomedical research on XMRV and ME/CFS. Many of us may have been saved from infection with this disease if the government had acted sooner. It could be you or your loved next.

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    renethorpe, Rotherham  |  November 06 2010, 3:58PM

    It is unfortunate that people are thinking that people with ME are opposing the blood ban. We are not we all agree with the blood ban. What we do bot agree with is the fact taht despite it being noted in Parliament written answerers that it was partly to do with research showing ongoing viruses, not just teh newly found XMRv but any virus. Who would want to acccept blood filled with viruses when you are sick and immuno compromised as it . At the moment people with ME can still donate organs when it has been clearly shown that XMRV travels quickly to these sites in the body in huge numbers. The ban does not go far enough it should cover organ donation to protect the recipient for possible contamination by a retrovirus one can never get rid off( Like HIV). The ban can always be reversed if it is found XMRv does not cause illness. Prevention is better than a cure especially as people with ME have been waiting for a cure for the last 55 years

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    Laurence Swift, Herne Bay, Kent, England  |  November 05 2010, 6:58PM

    I registered as an organ donor. I caught ME virus (XMRV) nearly 16 years ago and am still unwell although not severely. Fair enough about not giving blood in the present state of knowledge, but can't I RECEIVE blood or organs from other XMRV-positive people? Conversely, can't I donate my organs and blood specifically for XMRV+ve recipients? We're opening a huge can of worms here, as I might also have a permanent infection with Lyme Disease (Borrelia bacteria) and/or its co-infections, bugs like Babesia (a malaria-related parasite) and Bartonella (a potentially fatal bacterium). I wonder how they're going to screen all of these out of the public blood supply?

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    Dr John Greensmith, Bristol, UK  |  November 05 2010, 6:24PM

    There may, indeed, be no evidence that blood from donors with M.E. (Myalgic Encephalomyelitis) could in any way harm a patient, as the NHSBT (NHS Blood and Transplant) has sought to assure the public in a statement. But people with M.E., represented by a delegation of fellow sufferers, who gathered outside the Department of Health on 1st November 2010, the day the ban was implemented, remain unconvinced that its imposition is for their safety, rather than the chance of infecting others and that the size of this risk will not be truly known until research is conducted, checking for the presence of the retrovirus XMRV, which they call for urgently for the benefit of all concerned. The ban has also raised another dilemma for M.E. sufferers who have already agreed to donate organs, whether to withdraw from the list, rather than risk making someone else even worse and they won't be able to make this decision until NHSBT gives some guidance based upon reliable scientific evidence.

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    David, Gloucester  |  November 05 2010, 3:50PM

    If there is a potentially greater risk by receiving blood from ME people then the ban is totally justified until such time it's proven one way or the other

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    Rodeo, Gloucester  |  November 05 2010, 2:42PM

    I can see the need for the government to do more research into ME and Fibromyalgia but I don't see how that relates to campaigning over the blood ban? If there's a chance that the virus could be passed to others via blood transfusions then the government is right to ask sufferers of these conditions not to give blood. If it turns out that the conditions are definitly psychological then the ban can be lifted can't it? Until we know more about these conditions it's irresponsible for sufferers to be giving blood.

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    Sasha, London  |  November 05 2010, 11:35AM

    Thank you for covering this story, Echo! You're ahead of the national media. There is strong research evidence that there should be a serious concern about CFS being caused by the retrovirus XMRV. The same research indicates that XMRV may be present in about 5% of the population so may be in the UK blood supply. A retrovirus is a virus like HIV that once contracted, is with you for life and can be expected to cause very serious health conditions. This is a very serious public health issue and the UK government should be treating it as an emergency. Instead we're seeing the Department of Health fobbing the public off with a story about protecting the health of ME patients with this blood ban. This year other countries have swiftly moved to ban ME patients from donating blood because of fears over XMRV. The timing in the UK is no coincidence. The government should be funding biomedical research into XMRV and the causes and possible medical treatments of ME generally. To its shame, it continues to not fund biomedical research into this condition.

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    Cure_ME, London  |  November 05 2010, 11:24AM

    ME has been recognised by the medical profession for a very long time, about 60 years. Yet now a blood ban is brought in for the benefit of sufferers? I think not. The blood ban is there to protect the nations blood supply from a recently discovered retrovirus found in up to 95% of ME/CFS sufferers. And perhaps more worryingly, it is found in up to 7% of the healthy population. Curiously, the officials do not see any reason to remove any of this retrovirus that is already in the blood supply. Nor do they consider that we should not continue to donate our organs. This is simply an ongoing disaster for those unfortunate enough to contract the life changing/threatening disease ME that the medical profession have ignored for 60 years. Now will they help us with appropriate funding for biomedical research?

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    Cure_ME, London  |  November 05 2010, 11:23AM

    ME has been recognised by the medical profession for a very long time, about 60 years. Yet now a blood ban is brought in for the benefit of sufferers? I think not. The blood ban is there to protect the nations blood supply from a recently discovered retrovirus found in up to 95% of ME/CFS sufferers. And perhaps more worryingly, it is found in up to 7% of the healthy population. Curiously, the officials do not see any reason to remove any of this retrovirus that is already in the blood supply. Nor do they consider that we should not continue to donate our organs. This is simply an ongoing disaster for those unfortunate enough to contract the life changing/threatening disease ME that the medical profession have ignored for 60 years. Now will they help us with appropriate funding for biomedical research?

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