Bob
Senior Member
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The issue is how this 'cynicism' is one sided- mostly about the WPI, and Judy Mikovits. Also about how patients are being portrayed. Also about all the 'negatives' with very little concern for the huge problems in the 'science' of those studies. And about how 'CFS' is merely a side issue (an unimportant one) in the subject of XMRV. This is a snapshot of how people claiming to be 'scientific' are nevertheless engaging in trivialisation and misrepresentation of CFS sufferers and the likes of Mikovits.
I'm not saying we should engage with the BSers: far from it. But we need to be aware of how the common trend of trivialisation of the concerns of 'CFS'ers, and the acceptance of travesties of science can happen easily, in people not even 'interested' (!) . i don't think people can afford to be 'optimistic' yet, if at all. We need to be thinking how are we going to counter all this? Not 'everything will be fine': while the repeated misrepresentations of the 'science', and attacks on CFS advocates and their concerns, and ignoring of the highly relevant rational analysis of the 'science' which tends to only happen on informal patient forums, but will be ignored in the popular press and never published in academic journals, is relentless.
Bob, as a relatively recent? PR forum member, you may not be aware of the BSers treatment of people on this forum in the recent past, or of Bad Sciencers' blind spots of 'skepticism' when it comes to the mystical power of the mind over the body (woooooo)... the comments on that forum are relevant to previous behaviour and attitudes towards CFSers.
Hi Angela,
I agree with much of what you say...
I think I am always coming from a place of ME patients being the underdog anyway... None of what you describe is new to us... I kind of take it for granted that we are ignored and made fun of... We've always been ignored and made fun of... But, I think, far less so now than in the past... things have been changing, from my perspective.
So can we ignore the rattlings of an obscure forum without prejudicing our cause? I think so, but maybe you don't... it's OK if we disagree on that.
If it wasn't for WPI and Judy Mikovits then we wouldn't know anything about XMRV... The forums that you talk about didn't stop the WPI, and they haven't stopped the current XMRV research, although I know there are forces that would like to.
Now, obviously we don't want the new research to be buried, but I honestly believe we are in a far more powerful position now than we ever have before. XMRV is a fact... it wouldn't be easy to bury it because so many researchers are already studying it... the XMRV research seems to have a momentum of its own. The WPI XMRV research is so strong that I just don't see how it can be buried. Certain forces are possibly attempting to bury it at the moment but we don't know that for sure, and I don't think that they will be successful on this occasion. But obviously that's not a reason to sit back feel sanguine. I think that the most the CDC can do in this case is to stall for time... and remember that Reeves isn't part of it any more, so that's another thing going in our favour.
Obviously i'm very concerned that the NIH/FDA paper gets published soon though, as this would really be a game changer.
Bob