Sunday, August 29, 2010

People with ME banned from Donating Blood

On 27 August, the UK Department of Health issued a ban on people with ME donating blood.  Previous bans, such as that issued by International Blood Transfusuin Services in Holland, were because of the risk of spreading newly detected retrovirus XMRV.  They estimated that the blood supply was possibly contaminated.

The UK ban is apparently about "donor safety".  You can read about it HERE in the original, but I will copy and paste an excerpt below:

People with ME/CFS to be permanently excluded from giving blood in the UK from 1 November this year - Department of Health announcement

The Department of Health has decided to ban blood donation permanently from all prospective donors in the UK who report they have had ME/CFS from 1 November this year. The decision was announced in an email sent to The ME Association today by the Department's Director of Health Protection.

In a brief email, Clara Swinson writes:

"As of 1st November 2010, blood donors who report that they have had ME/CFS will be permanently excluded from giving blood in the UK. This change is being made on the grounds of donor safety, as ME/CFS is a relapsing condition. It brings practice for ME/CFS into line with other relapsing conditions or neurological conditions of unknown origin.

"The change to donor selection criteria is being made following a recommendation by the UK Blood Services Standing Advisory Committee on the Care and Selection of Donors, and Joint Professional Advisory Committee (JPAC)."

The announcement has already been welcomed by contributors to ME/CFS internet forums around the world as further indication that the physical nature of the illness is being taken ever more seriously. Clara Swinson's email does not reveal the extent to which studies into the XRMV virus figured in Department of Health's thinking.


To get back to the closed meeting in Holland where it was decided not to accept ME patients as blood donors because of the probable link with XMRV.
HERE is the link to the Press Release. And a quote from it:

"The highly-experienced Dr. Harvey Alter is Clinical Studies Chief at the Infectious Diseases and Immunogenetics Section of the Department of Transfusion Medicine at the NIH Clinical Center in Bethesda. "The data in the Lombardi, et al Science manuscript are extremely strong and likely true, despite the controversy", was one comment on the XMRV findings reported by Alter in Zagreb. "Although blood transmission to humans has not been proved, it is probable. The association with CFS is very strong, but causality not proved. XMRV and related MLVs are in the donor supply with an early prevalence estimate of 3%‐7%. We (FDA & NIH) have independently confirmed the Lombardi group findings." 


The Times of Malta  had an article on 4 September 2010 titled:

Chronic fatigue syndrome sufferers cannot donate blood 
Chronic fatigue syndrome sufferers are unable to donate blood as studies have raised the possibility that the condition may be linked to a virus.

“We have been deferring donors permanently if they have a history of Myalgic Encephalomyelitis (ME). The reason is not only due to the theoretical risk of viral transmission but also due to donor safety,” the medical director at the National Blood Transfusion Services, Alex Aquilina, said.

The health authorities started implementing such a policy earlier this year. Blood banks across the world are increasingly taking the same measures after new research reinforced a link between ME and the virus.

The condition, also known as post-viral fatigue syndrome, displays fatigue as its main symptom but also gives rise to a wide range of other symptoms, which leave patients suffering from different disabilities. The problem with ME, however, is that there is no test to diagnose it and symptoms can vary, which leaves doctors reluctant to diagnose it.

“If a person who recovered from ME gave blood and then developed a recurrence soon after, this could be blamed on the donation. Since it will not reduce the number of donations very much we felt it was wise to make this decision,” Dr Aquilina said, describing ME as a relapsing remitting condition. The measures were taken according to the precautionary principle of blood donation, he said.

“Donors have always been deferred if they do not feel perfectly well, including if they feel tired. Since the possibility of a viral involvement in ME, a permanent deferral has been put in place since early this year,” he said.

Although the cause of ME is not yet known, a 2009 study had linked a virus to the condition. Although the findings do not prove the virus causes ME, the scientists found evidence of a virus, otherwise known as XMRV, in a higher number of ME patients than in healthy blood donors.

Four follow-up studies did not find such association. However, another study published last month, which also did not find the same virus, but established similar gene sequences of XMRV in 87 per cent of ME patients and seven per cent of healthy blood donor controls. This has raised questions about the safety of blood donations in view of the link to the condition.

A number of national blood banks have discouraged or prohibited people diagnosed with ME from donating blood. These include the Canadian Blood Services, the New Zealand Blood Service, the Australian Red Cross Blood Service and the American Association of Blood Banks. In the UK, people with a history of ME will be permanently deferred from donating blood as from November 1.
Dr John Greensmith of Me Free For All wrote in response:

Doctors, around the world, who were doubtful that there is a physical cause of M.E. (Myalgic Encephalomyelitis) will wonder why one country after another - Canada, Australia, New Zealand, UK and now Malta are specifically excluding M.E. sufferers from donating blood (Chronic fatigue syndrome sufferers cannot donate blood, Times of Malta, 4 September 2010).

All blood transfusion services spokespeople have found some additional reason to cite, such as that it is in line with their policies about any minimal theoretical risk and advice to people who just feel unwell, or suffer from relapsing remitting conditions. Since, however, a ban has not ever been consistently applied amongst M.E. sufferers, nor across other relapsing remitting conditions, until recent studies showing a significantly high presence of the retrovirus XMRV in M.E. sufferers, it does sound a rather large klaxon that this is the direction in which we should be looking and it would be neglectful not to publicly fund bigger, well controlled, studies to confirm or refute a causal link.

Yours sincerely
Dr John H Greensmith
ME Free For



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