Wednesday, February 9, 2011

A carefully designed policy to marginalise a VERY disabling illness

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".


nmj said...

Sarah, You have a knack of articulating just what I am thinking! It chimes almost exactly with what I have been saying elsewhere.

... I have been following a thread over at CFS Central, no one can question Mindy Keitel's support of PWME, or her articulacy, but she is arguing that our tactics *have* to change, we are getting nowhere, the anti-CBT stuff has been done to death and we now must change the way we fight, taking ACT UP, the HIV/AIDS patients 'rising up', as our model. I am not so sure and have said as much. In UK, we must KEEP fighting Wessely - targeting advertisers in science magazines that publish dodgy ME articles is not a surefire revolution.

Changing tactics here:

Critiques of CBT 'done to death' here (this statement appears in comments).

We are not fighting the right way? It irks & disappoints me that we - the patients - are almost being blamed for things not changing. I commented a few times in top thread though my last comment has not yet been moderated.

nmj said...

Oops, sorry - I got Mindy's last name wrong before it is Kitei, not Keitel. Anyway she did not publish my last comment, I guess because I asked the question, a valid one I think, what is the point trying to boycott mags like Retrovirology via boycotting the advertisers when the people that subscribe to these magazines are doctors and scientists not patients. We can threaten them as much as we like but we are not their bread and butter. Maybe these kind of campaigns can work *alongside* trying to fight the Wessely stranglehold, but certainly not *instead of* as she suggests. I truly think unless you live in the UK you cannot comprehend the way that Wessely's toxic influence ladders down to NICE/MRC/DWP/NHS. Fighting Retrovirology ain't goin to change that. PWME need to keep focusing on the true villains, the Wesselyites (get him off the Science Media Centre panel for a start!), the apathetic, uninformed politicians - science magazines that carpetbomb us with negative XMRV studies - are more the obnoxious sidekicks.


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