That is my worry too, Min. If the patients in the study are chosen by the oxford criteria or recruited from the clinics then we are just going to get lots of negative studies that set us back years, possibly for ever.
I was bitterly disappointed by the MEAs response to the Alter paper.
Every statement is carefully chosen and given a slant away from MLVs being important in ME.
The problems with the negative studies are well known, Shepherd should be shouting them from the roof tops. The Kerr study excepted, all the rest came from groups invested in the theory that ME/CFS is a somatisation disorder. As Dr Vernon of the CAA said of the CDC study, you would think they were trying not to find XMRV.
As a single example of what I mean
They also state (p6), as has been pointed out in previous MEA summaries on XMRV, that a high frequency of MLV-related viruses (or XMRV) in ME/CFS patients could reflect an increased susceptibility to viral infections due to the underlying immune dysfunction found in ME/CFS rather than a primary disease causing role in the pathogenesis of ME/CFS.
This may be true, though it rather implies that we have an underlying immune problem, itself proof that we do not have a somatisation disorder so why is the MEA not shouting about that and demanding biomedical research and treatments instead of all the money going to CBT and GET therapies which even Wessely agrees does not help over a third of patients?
Then he continues
In other words the retrovirus could just be there as a 'harmless passenger'.
No, it does not say that at all, it is not "in other words". Just because the virus is not
causative, does not mean it is
harmless. People often get the pneumonia bug when they have cancer, pneumonia does not cause their cancer but it can still kill.
In fact, MLVs are known and accepted to cause cancers, immune problems and neurological problems in other mammals. Why should we be immune?
Every time the MEA puts out a calming, soothing, let's not get excited statement I wonder
why. They do some good things. I
like the MEA, I was a member for a long time whereas I soon left Action for ME even before they started getting government grants and towing the party line. That's why they disappoint me so much.
I don't think it is a big conspiracy so much. It was about 1986 I joined the MEA and the local group attached to it. It was god to meet people and the organiser was a really nice man but I remember asking him why the severity of the disease was being played down so much (and this was before I knew how bad it could get, before Lynn and Sophia). He said that newly diagnosed people want hope and it was not right to tell them how bad it could get.
To put that into perspective, at the time it was policy not to tell people they had cancer and it was another ten years before neurologists were persuaded that people with MS should be told what they had. Accepted thinking was that people would "give up" if they knew they had a serious illness.
That paternalistic view has, I believe, become ingrained in the MEA. Everything must be toned down and explained away, lest anyone worry or get stressed so no need to bother our heads about nasty retroviruses until they are
proved to be dangerous.
Of course, the down side is no one is going to do any work on retroviruses, or anything else, unless they could be dangerous and this attitude has allowed the authorities to ignore us and leave us to rot.
I aloes suspect that much of the membership is now made up of people who have idiopathic fatigue rather than ME so they might simply feel a duty to represent them.
Mithriel
