Anyone walking this earth and having the slightest interest in Chronic Fatigue Syndrome (CFS), Myalgia Encephalomyelitis (ME) and CFSME has heard the rumblings and is confused about the science battle over whether XMRV exists as any kind of cause of these illnesses.
First we had the great report from the Whittemore Peterson Institute (WPI) that XMRV had been linked with CFS. That’s good. That sounds like we’re moving forward.
Now we have 4 reports from the UK saying there is no link. That’s bad… or is that good? (Hint: it may just be bad science!)
It turns out that the conclusion of the question about the involvement of XMRV will probably have to wait awhile because the UK experiments were not done in the same fashion and, therefore, they don’t yield comparable results.
Check out Mart Schweitzer’s new blog post at Slightly Alive and then read this posting sent recently to the Co-Cure folks… .
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Permission to repost
Bad science fails to cast doubt on XMRV research
Absence of evidence is not evidence of absence – those speculating on the failed XMRV studies and claiming they cast doubt on the Science paper should understand the difference between exact replication studies and ‘quick and dirty’ approximation studies that did not replicate the exacting protocols employed by the Whittemore Peterson Institute, National Cancer Institute and Cleveland Clinic.
Information from the Science paper discloses the very strict criteria and additional tests used to characterise severely affected neuro-immune “CFS” patients, while the approximation studies used loose “chronic fatigue” criteria that were influenced by psychiatrists and fail to distinguish between neurologically impaired patients and those suffering chronic fatigue from a variety of causes.
These approximation studies only prove the failure to use precise scientific replication methodology and therefore have no bearing on the status of XMRV infection in “CFS” patients and the 4% positive population controls. The Science paper stands and ongoing scientific research is being conducted to replicate the findings and clarify the relationship between XMRV and human disease.
The Department of Health and Human Services is conducting studies on the prevalence of XMRV in the blood donor population and whether it is transmitted by blood transfusion, WPI is conducting a study on blood transfusion recipients, and the National Cancer Institute is studying models of mouse retroviruses that cause cancer and neurological disease, and potential anti-XMRV treatments. Furthermore Prof. Malcolm Hooper’s press release “Magical Medicine”, his formal complaint to the Minister for Science overseeing the MRC and letter to the Chairman of NICE, including a 442 page report of an extensive and fully referenced review of the literature on ME – which casts serious doubts about the psychogenic model of ‘CFS/ME’ filtered to the media – have significant medico-legal consequences.
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All of this debate is good, but we are left to decide what is the “best” information and what are the “real” results about XMRV’s involvement with CFS… for us. If you’re not a research scientist nor are you a doctor who specializes in CFS, ME or CFSME, then you’re wondering like me. When will good science and bad science meet? And when will the battle be over? All comments welcomed.
Stay tuned,
Cinda Crawford, host of the Health Matters Show
{ 4 comments… read them below or add one }
oerganix 03.02.10 at 1:16 pm
You say 4 studies from UK…..
I know of only 2 from UK and 3rd from Holland. The first and third studies came from the “it’s-all-in-your-head” school of thought, working diligently to ‘prove’ CFS/ME has no organic basis, despite 5000 studies that show one or more biological basis for this illness. The 2nd UK study is a mystery, but the fact that XMRV has been found in patients around the world, including UK and Europe, makes the finding of ZERO in these studies highly suspicious of simple FAILURE to find it, or the desire not to find it.
Mary Schweitzer 03.02.10 at 2:28 pm
Hi Cinda! One obvious clue as to the problems with the imitation studies is that they found NO cases of XMRV at all. In all of the U.S. studies – four years of prostate cancer studies and now the CFS study in “Science,” there was a consistent finding of 3-4% in the control group. It has been suggested that this is a geographic problem – but there have already been individuals in the UK who have gotten privately tested and found positive for XMRV. Given that this particular outbreak began 25 years ago, it’s not very likely that the virus would not have migrated to Europe by now. It has been found in Japan, though at lower levels. They can insult the editors of “Science” by insisting the article shouldn’t have been published at all – but there are still all those prostate cancer studies that found 3-4 percent in the normal group. There was one study that claimed not to find it at all with regard to prostate cancer patients in Germany, but I find it interesting it came out in concert with the CFS studies. Where were the Germans for the past four years?
Isn’t it strange that research about a new retrovirus does not engender opposition until it is associated with “chronic fatigue syndrome?”
Mary Schweitzer
Cinda Crawford 03.02.10 at 11:20 pm
Thanks Mary for responding. When you look at all this from a few feet back, it’s all very strange. But, in some ways, it does remind me of the beginning period of time of HIV/AIDS and how people were treated then (*since XMRV is also a retrovirus). As if getting ill makes the CFS or CFSME sufferer 1) somehow responsible and guilty; and 2) less than a worthy patient. The HIV/AIDS era was a time period that should engender a lot of shame among the many people who were in charge. Many of them acted shamefully… poorly at the very least. I wonder if all of this will turn out to be in any way similar?? Thanks for your comment. Please come back any time
Cinda
Cinda Crawford 03.02.10 at 11:24 pm
I misspoke a little. I should have said 4 “European” studies. Thanks for pointing out the origin of the 4th study. I do hope that a verifiable study is done soon. Now there’s more negative publicity than ever. Personally, I can’t say that it would be bad if XMRV didn’t have a role in CFS or CFSME, because that too would prove something. But disproving it with a bunch of garbage studies? Aw… come on! Somebody can do better than that. We need to know one way or the other. Thanks for your great comment- come back to visit soon! Cinda