Thursday, September 02, 2010

UK bans ME/CFS blood donations as of November 1, 2010 – Department of Health announces

UK bans ME/CFS blood donations as of November 1, 2010 – Department of Health announces

The ME Association ( posted the following on Friday, Aug 27

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.

ME Free For All : Re: When doctors cannot diagnose disorders

ME Free For All : August 2010

Re: When doctors cannot diagnose disorders, Sunday Times of Malta, 29 August 2010

The headline of Nikki Abela Mercieca's article (When doctors cannot diagnose disorders, Sunday Times of Malta, 29 August 2010), about the difficulty of getting a diagnosis of M.E. (Myalgic Encephalomyelitis) may be read as an incomplete sentence, to which the consequence could be added: that millions of people, worldwide, are left, as our former Chief Medical Officer, Sir Liam Donaldson, acknowledged, in the wilderness. They become isolated because, when all the blood tests, to rule out other illnesses, have been conducted, further investigation ceases. Patients are too ill, often housebound or bedridden, to be able to get to the doctor, who has nothing to offer them anyway and the doctor won't make a house call for the same reason.

Nikki might have chosen "will not", rather than "cannot" because some doctors, all over the world, do diagnose Myalgic Encephalomyelitis and then the consequence becomes quite different: patients have a diagnosis that they are genuinely ill, not merely experiencing fatigue, due to overexertion, which might be remedied by lifestyle changes and that they are definitely not malingerers, hypochondriacs, or attention seekers. It also allows doctors and researchers, who do not assume that because a physical cause has not been found and therefore, the illness must be of psychiatric origin, the alternative option that there is an organic one yet to be discovered. But the fact that Nikki refers to the doctor who diagnosed Nicola Reiss with M.E. as "brave" suggests that there is something defiant or rebellious about those who challenge the medical establishment that M.E. is best thought of as a Chronic Fatigue Syndrome and simply managed with Cognitive Behaviour Therapy (CBT) and Graded Exercise Therapy (GET). a principle generally followed, despite there being no reduction in those remaining ill for decades. Lamentably, there is no government funding for those wishing to conduct the promising biomedical research, which may provide the solution..

One would think that a finding as exciting as the presence of a new retrovirus, XMRV, in more than two-thirds of sufferers but only 3 or 4% of matched healthy people (Lombardi et al, October 2009), would stimulate trials to discover whether there is a causal relationship and possible treatment by antivirals. There are some intelligent hypotheses, such as that XMRV, might be a catalyst for other viruses lying dormant, or recurring, which might explain, for example, why some people who become infected with Epstein Barr (Glandular Fever), Herpes Zoster (Shingles), Flu or other viruses get over them, never to be troubled again, while others have M.E., possibly for life. But the work has had to be largely conducted using private or charitable funding, against a sceptical and sometimes hostile opposition from the established psychiatrists, whose theories have never been so contested.

It is debatable whether, as the unnamed doctor in Nikki's article asserts, "we cannot endorse what we cannot see", since we accept other illnesses without perfect knowledge but it is unforgivable to neglect searching for a cause when " what we know for sure is that they are suffering."

Yours sincerely
Dr John H Greensmith
ME Free For