Action for ME Symposium on Severe ME : alarm bells !

I have just been informed that Action for ME are hosting a symposium on Severe ME, : Friday 14  November.

Immediately alarm bells clanged left, right and centre : I was right !!

Two of the speakers have published an article (http://bmjopen.bmj.com/content/4/6/e005083.full) , citing references to "recovery" from "Severe ME" through CBT, GET and PACING.

This is outrageous !!

There is no recovery possible in Severe ME, without investigating and treating the underlying pathology .

Severe ME is the last bastion, in the psyche's increasingly frantic and outrageous attempts, over decades, to bury the disease under CFS.

How much longer are we going to tolerate the blatant misrepresentation of ME, by the very ones who are supposed to be representing our interests ?

Comments

  1. Yes, indeed, Greg. This is disastrous. I wonder if we will ever find out the reason(s) why M.E. patients are discriminated against so violently?

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  2. I'm afraid Greg you are making the classic mistake of shooting the messenger because you don't like the message. All the authors are doing is REPORTING on what does or does not happen to severe MEers in the NHS. As such, they are highlighting the lack of provision. They are NOT commenting on treatments used but simply noting what they were told. I can't find the word "recovery" anywhere in their paper. And, if it were, it is not what THEY are saying. I must admit I find it odd that CBT and GET are mentioned as appropriate for the severely affected. But again, they are simply reporting on what they found. The keynote speaker is Professor Hugh Perry, head of the MRC Neurosciences board. If that isn't a commitment to finding the underlying pathology I don't know what is. This is a genuine attempt to do something for the severely affected and neglected which you should be supporting.

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