Discussion in 'General ME/CFS Discussion' started by charles shepherd, Aug 1, 2014.
What does the ME Association do and why? | Our August 2014 snapshot
If you are thinking about joining a patient support and research funding ME/CFS charity you’ll want to know what we do in relation to DWP benefits, campaigning, management, medical education, NHS Services, the NICE guideline on ME/CFS, political activity and research, as well as providing much needed support and understanding for people with ME/CFS. Along with the reasons why…
So here’s a brief summary of what goes on ‘behind the scenes’ at The MEA.
If you want to find out more about any of the topics below, they are covered in detail in the relevant sections of the MEA website, and in news items covering any recent developments.
Good to see this - over the years I've seen a fair number of people make up in their heads what some of our charities do and then give them a public kicking for engaging in these mythical activities so I think it's an excellent idea to have a summary.
Thanks. Surely you should also mention trying to restrict quackery. That you have been working to draw attention to the problems with the spin around PACE is really important (imo anyway). I think that trying to limit the harm done by poor quality and misrepresented research is probably the most important thing ME patient groups can do at the moment.
There is a brief mention of the work we do in relation to challenging and reporting unsubstantiated therapeutic claims being made in both the alternative and private medical sectors:
We believe that far too many unsubstantiated therapeutic claims are being directed at people with ME/CFS by the alternative and private medical sectors. So we regularly monitor adverts that are aimed at people with ME/CFS and refer them, when necessary, to the regulatory authorities. Complaints to the Advertising Standards Authority relating to adverts for the Lightning Process and the ME Cure Clinic have recently been upheld.
And yes, we ought to include a reference to what we have been doing in relation to questioning the PACE trial results. I will add this to our next update!
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