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XMRV and CFS: Time to put things in context

XMRV not cause of CFSThe mainstream media this week have been reporting on events that effectively put the final nail in the coffin of the purported association between the XMRV retrovirus and myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS). Here in the UK the BBC ran a major article in the health section of their hugely popular website titled Virus link to ME called into question (read here).

Those of you keeping track of the XMRV story will remember that in May of this year following multiple studies failing to replicate the original findings of the Whittemore Peterson Institute (WPI) including investigations led by the US Food and Drug Administration (FDA) aand Centers for Disease Control and Prevention (CDC) the journal Science, which published the original WPI study back in 2009, issued an editorial "expression of concern" over the validity of those original findings. Such a move is a rarity in the world of medical journals.

Many in the research community began to suggest that the most likely explanation was that the blood samples used by the WPI and collaborating institutions (National Cancer Institute & The Lerner Research Institute) in the original study had been contaminated with XMRV and this had led to the high positive results in ME/CFS patients.

The big news in the saga this week is that the authors have now issued a partial retraction of their paper after some of the scientists involved reported evidence of contamination. However, the partial retraction only puts in doubt the information in one table and two diagrams, not the rest of the paper and not the final conclusion.

One of the WPI's lead researchers, Dr Vincent Lombardi, rather strangely said it was "participating" in the retraction but: "We want to make it very clear that we are continuing the important work of studying retroviruses in association with ME/CFS and other similarly complex illnesses.WPI's more recent retroviral work, although still in the early stages of discovery, continues to warrant additional investigations."

Despite Lombardi's assertions my personal belief is that this is the end of the road for XMRV as the cause of ME/CFS, even in a subset of patients. Much of the ME/CFS and general medical community are coming to the same conclusion and believe the WPI position is increasingly untenable. The BBC quote Dr Jonathan Stoye, virologist at the Medical Research Council National Institute of Medical Research in the UK, who said: "I don't think this partial retraction has any meaning, it would have been nice to have a complete rather than a partial retraction. They're saying the rest of the paper still stands, but that is becoming increasingly difficult for them to maintain."

It's easy to say now of course but my feeling all along (as an ME/CFS sufferer of 20 years) that it was doubtful that a single virus would turn out to have a causal relationship to ME/CFS. Over the past few decades there have been so many studies finding higher than normal rates of viral infections in patients, from Epstein-Barr (EBV) and Human Herpes Virus-6 to less ubiquitous enteroviruses, not to mention suggestions of fungal and bacterial overgrowth in the gut, that it seems the relationship between pathogens (and microbes in general) is much more complex than that of simple cause and effect.

Clearly there is dysfunction at the central level (brain and central nervous system) in ME/CFS that produces symptoms in multiple bodily systems. I would postulate that an initial trigger, which is often but not always a viral infection, disrupts homeostasis at the level of the brain and CNS and sets up viscious cycles of dysfunction that the body is often unable to recover from by itself - resulting in long-term chronic ME/CFS.

Indeed many scientists are now thinking along these lines and I reported on what I feel is a very important paper in a news article recently (read here). The authors put forward the hypothesis that "kindling" (or hyperactivity - in basic terms) of the limbic system in the brain is the process that drives the diseases process and that this can initially be triggered by viral infection, physical trauma, and other factors. This hypothesis elegantly explains how multiple causal factors lead to the same multi-system illness that we know as ME/CFS. I am putting my money firmly on this line of investigation baring most fruit!





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.