AYME does not represent the ME community and its actions have now become harmful to ME sufferers

annette barclay
annette barclay 0 Comments
518 Signatures Goal: 1,000

 

THIS PETITION IS NOW CLOSED. A COPY HAS BEEN PRINTED, BOUND AND SENT TO AYME AS A REGISTERED LETTER.

THANK YOU EVERYONE FOR SIGNING AND FOR YOUR VERY THOUGHTFUL COMMENTS 

ANNETTE AND THE PETITION TEAM

----------------------------------------------------------------------------------------

We the undersigned were dismayed to read that the Association of Young People with ME (AYME) stood alone in officially ‘welcoming’ the findings of the PACE trial  when they were reported in an avalanche of damaging and destructive media publicity on 18th February.

We believe that this contrived trial, founded upon selective and unrepresentative data sets, misleading interpretations of case definitions, lack of  objective outcome measures and the false premise that ME/CFS patients are simply ‘deconditioned’ and suffer from ‘fear avoidance’,  has set back awareness, acceptance, and a proper understanding of M.E. over  20 years.

PACE is now likely to further negatively influence existing policy guidelines such as NICE that are already deeply unpopular; it will make it even harder for people with M.E. to access comprehensive medical assessments, APPROPRIATE services, welfare support, health insurance and ill-health pensions and it may also prove to be extremely damaging to the amount of resources available for biomedical research.                                             

We believe that any ME charity ‘welcoming’ PACE is NOT acting in the best interests of people with M.E. and their families. It also indicates that they are so seriously out of step with the wishes and aspirations of the rest of the ME patient community that it calls in to question their suitability and credibility to represent people with M.E.  as they now appear to be indistinguishable from those responsible for promoting so much selective misinformation and  propaganda  in the first place. 

To clamour for services at any cost, without any reference to quality, appropriateness, or suitability, is doing people with M.E. and their families a disservice and putting the health of people with M.E. at risk.

We call upon AYME to reconsider their position and retract their statements on PACE before harm is caused to M.E. sufferers blindly following their advice that graded exercise is now safe.

This petition will be passed on to the AYME Board of Trustees and may be made available to other policy makers seeking to consult with patients with M.E. 

Sponsor

Annette Barclay Person with ME

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