Emily I have to post here today because I have just witnessed the most blatant attempts to discredit WPI and their XMRV research work. In fact, the whole existence of the WPI was questioned.
I went to see a British doctor who is actively involved in areas of CFS research in the UK talk about "The Future of CFS/ME Research".
She spent 15 MINUTES on the subject of the WPI in which she said:
1. XMRV figures were exaggerated. To demonstrate this she showed original report with 67% XMRV positive statistic. Then she showed the statement where 95% was quoted and said WPI had made it up. (I did correct this later on, explaining that more samples had been tested).
2. The WPI "doesn't exist" in that the picture of the building is fake. The WPI are asking people to donate money for something that doesn't exist. (I felt it was also implied that the WPI were being deceptive around this issue.)
3. That the WPI had a vested interest in publicising their study in a big way because they then went on to charge over $600 for tests for XMRV. (no mention of Wessely and his famous XMRV test!)
4. That anti retroviral drugs should be used (she smirked after saying this, as it to say "what a ridiculous idea") - she implied that the WPI had said that they should be used now to treat everyone with ME.
5. Claimed that the 2nd UK study and Netherlands study used the correct methods.
6. Claimed that the UK centres were "ideal to use for research" because it meant researchers had such brilliant access to patients.
7. That the WPI's cohort was flawed (no really!!) because they were all part of the Lake Tahoe outbreak group so "probably all had an illness caused by a virus" (er don't we mostly all have this?)
8. That XMRV was interesting but prob wasn't relevant to the UK (didn't get the chance to inform her that WPI are testing some UK people's blood for free - I had my hand up but I'd clearly already annoyed her too much)
I also feel it was implied that the WPI study was rushed. That they should have waited before making such an exaggerated claim.
Please bear in mind - this is all my take on the talk. Maybe I have it all wrong.
Oh and I should also mention that when I asked the chairman of the ME group who were holding the meeting if he could advertise the Invest in ME conference (where WPI are presenting), he refused and would not give me a reason why. Considering the talk I attended was called "The Future of Research for CFS/ME", I could not see why advertising a conference on the same topic would be a problem.
It's a rather blatant case of censorship. By not informing people about Invest in ME, patients don't have access to new research news. Not everyone has the web, not everyone knows all the information. If the ME support groups don't provide, what hope do we have. How can these people know what is going on?
The saddest thing is, everyone seemed to love the talk. They believed her when she said the MRC are wonderful and that lots of research is soon going to be done. They believed that XMRV wasn't relevant to them.
The weird thing is I got the impression she was a good doctor who really really cares about her patients. I felt her comments about the WPI were unprofessional and unecessary and thought the WPI should know about how their work is being discredited. I assume she will go on to do that talk elsewhere and spread her views further. And she does talk a lot of sense (on other issues) so why wouldn't they believe her.
I dispair of this country. Today made me so sad. I have never felt stress like it! Will the WPI see this message or should I email them too?
about 5 months ago
Sorry - just read point 4. which doesn't make a lot of sense. What I meant was she implied that WPI were suggesting that anti retroviral drugs should be used right now to treat ME, rather than what they actually said which (I think!) is that the drugs were a possibility for future treatment.