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ME/CFS charities call for the release of the PACE Trial data
Worth quickly summarising where we are now:
Dr Shepherd, has there been any contact with US charities such as Solve ME/CFS? It would be good to get them on the bandwagon too.
As always, thanks for the work that you do.
As far as asking ME/CFS charities overeas to write to QMUL regarding release of PACE trial dat I have not made any approach and I'm not aware of anyone else doing so
I'm open to persuasion but I'm not sure that letters from overseas ME/CFS charities are going to be useful here
Be interesting to see what Clark thinks…..
I don't see any downside to having international organisations write if they were aware of the issues, but can see that having one person trying to organise this might be an extra chore.
To: solvecfs@solvecfs.org
Subject: Free the Data! (PACE Trial)
Date: Feb 13, 2016 2:51 PM
Hello,
Thank you for your quick and forceful response to the recently released NIH Clinical Center study protocol. It definitely helps my morale to see your organization standing up to the NIH and demanding that they use proper methodology and criteria for researching our illness.
As you know, there are many patients who, being confined to the house, have little we can do besides paying very close attention to every detail affecting the research and political climate. Not much escapes our attention. Your organization's voice and connections, when added to our eyes and ears, are a powerful force.
I am writing today to ask you to add your voice to the chorus of calls for release of the PACE trial data. The ME Association has publicly posted their February 9 letter to Queen Mary University of London (1). Dr Shepherd's letter thoroughly explores the issues and could serve as the basis of your own letter.
The Wessely School acts as an immovable object. But together the patient, academic, and advocacy communities are an immovable force that is quickly building strength. Just yesterday (Feb 12) "Action for ME" issued a statement supporting release of the data (2). Not even a psychiatrist can muddle the meaning of their words: "Action for M.E. strongly supports the release of anonymised data from the PACE trial."
We're getting close, but we are not quite strong enough to shove the Wessely School out of the ME research arena. One more good push should do it. Please add your voice and reputation to the call to "FREE THE DATA" to make sure it happens.
Jim Ellsworth
Littleton, Maine
(1) http://www.meassociation.org.uk/201...o-release-of-pace-trial-data-9-february-2016/
(2) https://www.actionforme.org.uk/news/sharing-research-data-board-of-trustees-states-our-position/
Zaher Nahle was one of the signatories on the open letter to the Lancet.I sent an email to Solve ME/CFS.
Zaher Nahle was one of the signatories on the open letter to the Lancet.