The Undiagnosed – chronic fatigue syndrome and the search for a reason

Credit: Wellcome Library, London The four elements, four qualities, four humours, four seasons, and four ages of man. Airbrush by Lois Hague, 1991.

I’ve written before about chronic fatigue syndrome, also known as M.E. It’s a miserable illness, causing untold suffering to those who have it or care for someone who does. No-one knows exactly why it happens, which means treatments are largely stabs in the dark to see, empirically, what works.

So naturally, there was much excitement a couple of years ago when a group of researchers reported that they’d discovered that a larger-than-expected proportion of people with CFS were infected with a newly-identified form of virus, which they called xenotropic murine leukaemia virus-related virus (XMRV). Here, at last, was a cause people could understand, and a starting point for research. Anti-viral medicines could be tried; people with CFS could be tested for the virus.

Then it all started to unravel. Other researchers were unable to find XMRV in chronic fatigue syndrome patients. The DNA of the virus was unusually similar in different people. Some clever detective work proposed that the most likely cause for the findings was contamination in the laboratory, arising from work on a mouse cell line during prostate cancer research. Science, the journal that published the original study, asked the authors to retract it last year. A couple of weeks ago, it was partly retracted after some of the authors admitted that their samples were, indeed, contaminated. At the same time, Science published a new paper demonstrating that tests for XMRV were, at best, unreliable.

I reported for the BMJ on the retraction and the latest research. It seems to me that the case for  XMRV as a cause of chronic  fatigue syndrome is closed. Two main thoughts occur. Firstly, the whole affair demonstrates how science is inherently self-correcting. The refusal of scientists to take anyone else’s word for it (in the motto of the Royal Society, Nullius in Verba) means experiments have to be replicable, and suspicion is immediately ignited when no-one but the original researchers can show their results. It’s why scientific research papers have to show their methodology; not just so we can look for flaws in the study, but so other scientists can see if they get the same results.

The more philosophical point is around the eagerness with which the XMRV explanation was taken up. Of course people wanted a cure – but even more, people wanted an explanation that made sense of why this dreadful thing had happened to them. A couple of hundred years ago, people might have blamed chronic fatigue symptoms on someone having a delicate constitution, or ‘nerves’. Four hundred years ago, it might have been blamed on an imbalance of the humours, or a misalignment of the heavens. Those explanations sound ridiculous to us today, and our explanations would sound ridiculous to people then.

Illness has always been rooted in the culture and society that surrounds it. After a century when the triumph of antibiotics and antivirals took the terror away from many infectious diseases, small wonder we look to microbiology to explain a disease like chronic fatigue syndrome. It makes sense; we know much illness is caused by infectious agents and we’ve seen other illness cured by eradicating those agents. Unfortunately, if we’re wrong, then researchers will have spent an awful lot of time looking in the wrong place for the answer.

It reminds me of Joshua Ferris’ novel The Unnamed, where a New York lawyer and his family struggle to put a label on his sudden mysterious compulsions to walk for miles, in a direction seemingly not of his own choosing, through any sort of weather, much to the detriment of his health, personal safety and career. So ashamed is he of this undiagnosed compulsion, he prefers to lie to his colleagues that his wife has cancer, to explain his sudden disappearances. He submits himself to CT scans and experiments, quacks and New Age gurus, any sort of indignity that might allow him to understand and control what is happening.

Even now, plenty of CFS patients are still clinging to the hope that XMRV or a similar virus really will turn out to be the cause of their suffering. Some talk of conspiracies by mainstream medicine, to suppress or discredit the initial research. It seems we can bear a lot in life, if we know what to call it. Even if that name is as long as xenotropic murine leukaemia virus-related virus – and even if the name turns out to be wrong.

UPDATE: 28 December 2011: The journal Science has fully retracted the XMRV article, citing numerous concerns. You can see the retraction here.

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One comment

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