PERMISSION TO REPOST
Campaigning for Research into Myalgic Encephalomyelitis RiME
(Proposed APPG) Services Inquiry – May Day
The overwhelming feedback RiME gets re. ‘CFS/ME’ services in England is negative, with many saying that effective treatment (that is treatment that would lead to recovery or substantial improvement) will only come through biomedical research.
Worryingly, the Inquiry will be led by Des Turner MP APPG Chair in cahoots with the APPG’s Secretariat – AfME and the MEA. Each of these parties appears biased toward the clinics; that is, they present too rosy a picture. There are concerns, therefore, that somehow they might manufacture a favourable report. If they did, then the outcome would surely weaken the case for publicly funded biomedical research. Ministers and MPs could merely reply to letters on the latter saying that ME patients (or a healthy percentage) are already being successfully treated…
Is this where the whole thing is heading? And where it was always meant to end?
What can you do?
1. If it’s possible get to the next APPG Meeting and voice your concerns (if you can’t, have you a relative or friend who could?). Also, raise the issue of biomedical research: what the APPG is or rather not doing about it.
2. Generally get more involved in terms of challenging the status quo: writing letters (please send us copies); posting on the internet…
3. If you have concerns re. the services in your area, send them to us. We are particularly interested, currently, in hearing from people in Yorkshire + Sussex. RiME intends over the winter to add to the information in the letters and clinics folders on its website.
If more people don’t speak up now and more forcibly, it will continue to be ‘same old, same old… ‘ as far as ME patients are concerned.
PS I met someone at the last APPG meeting who I think said they were connected to the Leeds + Kirklees Group; if they are reading this, please get in touch.