AYME petition

[jace]

Action for Young People with ME (Esther Rantzen, President, Esther Crawley, Medical Advisor) have made this statements:

Two effective treatments benefit up to 60 per cent of patients with Chronic Fatigue Syndrome or Myalgic Encephalomyelitis (CFS/ME), according to a collaborative trial funded by the Medical Research Council (MRC) and UK government departments...Professor Trudie Chalder from Kings College London and a co-author, said: It is very encouraging that we have found not one but two treatments that are similarly helpful to patients, which provides them with a choice. We now need to find out what the common essential ingredient is that makes these treatments work, and which particular types of patients will respond best to which therapy.

http://www.ayme.org.uk/article.php?sid=7&id=312

Natch, they are supporting the Lightning Process SMILE trial, lead researcher E. Crawley.

Patients are objecting, via a petition:

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.

Full information here:
http://www.thepetitionsite.com/takeaction/485/900/462/

Please support this action by signing the petition.

 

[Bob]

Thanks jace.

Name and comment added, although I can't see them added to the list of signatories yet.

Actually, I think there might be a bug in the system, because the petition indicates that the last signature was added yesterday, 11th April, at 4.46pm.

 

[ukxmrv]

Bob,

The same thing happened to me on this petition and when I used it before. There are long delays in this petition site.

 

[Bob]

Bob,

The same thing happened to me on this petition and when I used it before. There are long delays in this petition site.

oh ok, thanks ukxmrv... I won't worry about it then!



ETA:
My name has been added now...

This is what I said in my comment:

"AYME is misleading the public and its members by saying that GET and CBT are 'effective treatments' for CFS patients. The PACE trial concluded that the GET and CBT were only 'moderately effective'. However, when the actual results are analysed more carefully, they show that in fact, GET and CBT are only minimally effective treatments and this is for a selected patient cohort that does not represent patients in the CFS community, as unofficial diagnostic criteria were used to recruit the patients, which included patients who were fatigued due to psychiatric causes. ME patients widely agree that CFS/ME is a biological disease, which is not caused by 'maladaptive illness behaviours'."

 

[justy]

Thanks for posting this, have signed.