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AFME have only 5,000 members now?
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AFME trustees should be asking themselves why their membership is falling yearly.
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The last time I asked AFME how many (charity) members it had the response was approx 6,500 in 2011.
In 2010 Tony Golding (AFME Trustee) referred to AFME's "7,000 members". In 2008 I asked AFME how many members and the response from Healther Walker (AFME Communications manager at the time) was "8,000 members". Earlier in the 2000's it was 9,000 members.
As more and more people are being diagnosed with 'CFS' every year, it would appear that existing AFME members are leaving faster than new members are joining.
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AFME maintain a high public profile, make many public and press statements, and ME sufferers have the right to question and criticise the charity's actions and statements, especially when the actions conflict with the charity's public image, which, over the years appears to consist of cosmetic 'campaigns', lots of sweet words.
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AFME's collusion with the PACE Trial is still having destructive repercussions.
By the way, in 2004, AFME promoted the PACE Trial to its members as "A study on Pacing" but barely mentioned that PACE was substantially about CBT and GET. I have the 2004 copy of AFME's magazine 'Interaction' with the article by AFME CEO which enthused "rah rah rah - we have a study on Pacing, Hooray Hooray".
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Only much later did the AFME members learn that PACE was designed and run by White Sharpe and Chalder and was substantially a CBT/GET study with AFME's version of pseudo pacing (the so called 'pacing' provided by AFME was a construction of pacing which was not recognisable to most ME sufferers). Because AFME did not inform their members. The published 'PACE Trial Identifier', and AFME's description of the forthcoming PACE Trial to its members in 2004, were not the same.
That is just one example of AFME saying one thing and doing another.
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Former members should have the right to criticise a charity which they paid membership fees to and which they think has betrayed them. All ME sufferers should have the right to criticise and challenge AFME... because the charity presumes to speak for all ME sufferers.
I agree with Min:
"Many of us feel completely betrayed by them, their collusion in the PACE trial during which they advised that the only form of subjective measurement of results be dropped, their promotion of GET and CBT and the fatigue clinics that torture us with them, their willingness to work with the Wessely school of psychiatry including being part of the Collaborative that includes Esther Crawley and Peter White, their refusal to offer full membership and voting rights to any but their self appointed executive, their advertising of the Lightning Process and other questionable commercial 'treatments' and their enormous salaries compared to the tiny amount they spend on research."
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