Esther12
Senior Member
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With PACE, AfME has an ideal way of showing that they have changed and now recognise that patients deserve to be spoken to honestly and with respect. Their insider role means that they're in a powerful position to criticise the way in which results were misrepresented and spun, and call for the release of results for the outcome measures from the protocol. They keep refusing to do so. They should be calling for the release of more information... instead they're providing statements to QMUL for fighting against FOI requests and help keep patients in the dark.
I just re-read the statement...
How could it encourage hope?
Edit: My comments in bold.
As a more minor aside about this project (the specifics of which I actually think are less important that the politics): Why not use other patient groups who suffer from problems with pain as a control? Otherwise, how will you know whether you are increasing your understanding of why patients with ME/CFS patients suffer so much pain, rather than just finding normal responses to chronic pain? As the project is currently designed, it looks very likely to end up with results that are of no value to patients, but can be used to justify more manipulation/rehabilitation from White.
I just re-read the statement...
How could it encourage hope?
Edit: My comments in bold.
Sonya says, “I am aware that some members of the patient community are likely to be critical of Action for M.E. for considering accepting the CFS Research Foundation’s donation of funds in view of the research project it is currently funding. [Why are they likely to be critical? Are there good reasons for concern? Or is it just foolish anti-psychiatry, as is commonly suggested?]
“We are doing so because our Trustees believe that it is essential to foster meaningful engagement between people with M.E./CFS and researchers investigating the condition. [There is already meaningful engagement between people with ME/CFS and some researchers - but the only engagement with those who have shown themselves to be as untrustworthy as White should be based upon trying to force him to be more honest, release more data, and prevent him getting more funding.] Funding such research would mean that we can legally set out clear terms and conditions regarding required levels of communication and co-operation. [AfME's actions with PACE show that they are not able to do this effectively. Work on PACE before you decide to have another go! You should not trust yourselves to do a good job]
As a more minor aside about this project (the specifics of which I actually think are less important that the politics): Why not use other patient groups who suffer from problems with pain as a control? Otherwise, how will you know whether you are increasing your understanding of why patients with ME/CFS patients suffer so much pain, rather than just finding normal responses to chronic pain? As the project is currently designed, it looks very likely to end up with results that are of no value to patients, but can be used to justify more manipulation/rehabilitation from White.
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