I think this is an important point. The situation is not ideal, but it is not, in my view, irredeemable either (unlike PACE). The jury is out on AfME. If the MEA did leave who would then hold the SMC to account from the UKRC? And who would replace the MEA? Would it necessarily even be a charity?
If not the UKRC, then what could take its place, and who would have the power, influence and access to funding to set it up and commission biomedical research?
I know it's not a lot of consolation to say it could be worse (when we have had so much of worse and frankly terrible) and the EC's will always be pushing their agenda's. But they have a lot less impact when surrounded by the kind of research which was presented at the last conference.
If, despite the people on the board the UKRC put on a conference this year which had a psychosocial bias I would be much more worried. The MEA got it right on PACE and XMRV, and I hope they are in a position to influence the development of the UKRC. It will be interesting to see what will be presented at next year's conference.
Those with long memories will recall that back in 2004, when the PACE trial was kicking off, the MEA was invited to be involved from the patient perspective
We met with the organisers at Barts Hospital in London but declined to do so because we had major concerns about what was going to happen with the PACE trial
In fact, we were so concerned that we organised a petition that was sent to the MRC and the Dept of Health
From ME Essential magazine at the time:
ME Essential: 'The MEA stand firm'
In the July issue of ME Essential (pages 3-4), we set out a list of criticisms
and concerns about the PACE trial - information that is still available on The MEA website at
www.meassociation.org.uk.
On July 8, we met with Dr Peter White and his colleagues to discuss these points in more detail.
We have also put forward our reasons for opposing the trials at meetings with officials from the Department of Health and the Medical Research Council.
We have also agreed to publish (unedited) a written response to our concerns and criticism that has been prepared by Dr Peter White. The statement below summarises our current position in the light of all these events:
1. The MEA remains unconvinced that the PACE and FINE trials will provide any new and significant information about the benefits and risks of cognitive behaviour therapy (CBT), graded exercise therapy (GET) and pacing.
2. We continue to believe that the very large sums of government money being spent on these trials - over £4 million - could and should be better used to fund research which investigates the underlying physical causes of ME/CFS.
3. We welcome the support that Dr White and his colleagues have given towards The MEA campaign for more research into the physical causes of ME.
4. We also welcome the fact that many of the points we have made to the
organisers about the way in which the trials are going to be carried out have been acknowledged.
5. Despite our continuing reservations about the value of these trials, they are about to start. We therefore consider it is important for the whole ME community that they are properly monitored. We therefore wish to receive feedback - both positive and negative - from anyone who is asked to take part so that we can follow the progress and report back to you - our members.
6. The MEA intends to act in a totally independent manner in its monitoring of the trials. We are not part of any official group that is supervising, selecting patients, or collaborating with the trials.
7. The MEA will now concentrate on securing funding for physical research.
SUPPORT OUR LETTER:
Members who support our continued opposition to the PACE trial still have time to agree the letter we're sending to the Medical Research Council and the Government which appeared on page 2 of our last issue.
Send your message of support today to: xxxxx
