A thread on what people with ME/CFS need in the way of service

Jonathan Edwards said:
I have now sent the draft suggestions to the DHSC people involved, in response to an email. Unfortunately, DHSC do not want me to share their slides with the patient community. They say things are likely to change. Hopefully some things will.
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Thank you for sending the suggestions and asking for the slides. The lack of transparency is annoying - our lives, government money. It's hard to see a good justification for the secrecy.

Is there any indication of when the 'something that is different' information will be available, and to who?
 
Sorry I can't follow all this thread and I don't know whether these things have been mentioned or whether they apply to the conversation.

Assessment appointments to be carried out with a bed a available for the patient to lie down.

Check all other illnesses have been ruled out by the GP.

After 3 months and the patient is still very ill and likely to be ME/CFS, practical and realistic help with income support benefits should be signed off for 2 yearly review because there's no quick fix recovery with ME/CFS. This will release patient from the added stress of 3 monthly reviews.

Regular appointments should be limited if patient is too sick.
 
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