This petition calls for the Association of Young People with ME (AYME) to take the necessary action to address the serious concerns outlined below, or cease operating as a charity for children and young people with ME. Specifically:
We call upon AYME to retract its statements about the PACE trial.
We call upon AYME to withdraw its support for the pilot study known as SMILE.
SUMMARY OF CONCERNS
AYME stands alone in its welcome of the results of the study known as PACE, and in its support of a pilot study known as SMILE, led by its medical advisor, Dr. Esther Crawley.
The statements issued on 18th February 2011 by AYME clearly show its support for the conclusions of the PACE trial, despite a raft of scientific and patient evidence to the contrary.
AYME’s call for studies of CBT and GET with children and young people with ME, in the face of all the contradictory evidence, is irresponsible and is counter-productive to the ME patient community’s call for biomedical research into causes and treatments for both adults and children with ME/CFS.
AYME is giving support to another trial (SMILE) that its medical adviser is currently involved in – one in which children are test subjects for a commercial training programme that is based on an unproven hypothesis of the cause of ME/CFS, and which relies on the same biopsychosocial model of ME/CFS as CBT and GET.
In its statements about PACE, AYME gives inaccurate and misleading information which is potentially harmful to children and young people with ME/CFS – see examples listed under supporting information (via link). We believe this to be a very serious breach of trust and duty of care.
We believe that the statements made by AYME show it to be an organisation that can no longer be trusted to serve the best interests of children and young people with Myalgic Encephalomyelitis or Chronic Fatigue Syndrome, or their families and carers.
For the full wording of this petition, including further detail of concerns about AYME’s involvement with a pilot study (SMILE) of The Lightning Process on children with ME/CFS, and examples of misleading and inaccurate information in AYME’s statements on PACE, please click here: http://www.keepandshare.com/doc/2638327/ayme-pace-smile-full-petition-pdf-march-3-2011-10-54-am-133k?da=y
STATEMENTS ON PACE BY AYME
“AYME welcomes the findings of the PACE trial, the largest ever study of ME/CFS treatments”. http://www.ayme.org.uk/article.php?sid=7
AYME’s full statement issued 18th February:
AYME’s comments, as quoted in The Guardian on 18th February:
“The Association of Young People with ME welcomed the findings and said it hoped it would begin to lay to rest fears about graded exercise therapy and CBT being harmful. It called for the study to be replicated in children. Mary-Jane Willows, AYME’s chief executive, said: “These treatments should be made available to all patients by those who are trained and experienced in dealing with CFS/ME.” She added that there was “an urgent need” to find a way to include house-bound patients in a trial. Participants in the study had to be able to get to hospital.”
STATEMENTS ON PACE BY OTHER ORGANISATIONS
The Young ME Sufferers Trust letter to The Guardian:http://www.guardian.co.uk/society/2011/feb/24/truth-about-exercise-and-therapy/print
Invest in ME:
The 25% ME group:
The ME Association :
Action for ME:
European Society for ME:
International Association for CFS / ME:
Professor Malcolm Hooper’s statement on the scientific quality of the PACE Trial:
STATEMENTS ON SMILE BY OTHER ORGANISATIONS
Joint statement by The MEA and TYMES: http://www.meassociation.org.uk/?page_id=1341
Church Times article on the study, “Children should not be used as guinea pigs”:
CALL FOR ACTION
We, the undersigned, call for the Association of Young People with ME (AYME) to take the necessary action to address the serious concerns outlined above, or cease operating as a charity for children and young people with ME.
To sign the petition: http://www.thepetitionsite.com/takeaction/485/900/462/
To read the full petition wording with additional information and links: http://www.keepandshare.com/doc/2638327/ayme-pace-smile-full-petition-pdf-march-3-2011-10-54-am-133k?da=y