Following an action from patients asking their representing organizations to support their interests, ten have come out in support by writing to Queen Mary University London calling on them to release the anonymous PACE trial data.
One, the Association of Young People with ME (AYME) ignored patients at first. I wrote them an open letter, and they finally said they would discuss the issue at their Board meeting in March and make a final statement on the matter. That statement, which I just received by email, is copied below:
QMUL research data: Chair of Trustees states Board’s final decision
In recent weeks, the Board of Trustees of the Association of Young People with ME (AYME) has received requests from individuals within the ME community that they write to Queen Mary University London (QMUL), asking them to release the anonymised PACE data to researchers. At the board meeting, held on the 3 March, the matter was discussed, with the board unanimously agreeing on the following:
The QMUL data has already been released to and reanalysed by the Cochrane Collaboration (perhaps the most rigorous of research teams), which came to the same conclusion as the original researchers. This release to a bona fide researcher who has an ethical duty of care for the data complies with a condition of MRC funding. For the same reasons, it remains open to other bona fide researchers to request the data, subject to the same ethical undertakings. Therefore there is no requirement for AYME to write to QMUL and we will not be doing so.
AYME continues to care for, connect with and campaign on behalf of all children and young people affected by M.E./CFS, and this decision is fully in line with our work. No further comment will be made regarding our position on this matter.
M Ellis Chair of Trustees, on behalf of the Board
[to avoid confusion M Ellis is their Chair and is unrelated to myself]
This is a very surprising statement as it flies in the face of patients’ interests. AYME have isolated themselves by taking a stance in opposition to all the other charities. When the PACE data is released, and if it shows that ‘recovery’ was inflated several-fold by the post-hoc changes in recovery criteria then everyone’s first question will be, who took action to keep that a secret? And the second question will be, why?
I will investigate and attempt to answer that second question in my next blog posts. As a patient I cannot accept a charity that has conflicts of interest that trump patients’ interests. It’s time to bring the facts into the light.