Chronic fatigue syndrome sufferers cannot donate blood

Mary Schweitzer

Sep 6th 2010, 23:04

Correction: the "Science" article that found the new retrovirus XMRV in 2/3 of a sample of just over 100 patients was published in October 2009, not 2008. My apologies.

Mary Schweitzer

Sep 5th 2010, 00:16

The newly discovered virus XMRV (Xenotropic Murine-Leukemia-Virus [MLV] Related Virus) is a retrovirus, only the third known human retrovius (the other two are HTLV and HIV - the former causes rare leukemias and the latter causes AIDS). The Lo-Alter finding of other strains of MLV's confirms the "Science" study of October 2008 that found two-thirds of a sample of "Chonic Fatigue Syndrome" (CFS - Fukuda definition, 1994) patients had XMRV.

A retrovirus differs from other microbes in that it inserts itself into DNA, where it will always remain, even when the patient is asymptomatic. This is why it is wise that anyone who EVER had a diagnosis of ME or CFS should not give blood until we know more. It has to be mentioned that historic ME is closer to CFS-Fukuda than the British definition of CFS. The latter assumes the disease is psychogenic, whereas psychiatric diagnoses are exclusionary in Fukuda.

I participated in the "Science" study, and I am positive for XMRV. I became ill 2500 miles away from Nevada in the Philadelphia area. I belong to a subset that suffers from chronic immune defects and opportunistic viral infections.

My compliments to the Times for carrying this story.

Jo Best

Sep 5th 2010, 00:09

With regard to a biomarker for this neuro-immune disease, here is news from Catalunya that the retroviral link is now felt to be so strong that this test has been recommended for use as a biomarker for M.E (SFC as it is known in Spain).

http://www.tv3.cat/videos/3070410/Estudien-la-relacio-dun-virus-amb-la-fatiga-cronica-i-la-fibromialgia

Jo Best

Sep 5th 2010, 00:03

Thank-you for reporting on this important issue. The very strong link between M.E and MLVs found in the FDA/NIH/Harvard study, which confirms those of the 2009 WPI/Cleveland Clinic/National Cancer Institute study (XMRV) has prompted UK and Malta to follow the lead of other countries by imposing a lifetime ban on blood donation by patients with a history of M.E. There is also the issue that, as MLVs were found in 7% of healthy controls, some of whom were blood donors, they are already likely to be in the blood supply. A Belgian study has now also found a new retrovirus in M.E patients, so we know this is in Europe as well as USA. Research on determining how MLVs are transmitted and on producing a reliable test for the presence of MLVs is paramount in order to prevent possible of spread of infection by MLVs in the population. It's important to stress that MLVs and XMRV belong to a family of retroviruses, they are not ordinary viruses. A retrovirus writes itself into the DNA. The two other retroviruses known to infect humans are HIV (AIDS) and HTLV (T-cell leukaemia and T-cell lymphoma). Please continue your reports on these important developments.

maria grech ganado

Sep 4th 2010, 15:05

I haven't much to add to the comments already published except my support. It is actually impossible for anyone suffering from ME or Fibromyalgia (which I myself suffer from) to even think of donating blood, it is such a debilitating condition; and even in remission I think patients would be careful not to subject others to such bewildering and painful symptoms. However, this news ought to do much as a wake-up call for those doctors who have not respected the suffering of these conditions, as also as positive information for the few who do.

John Greensmith

Sep 4th 2010, 13:43

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.

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 loud 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 between M.E. and XMRV.

drjohngreensmith@mefreeforall.org
Dr John H Greensmith
ME Free For All.org
United Kingdom

S Vella

Sep 4th 2010, 12:49

Children can also suffer from ME. It is very easy to assume that a child is lazy when in reality a child is suffering from a serious illness. Teachers and parents need to pay more attention to this possibility!
More info on children and ME at:
http://www.tymestrust.org

Rebecca Sultana

Sep 4th 2010, 12:36

ME Sufferers Malta has been expressing their concern regarding the need for appropriate education and training of health care professionals. Hopefully this breakthrough news will make amends for this tragic lack.
Doctors and specialists need to know how to clinically assess and diagnose ME patients at an early stage, based on a consistent set of up-to-date diagnostic criteria, and advise patients on appropriate forms of health management.
According to research funded by the ME Association UK last year, early diagnosis and sympathetic supportive management appear to be the determining factors affecting prognosis in ME, that is, whether or not the patient develops a severe form of the disease.
There are some 5,000 papers of biomedical literature on ME going back to 1934, and it has been classified as a neurological illness by the World Health Organisation since 1969. Despite this, sufferers feel that most local medical practitioners, specialists and consultants are not up-to-date with such medical information, and this usually results in inadequate or non-existent medical help and a very unsympathetic ear!
I trust this situation will change drastically, especially when more research enlightens us and brings to light the horrifying experience a person with ME goes through every day!

Nicola Reiss

Sep 4th 2010, 11:14

The spokesperson in the article claims that testing for ME is not possible. However doctors in other countries have developed appropriate tools for diagnosing ME. Some of these can be found by following these links:

http://esme-eu.com/
http://www.nightingale.ca/documents/ComplexitiesofDiagnosis.pdf
http://www.hfme.org/mesymptoms.htm
http://www.cfids-cab.org/MESA/AU_CFS.pdf

Local people suffering from ME are encouraged to join the ME Sufferers Malta e-mail list either via the website: http://www.mesufferersmalta.org/ or look for our group of the same name on Facebook.

Nicola Reiss

Sep 4th 2010, 10:53

I am glad to see this ban finally in place. The local group "ME Sufferers Malta" has been advocating this step for some time now.
Even more important is the question: Does this mean that doctors in Malta, especially GPs, will finally begin taking people with ME symptoms seriously? Will local doctors begin educating themselves on this debilitating illness, so that they can provide sufferers with at least a minimum of support and understanding? Will local doctors learn how to correctly diagnose this illness and differentiate it from other causes of fatigue? Will doctors learn to differentiate between 'fatigue' and orthostatic intolerance, post-exertional malaise and brain fog? Will doctors learn how to provide effective relief from these symptoms that are causing enormous suffering to hundreds of people in Malta? And will the government provide social security support - disability payments and other social services - to people suffering from ME who are no longer able to work due to their debilitating symptoms?
The time has surely come for a major shift in attitude towards people who have been treated so badly for so long by the medical community.

Beatrice Gatt

Sep 4th 2010, 10:52

For decades this condition has been ignored and often ridiculed by doctors, the media and the public alike. Last October, in a peer reviewed scientific paper it was linked to a new retrovirus. This has now been confirmed by the FDA. It is about time that ME/CFS patients get the necessary medical attention and social support to ease their suffering. This is a severe and debilitating illness with no cure. It is defined by a cluster of symptoms that must have persisted for over six months with no other medical explanation. Fatigue, pain and post-exertional malaise are key indicators. The name ‘chronic fatigue syndrome’ can be misleading as often people think that having ME/CFS is just being very tired. This is incorrect. The severity of ME/CFS can vary considerably; some people are bedridden, others are able to manage degrees of activity. Some people with ME/CFS may be able to continue work and participate in social activities, others are unable to. A great asset for people with ME/CFS is to have knowledgeable and supportive people around them.