For the attention of The Association of Young People with ME:
Board of Trustees
Copies sent to:
I would like to inform you of the growing concerns many sufferers and advocates have over the way AYME conducts itself and influences the lives of young people with ME. The enclosed petition was drawn up in reaction to the response made by AYME to the PACE trial publication and to its ongoing support of the clinical trial on children known as SMILE. The petition ran from to 12th May I understand that another petition has already been delivered to AYME in response to AYME’s comments on the results of the PACE trial: “AYME does not represent the ME community and its actions have now become harmful to ME sufferers”
Young people are particularly vulnerable and open to coercion, especially by adults and those in authority. As the largest charity for children and young people with ME, AYME has a lot of influence and therefore a great deal of responsibility. It is very difficult for children to speak up against the ideas and beliefs held by those in privileged positions and who maintain specialist roles such as AYME’s medical advisers and board of trustees. It is also notable that the size, scope and public face of AYME, including the emphasis on community and friendship, leads parents to believe wholeheartedly that AYME deeply cares for the well being of all its members and puts that well being before all other interests. Parents put their trust in AYME and the advice AYME gives, they are led to believe that these techniques work and are not harmful and their children go on to fully believe this also. It is cruel to allow children to believe they will get better if they only try hard enough and use graded exercise techniques and it is AYME’s responsibility to ensure that children and young people with ME are not put in such a position.
Your support of the PACE publication and the clinical trial on children known as SMILE gives undue credence to the psychosocial model of ME and undermines its true physical nature. It allows public opinion to remain in the dark ages of “yuppie flu” while psychiatrists monopolise funding for ME and none goes to biomedical research into aetiology and treatment. We respectfully suggest you take a more scientific and responsible approach and seek to acquire a true ME specialist medical advisor(s) in place of Dr Esther Crawley – exuberant supporter of CBT and GET – and Dr Derek Proudlove, Child Psychiatrist. This would better serve your charity, which is quickly losing all credibility, as well as your members who deserve far better than this. AYME would truly serve its members’ interests by following the example set by The Young ME Sufferers Trust – a charity for children and young people with ME charity that fulfils its obligation to those it exists to support.
Please consider this a formal complaint presented to you by the 380 co-signatories and the 677 users of Facebook who showed their agreement by clicking “like” on the petition; among them, AYME service users, ex-members of AYME and concerned members of the public. We look forward to your response, which will be placed in the public domain.
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