Posted by: Maff on Oct 16, 2009
Since Thursday of last week when news of research linking the XMRV retrovirus to chronic fatigue syndrome hit the headlines many patients (and I suspect their doctors) have been wondering what exactly this finding means.
The amount of media attention this discovery by the Whittemore-Peterson Institute for Neuro-Immune Disease (WPI) generated in the press was unprecedented. After having the WPI press release delivered to my email inbox, the next day my mum handed me a copy of The Independent (one of the major "serious" national newspapers in the UK) with a front page article asking 'Has science found the cause of ME?' There was also an editorial piece coming down squarely on the side of us much maligned chronic fatigue syndrome (ME/CFS) patients and concluding that it was about time we were taken seriously.
It is rare to find any ME/CFS news in the mainstream media but the story was the same across the board. The London Telegraph stated 'Most cases of chronic fatigue syndrome linked to virus', 'Virus Is Found in Many With Chronic Fatigue Syndrome', reported the New York Times, while the Washington Post ran with 'Virus Associated With Chronic Fatigue Syndrome'. So the media certainly thinks this is a big deal for us ME/CFS patients but what does the wider ME/CFS community, including patients, doctors and researchers, think of the results of this study.
One can't help but note that this is not the first time a virus has been seen as the cause, or at least a major contributor to ME/CFS, with the Epstein-Barr Virus (EBV) and Human Herpes Virus 6 (HHV-6) being prime examples. Both have been found in significant numbers of patients. Indeed even a retrovirus such as XMRV, which is now causing such a stir, has previously been found in ME/CFS patients.
Dr. Elaine DeFreitas of the Wistar Institute in Philadelphia discovered in the early 1990s a novel human retrovirus in ME/CFS patients. Her finding was subsequently confirmed by two other prominent researchers as well as a commercial laboratory. After Dr. DeFreitas had published a meticulous paper in a top journal and was almost done sequencing the virus' genetic code the The Centers for Disease Control and Prevention (CDC) and the National Institutes of Health (NIH) reportedly engaged in a smear campaign against her as her findings did not fit with their psychological views of the causes and symptoms of the disease. The work was not finished and no other researcher has dared take up the baton.
So is XMRV THE cause of ME/CFS and the key to successful diagnosis and treatment as the avalanche of media attention may lead some to believe? In a Q&A session in the New York Times, Dr. Nancy Klimas, an immunologist specialising in ME/CFS and a board member of International Association for Chronic Fatigue Syndrome (IACFSME), is cautious.
She states that "It is important not to take these new findings about the XMRV virus as anything more than an exciting new development. We need confirmatory studies, then studies to see if the virus is contributing to the cause of illness persistence and symptoms."
"The good news is that if XMRV is linked to C.F.S., there are many antiviral drugs that have already been safety tested in H.I.V. that may inhibit viral replication. So those studies could be designed very rapidly."
Dr. Klimas also suggests (and many experts will no doubt agree) that XMRV may be just one of several viruses including EBV, HHV-6 and enteroviruses, that may become reactivated in people with ME/CFS due to immune dysfunction - rather than actually causing the disease
The researchers at WPI who conducted the study, led by Judy Mikovits, Ph.D., themselves cautioned that the results far from prove that the virus causes ME/CFS. They admit it may be well just be part of the picture. They suggest that the virus may at least contribute to the development of the disorder, however.
William Reeves, head of the CDC's CFS research programme, says the findings are "unexpected and surprising" and that it is "almost unheard of to find an association of this magnitude between an infectious agent and a well-defined chronic disease, much less an illness like CFS". The CDC and Reeves have been widely criticised by the ME/CFS community for lack of progress in uncovering the cause(s) of the disease but Reeves says the CDC is already trying to replicate the WPI findings.
The patient community online has been a buzz over the past week since the news of the findings first broke. Cort Johnson, friend of The Environmental Illness Resource and respected ME/CFS research reporter, has set up a forum section specifically for XMRV-related topics on his website Phoenix Rising which already has many hundreds of posts. ME/CFS patients all over the world are using the internet to discuss what the study results mean for them. Will this lead to a diagnostic test and treatment? Does this mean ME/CFS is contagious? Does ME/CFS run in families? These are just some of the question being asked.
My own feelings are that the discovery of the XMRV retrovirus in so many ME/CFS patients is certainly important but needs to be confirmed by other studies. I think it is likely to turn out to be another piece in the puzzle of what is an extremely complicated disease rather than THE breakthough the media frenzy would suggest. As Dr. Klimas pointed out one major positive is that drugs to fight retroviral infections are already well studied and widely available due to the huge research effort into the HIV virus. If the XMRV findings are confirmed then these treatments may turn out to be effective in at least a subset of XMRV-infected ME/CFS patients as well.
However, the biggest positive to come out of this research by WPI in my humble opinion is not the result itself but the kick in the behind it seems to have given the CDC and other governmental and medical organisations to get their acts together and seriously investigate ME/CFS. Let's hope WPI and other independent and semi-independent ME/CFS research institutes continue to further our understanding of the disease and force more action from governments and the medical profession.
What are you thoughts on all this? Please let us know in the comments section below and in the forums.
About: Matthew Hogg ("Maff")
Diagnosed with M.E./chronic fatigue syndrome aged only 11 years old and subsequently associated illnesses including irritable bowel syndrome (IBS) and multiple chemical sensitivity (MCS). Despite his own struggles he has constantly sought to educate and support others suffering from such "invisible illnesses" through his website, The Environmental Illness Resource. He fully recovered from MCS using his own approach and holds a Bachelor of Science Degree in Nutritional Health.