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

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 more services, unless those services are clearly biomedically orientated plus any underlying psychosocial attitude or approach is removed. This really must be stressed!
3. Concerning Benefits, it must be emphasised that no one should be harmed, the ME Charities have to insist that people with ME, a neurological disease, especially the most severely affected, should not have to undergo any assessment that poses a serious threat of deterioration or harm to their health.
4. The Social Care section is poor. There needs to be additional emphasis on how care is provided, on the quality of training and how critical it is to understand the high risk of harm, pain, distress and deterioration from inadequate or inappropriate carer input, especially for the most severely affected who are harmed by even slight errors .
5. Finally we have to ask who is going do the training that is recommended? Who really has the knowledge, especially of Severe ME?
Greg & Linda Crowhurst

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