Is you is or is you ain't?
| 2 June, 2011 | Richard P. Grant |
5
|
|
Imagine there was a disease, with often devastating consequences, the causative agent of which remains elusive. Then, a paper is published identifying such a potential virus, causing great rejoicing especially among patient advocacy groups, who have struggled to convince medics that the disease is a real one–that is, not only psychosomatic. They have hope now for a cure, or at least a test.
And yes, a test comes on the market, becoming available with some might say with indecent haste. Some claim that sufferers of the disease have been prevented from donating blood because of the risk of transmitting the virus. Questions about Koch’s Postulates go unanswered.
But quite quickly, questions are raised. Other labs are unable to reproduce them, failing to find the virus in supposedly infected blood samples. Vested interests–the authors of the original study, the advocacy groups, the manufacturers of the test kit–strongly defend the findings.
Yes, we’re talking about myalgic encephalomyelitis (ME), or chronic fatigue syndrome. The original paper in Science, “Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients with Chronic Fatigue Syndrome“10.1126/science.1179052 was evaluated, and dissented, at F1000. Now it’s the subject of an Editorial Expression of Concern, issued after the authors, in the face of continued criticism and scepticism, failed to retract the paper themselves.
Whatever your view on the science (and for my part, the whole XMRV saga seems too convenient for such a complex syndrome), there are some important issues remaining. Will the ban on blood donation be lifted? Will medics go back to not believing it’s a real condition? Is the suffering of those afflicted with ME now worse than it was before October 2009? It seems cruel to offer support for patients and advocacy groups trying to convince recalcitrant medics that this is a real disease, and then to snatch that support away, but what else can be done?
Many patients, I think, had pinned their hopes of being taken seriously on XMRV as the causative agent. But just because the Science paper is dodgy doesn’t mean these people don’t have a real problem, does it? The only real losers should be those who were selling the test kit.
[Note: we’re having a bit of technical trouble which means I can’t make the evaluations & discussion of the Science paper free to view. I’ll update when I can.]
[Update: now fixed. See https://f1000.com/1166366?key=8bxfk91wjw49hz4]
|
|
previous post
This would be like the vaccine controversy. The ‘lack’ of a link to autism from the vaccines is merely a cover for the fact the problems from vaccines are renamed to encephalopathy and paid out ? There are things which MIMIC a virus and the fact the researchers ‘discovered’ a ‘link’ TO a ‘certain virus’ need not MEAN all OTHER scientists are BOUND to try to disprove this link TO this certain virus. Their time could easily be DIVIDED to discovering HOW and WHY these researchers HAVE hypothesised this and then they might serendipiously find a solution. Stumbling about as these scientists usually do. Imho
“…then they might serendipiously find a solution. Stumbling about as these scientists usually do”.
Really? That’s what we do? You don’t know a lot about science then Tom, do you? “There are things which mimic a virus” – like what, Tom? What we have seen with XMRV is that some folk made a claim which was contentious; others investigated it – and found it to be spurious. No flailing about; no serendipity – and no stumbling.
The fact is that XMRV is probably a laboratory recombinant, which got into cell lines by accident, and which cannot generally be found, at least, by people who don’t have a stake in the outcome.
Science moves by fits and starts, sometimes, and by claim and refutation as well: investing emotionally in an outcome that seems to have been pretty much disproved seems unwise.
That should obviously be “serendipitously” – although as a lover of the pun as an art form, I quite like “serendipiously”. I can see it now: New Oxford Dictionary; Adv: to self-importantly find something by luck.
*laugh*
Don’t push it, Ed…
I think that the Science paper didn’t quite stablish a correlation between XMRV and CFS in the first place. As a scientist I am very surprised that this paper was published in just a renowned journal since there were only a few PCRs behind the conclusions. As the daughter of a patient with XMRV, I am even more annoyed about this work having been published. I can only say that my mother, who doesn’t understand Englisht at all, learnt about the Science paper almost the same day that it was published and she phoned me to ask me to print it and read it. When I told her what I thought about the paper and what I had read in many websites/blogs about the results she got very upset and we had quite an argument. This can only give you a glimpse of the disappointment that she had, when she would not even believe what her daughter (who holds a PhD – as she proudly tells everybody all the time) was saying. As far as I know she has not heard anything about the papers that got negative results about XMRV and MCS, or about the Expression of Concern of the Science Editorial.