An ongoing dialogue on HIV/AIDS, infectious diseases,
October 17th, 2009
Is Chronic Fatigue Syndrome Another Retroviral Disease?
Here’s a surprising report in Science:
Studying peripheral blood mononuclear cells (PBMCs) from CFS patients, we identified DNA from a human gammaretrovirus, xenotropic murine leukemia virus-related virus (XMRV), in 68 of 101 patients (67%) compared to 8 of 218 (3.7%) healthy controls … These findings raise the possibility that XMRV may be a contributing factor in the pathogenesis of CFS.
I confess, I had never even heard of “xenotropic murine leukemia virus-related virus” (wow that’s a mouthful) before this report, but apparently virologists have been aware of it for some time, due to a possible association with prostate cancer.
The story behind the Whittemore Peterson Institute reporting these findings is almost as interesting as the paper itself. From their web site:
In September of 2004, a group of dedicated citizens and clinicians proposed the concept of a medical institute for the millions of patients in the US suffering from the disorders known as Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), fibromyalgia and other closely related illnesses. They were concerned by the lack of available doctors to understand and serve the growing numbers of patients with these complex chronic illnesses.
According to the coverage of the story in the Times, the Institute got its start with a several million dollar donation from Annette and Harvey Whittemore, whose child has been suffering from CFS for over twenty years. The Times piece goes on to quote Dr. William Reeves from CDC, who sounds quite skeptical about the findings.
“We and others are looking at our own specimens and trying to confirm it,” he said, adding, “If we validate it, great. My expectation is that we will not.”
My take on all this? Despite our being down this road before on CFS — EBV, HHV-6, candida, enterovirus, parainfluenza, Lyme, to list a few putative causes — without much to show for it scientifically, I’m all for having multiple groups working on trying to find the cause of this awful disorder, even if it seems likely that there is more than one cause.
And judging from some of the pained, angry, and frustrated comments posted here, I’m clearly not alone.
4 Responses to “Is Chronic Fatigue Syndrome Another Retroviral Disease?”
Paul E. Sax, MD
Contributing Editor
NEJM Journal Watch
Infectious Diseases
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Doctor, I believe your clinical skills are about to be called on because CDC is fixing to wake up quite soon with an enormous headache. You see, CDC has promoted the theory for the past twenty plus years that CFS is no more than psychoneurosis, with Dr. William Reeves, head of CDC’s CFS Research Program, being on record multiple times stating that CCRP views CFS to be an ‘illness'(as specifically and explicitly opposed to disease) which affects the ‘female gender'(again, as specifically and explicitly opposed to female sex, which is known to be more susceptible to autoimmune disease), possibly because ‘women are treated differently than men in society'(all direct quotes from CCRP representatives).
In response to a call for public input in regards to CCRP’s proposed 5 Year Plan, the Chronic Fatigue Syndrome Advisory Committee(unanimously), which advises the Secretary of Health and Human Services on CFS, the Intl. Assoc. for CFS/ME, the largest CFS/ME professionals group in the world, and the nation’s largest CFS patient group, the CFIDS Assoc. all called for ‘progressive new leadership’ at CCRP.
It probably would make for a rather interesting subject to ask Dr. Anthony Komaroff, who is also at Brigham and Women’s Hospital, if he would feel like having a conversation on the matter.
So…I’m wondering, did you read the article in Science? How this finding compares to ones of the past really depends on the specifics…like the statistical strength of the correlation. I don’t think the work on any other viruses and CFS has ever gotten a P-value of 8.1 x 10 the neg 35th power when comparing controls to CFS patients before. I really think people, especially those with relevant credentials, have a responsibility to look at the actual science involved. Why not offer a more specific, more informed take on this important area?
Priscilla,
I certainly did read the article, and we even reviewed it in our journal club!
I too hope this is the cause of CFS — people with this condition are suffering greatly, and finding at least one major cause would be the best chance to find an effective treatment. However, it is quite reasonable (in my opinion) to leave open the inquiry given the large number of promising leads identified previously — many of which have turned out to be erroneous.
Paul
Paul,
Erroneous according to whom? Unfortunately, some scientists don’t check their ideology at the door. The worst that can be said is that psychosocial researchers and expert virologists have not always agreed.
Other infectious agents have been objectively verified by CFS experts since the early 1980s, the main issue has always been association or causation. Dr. Komaroff has been in on that research since the 80s including working with Dan Peterson, who was one of the researchers involved in the XMRV CFS study.
It should also be noted that retroviruses are notorious for re-activating other latent viruses such as EBV and HHV-6A. Reactivation of such viruses have long been proven to be happening in well-defined CFS subsets. Studies also show that the leading causes of death in patients with CFS are cancer (many virally linked or induced such as the XMRV-related cancers found in the WPI study) and heart failure both far earlier than normal for the general population.
Like your blog.