On Tuesday morning the All Party Parliamentary Group on ME will be discussing medical education on ME/CFS at the House of Commons.
On Tuesday afternoon at the House of Lords, the Forward ME Group, chaired by the Countess of Mar, will be discussing BACME and NICE guideline issues with Dr Alastair Miller from BACME (the British Association for CFS and ME) – as well as DWP benefit issues, including the change of contract for carrying out medical assessments from Atos to Maximus:
We will also be discussing the latest analysis of PACE trial data in The Lancet at both meetings.
Dr Charles Shepherd
Medical Adviser, The ME Association
I sincerely hope that you will be taking BACME to task over their unwarranted enthusiasm and support for the PACE trial. Until they withdraw that support and publicly apologise for pedalling such quackery (against the will and better judgement of patients), they have absolutely no credibility in my eyes.
We have to be careful not to appear to be constantly complaining. That will play into the psychiatrists hands who will label us as hyperchondriacs.
We must provide a strong counter argument to the PACE trial. Tell them about the stanford brain abnormalities, the Raiken institute brain inflammation, the immune system differences etc etc. we have to say “look at this mountain of evidence that this is a physical disease. Now we need more funding to find the cause and develop effective treatments.”