Angela Kennedy
Senior Member
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- Essex, UK
Like JPV, I'm not particularly optimistic about XMRV. I'm trying to keep an open mind, but I do feel it's rather unlikely that the cause of ME will suddenly be found. After all, we still don't know the cause of many other neuro- immune and auto-immune illnesses, for example, MS, rheumatoid arthritis, motor neurone disease, despite years of research and lots of money being invested.
I think the best that can be hoped for is that a) some ME sufferers will have XMRV as part of their illness and that treating this helps these people, just as treating other viruses has helped some, and/or b) the interest in XMRV will give researchers the impetus to find out more about the disease process so that although the cause may not be clear, treatments will be identified so that the illness can be better managed.
It's difficult to voice that opinion here as so many people have so much hope that XMRV will be the answer, and hope is such a positive thing.
We also seem to be in a similar situation as Lyme disease has been in for decades, with disagreements about the validity of tests. And with Lyme, even where testing seems conclusive there seems to be no one clearly effective treatment. So I worry that this may happen here too, even when the testing issue is resolved.
But I hope I'm completely wrong about all this
Jenny
Hi Jenny,
Sadly, I think you are completely right and I agree wholeheartedly. The Lyme issue is somewhat of a precedent here. I'd add to your 'best we can hope for' wishlist the damaging effects of an illogical psychiatric paradigm of difficult to explain somatic illnesses might hopefully be mitigated, though it looks like that won't happen without a fight. As usual, the 'science' is scrappy, and not just methodologically!
Also - maybe the cohort problem which has dogged the research for years and years will eventually be recognised. Though presently there is something of an 'Emperor's new clothes' aura in the scientific community about it. It's the little peasant boy advocates who keep bringing it up I note, and if ever there was a "The king is in the altogether" moment, this is it!