RiME Notice: 15/03/10
RiME Campaigning for Research into Myalgic Encephalomyelitis www.rime.me.uk
I wanted to let supporters know that I got Shingles 3-4 weeks ago. Unpleasant and I have to rest.
Frustrating… Much going on and much to do.
I had intended to attend the final meeting of the APPG on ME March 10 and make some points about the deeply flawed draft Report on the Inquiry into NHS Service Provision for ME/CFS (the one handed out at the previous meeting), notably:
1. What is this Inquiry really about? The description of ‘ME/CFS’ on Page 2 of the draft Report mentioned above is not about the neurological illness described by ICD 10 G93.3 or the Canadian Criteria.
2. That significant evidence submitted to the Inquiry (over 50 copies were sent to RiME) is not accurately reflected in the draft Report. Time and again ME parties say (A) the clinics set up following the CMO Report are not about the neurological illness Myalgic Encephalomyelitis (B) why is the APPG on ME (it recognises ICD G93.3 in its Code of Conduct) investigating these clinics?
That it is not reinforces the view that the APPG on ME is not for ME patients but about them; and that it is primarily about promoting Government policy (not about G93.3 ME).
I haven’t yet been able to read the Report handed out on March 10 but if it is anything like the last it is totally unacceptable and will need challenging.
If you’re not happy with it, let the politicians know – Dr Des Turner MP, Lady Mar, your own MP… (please send us copies).
If there are a few who still think the likes of Dr Turner and Lady Mar are, overall, helping ME patients – two words: Prove it.
Good Wishes, Paul