Sarah Lawry said...:
You and your daughter have been extremely fortunate not to have had to deal with the politics of this illness as well as the illness itself.
Here in the UK (and surely the US and elsewhere) it seems that unless the illness is disentangled from the politics, the ME community will never get the treatment that you are already receiving - we will continue to endure the neglect and isolation, in poverty. The political will is needed to change policy.
Without it, no amount of discovery and progress in treatment will reach us and we will remain in the medical wilderness. ME is a heavily politicised illness.
This is not a result of sufferers' behaviour or lack of unity, rather the carefully designed policy advice of Wessely and others to marginalise sufferers and the illness itself.
Also, what effect do you think being told that the illness is all in one's head has had on the community? Or that a change in one's behaviour is where the solution lies? I can tell you, it has damaged the community immeasurably - physically and psychologically, and that's maybe what you are observing now.
This is the daily politics of ME with which many sufferers have to live.
The wonderful work of Lombardi et al will not stop us from being regarded as "psychotic malingerers" without addressing the politics. Politics trumps science - sad but true.
Maybe scientists ought to join sufferers in the political arena - we're struggling to bring about the changes necessary for Government to acknowledge the existence of XMRV, nevermind testing, funds for research or treatment.
Warm regards, Sarah Lawry, the probable "leper".