All right, I've been in there and posted my opinion, which is now "awaiting moderation." I'm personally a fan of the SBM blog, am not a fan of alt-med or vaccine scaremongering, so my criticisms are hopefully constructive - if pointed. But they may not like what I had to say about Harriet Hall. She's not one of their higher-caliber posters, let's just say that much.
Here's what I posted.
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“The prostate studies may be marginally relevant, but my point was that they do not directly support the claim of a link between XMRV and CFS.”
The prostate studies, specifically the Kim et. al paper showing the integration site in prostate cancer:
http://jvi.asm.org/cgi/content/abstract/82/20/9964
are directly relevant to the hypothesis proposed in Hue et. al.: “We propose that XMRV might not be a genuine human pathogen.” That radical and unproven hypothesis, if true, would serve to discredit *all* the previous work on XMRV in humans, regardless of the condition being studied.
It is interesting, from a political viewpoint, to note how the above-quoted hypothesis put forth in the actual Hue paper became, in the Wellcome Trust’s press release, (1) confidently presented as a proven fact rather than a tentative possibility and (2) ENTIRELY about discrediting proposed links between chronic fatigue syndrome and XMRV. (See if you can find the one reference to prostate cancer in this press release, compared to the way chronic fatigue syndrome is discussed.)
http://www.sanger.ac.uk/about/press/2010/101220.html
Regardless of how the science proves out in the end, this kind of misrepresentation of their own work by researchers strikes me as highly unethical and irresponsible. It’s unfortunate that claims made in press releases are not subject to peer review – or, all too often, to critical scrutiny by knowledgeable journalists.
As for whether patients should be taking anti-retrovirals at this point, I’m not in favor of it myself: but only because properly controlled clinical studies are not yet available. The notion that such trials should be started sooner rather than later is not some fringey crazy-patient notion that needs all our quack-busting energy directed at it: it was proposed in the commentary by Valerie Courgnauda, Jean-Luc Battinia, Marc Sitbona, and Andrew L. Mason that accompanied the Lo et. al. paper in PNAS:
http://www.pnas.org/content/107/36/15666.full?sid=86ca55c6-30bc-42a2-adb7-3976237d91e6
“As we currently lack postulates to prove a causal association with a prevalent agent and a chronic disease with genetic predisposition, it would also be appropriate to conduct interventional studies. Indeed, the Helicobacter pylori hypothesis of peptic ulcer disease was only accepted after Barry Marshall showed that bacterial eradication with antibiotics cured peptic ulcer disease (21). Studies to gain proof of principle have been performed with antivirals in other chronic, idiopathic diseases linked to retroviral infection, such as primary biliary cirrhosis associated with mouse mammary tumor virus, another possible murine zoonosis (22). Trials using a combination of reverse transcriptase inhibitors led to significant improvements in clinical, histological, and biochemical outcomes in these patients, albeit with some evidence of viral resistance to therapy (23). Such studies are now feasible for CFS, because reverse-transcriptase inhibitors, such as tenofovir and emtracitabine, and the integrase inhibitor raltegravir can inhibit XMRV (24).
“The caveats for conducting clinical trials in patients with CFS and MLV infection are that the potential benefits of treatment should outweigh the risks; also, studies should be conducted as randomized controlled trials with meaningful and feasible endpoints using robust therapies. At this juncture, studies to establish proof of principle are justified to determine whether safe antiviral regimens can impact on CFS and to determine whether xenotropic or polytropic MLV is causally associated with this debilitating disease.”
I personally don’t feel that patients doing their own one-off antiretroviral treatments is such a hot idea, but mainly because there’s no useful knowledge to be gained thereby as it would be happening outside the context of properly controlled trials. There is much pearl-clutching concern being expressed in various places about the horrors of antiretroviral drugs and how CFS patients don’t have a full understanding of how serious these drugs are. I am not terribly moved by the overstatement of these concerns, and not fully convinced they are motivated only by a concern for patients’ well-being.
In the first place, antiretroviral regimes for HIV have been developed to a point of being fairly well-tolerated, thanks to the many years of diligent research and funding that have gone into them: a level of research and funding of which CFS treatments have never seen the barest fraction. In the second place, I do believe there is a widespread misunderstanding of the severity and disease burden of chronic fatigue syndrome. It might be unthinkable to take serious anti-retroviral drugs for a condition that only consisted of some “fatigue,” but many investigators have compared the level of illness and debility suffered by CFS patients to that suffered by end-stage AIDS patients in the last two months of life, heart failure patients, and those currently undergoing chemotherapy. In the US., the disease truly has a misleading and belittling name, that only hints at the larger misconceptions about its seriousness.
As a long-time reader of this blog, I am deeply disappointed at the low caliber of the discussion and analysis being provided by Harriet Hall. Providing retorts along the lines of “Well there are more studies showing X than there are showing Y, so X is more likely,” without any seeming insight into the methodological problems being encountered at the limits of detection in the current science, is somewhat lower than the standard I expect from this blog. Readers who really want an informed opinion about what issues the new “contamination” studies may or may not raise about past XMRV work would be well-advised to consult Vincent Racaniello’s virology.ws blog instead. His reputation as a retrovirologist is impeccable, and he combines a real ability to evaluate the science with what seems to be genuine compassion for the pllght of patients. He demonstrates that such compassion is not incompatible with evaluating the science knowledgeably, fairly and objectively.
