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A RESPONSE TO BRIEFING FOR ‘MYALGIC ENCEPHALOMYELITIS: TREATMENT AND RESEARCH’ WESTMINSTER HALL, JUNE 21ST 2018

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Stonebird 
Although very good there are some important omissions in this Briefing Document that we think would consolidate it further: 1. Of particular importance to people with Severe ME is to mention: a.The failure of the FINE Trial
b. The inappropriate current NICE recommendation for Graded Activity Management for the severely affected (elements of CBT & GET) We feel the FINE trial failure is key to protecting people with Severe ME. Although PACE is constantly flagged up, FINE unfortunately is rarely mentioned, yet it is proof that the psychosocial approach does not work for people with Severe ME. 2. We are greatly concerned about the danger of increasing what is on offer right here, right now, without a corresponding, fundamental sea-change of attitude within the NHS. There is a huge need in this document to stress BOTH the creation of a new and separate biomedical pathway alongside and an overt break with the psychosocial Fatigue clinic ethos. It is not enough just to ask for …

This is Severe ME

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My new book is about how to care for someone this ill. Notice how the word "Fatigue" does not occur in this devastating list of symptoms. https://www.youtube.com/watch?v=bCU5TI_m3K4 "CARING FOR ME", out very soon.