Cheap and simple research proposals
I too am pleased with the way this discussion has progressed from an unpromising start. I'm glad we didn't close the thread as some people asked earlier on...
I've been too busy to post for the last few days, but I'm going to have a go at making a few quick points this evening, starting by answering this question:
Mark said he had ideas for small studies. I'd like to hear those ideas. I think PR could fund a small study with an article on the front page like for Bateman, or try to get something funded. We could fund testing at WPI for a small group who were found negative by other means, or some other tests on a few non-positive people. Something to answer the questions of people here. Send some of Chia's biopsies for testing.
I presume this refers to me, since I have made some suggestions, and alluded to those ideas, several times since October. They are very simple and obvious ideas. They are what I felt ought to have happened in a rational, caring and respectful system, and I think the fact none of these things have happened is a damning indictment of the world of modern medical research (for which I have no respect left after what I've witnessed over the last 9 months).
ME/CFS doctors, governments and researchers around the world could send samples of their patients to the WPI to be tested. I know some in the US have done this, but there's a very simple way to test whether the WPI's methods are accurate. A bunch of agencies around the world send
coded blood samples to the WPI. Each agency codes an equal number of samples from their ME patients and from healthy controls. Those codes are all stored in some secure system such that WPI has no way of knowing which samples are which. WPI tests the samples for XMRV and releases those results. The codes are then revealed, and the results become clear.
The participating agencies could be anybody, and there should be a few of them of course. Each sends about 10 CFS samples and 10 control samples, all collected in accordance with WPI's instructions.
It's as simple as this: if the WPI could tell you - blind - which of the blood samples came from people with CFS and which came from healthy controls, then no reasonable person could then dispute that, at the very least, their test is the first ever diagnostic test for (at least a subset of) CFS. Then we could all stop messing about and focus properly on the WPI findings.
With the 98% vs 4% prevalence - or even with the more modest 67% vs 4% - then if those figures are accurate, no more than about 20 samples would be required with this method to prove the validity of the test beyond all reasonable doubt. And it could be done, start to finish, in a few months - if the threat of XMRV was considered to be a serious one.
Total cost of such a study should be around $8000 per 20 tests, plus the cost of drawing the blood, coding the samples, organising the whole thing etc - I can't really see why all this should cost much.
The other, similar thing that ought to have also happened within a couple of months of the Science publication, is a variation of the above theme. 10 samples each from patients with MS, atypical MS, autism, atypical autism, GWI, IBS, and other ideopathic immune conditions...10 samples from each should be sent to the WPI in the same way described above.
This would immediately give a very quick estimate of what the XMRV prevalence is in a variety of conditions. Whatever the results showed, they would yield an enormous amount of clues as to what XMRV does and who it infects.
The above plan is very simple-minded, I know. What has happened instead is that a bunch of researchers around the world have tried their own methods for detecting XMRV, and unfortunately none of those other methods seem to work (with the exception of the most recent German study) meaning that in the last 9 months we seem to have learned absolutely nothing.
Perhaps a scientist or medical researcher can tell me why my simple-minded plan - which seems watertight to me and would answer all the important questions we need answering, within a month or two - can't be done in the modern world?
The only issue I can see is trust. If Simon Wessely sent his samples in, many or most of us wouldn't trust him and his team not to lie about the coding, and we wouldn't believe that his patient cohort was relevant anyway. If a trusted ME doctor sent their samples and the results confirmed WPI, doubtless the psych lobby would be suspicious that somebody had tipped off the WPI with the codes. So this is the area where some thought would be required - but doubtless a system could be devised with some kind of observers from both sides supervising the blood draws and the coding process.
So scientists: is there any future for this proposal? If the medical research world can't get its act together to do something like this, perhaps a patient group - or a patient advocacy organisation - could organise such a study? I'd really love to hear whether anybody can explain why this sort of thing hasn't happened and presumably doesn't normally happen. Especially if they could provide an ethical justification...
