Action for ME has now joined the ME Association in asking for the release of data from the PACE Trial. This is a very encouraging development. Well done to all who wrote in – and to Clark Ellis whose blog encouraged us to do so.
Action for ME have supported PACE in the past and let down their members and ME patients in general very badly in the process, but they are now under largely new leadership, with a new CEO and new Medical Advisors. The contributions of CEO Sonya Chowdhury in the media have been noticably more robust in recent months and her profile page on their web site speaks of ‘a bold and ambitious agenda for change’.
There are those who will not forgive Action for ME for their past mistakes but, like it or not, they are frequently called upon for comment by the media and it seems to me that it is in the interests of people with ME to have an Action for ME that is on our side, which is stridently putting our case with our support, rather than one we perceive to be our enemy.
According to the Feb 12th statement by the AfME Board of Trustees, “The Board is continuing to consider Action for M.E.’s position on the PACE trial and related issues more widely, and will make a further statement in due course”. So it seems to me that this is a good time for ME patients to let them know what we would like this position to be. I have just sent them a message to this effect which I have pasted in below.
Please consider contacting Action for ME yourself, especially if you are a member. Feel free to reproduce my message, in part or in full, though if you have the spoons available to write in your own words, then so much the better. I don’t think the message has to be long or complicated: perhaps the shorter and more to the point it is the better. Not everyone is as long-winded as I am! I strongly suggest that you keep it polite and supportive though, however annoyed you maybe with AfME’s previous actions. Anger can get in the way of the message. The truth is powerful enough by itself.
My message follows:
Dear Ms Chowdhury – I am writing to thank you and Action for ME for joining your voice to those who are asking for the release of the PACE Trial data. I think it is very important that the claims of the trial are put under independent scrutiny to finally establish if, as a great many suspect, the evidence fails to support them.
I notice from your statement of February 12th that your Board of Trustees are ‘continuing to consider Action for M.E.’s position on the PACE trial and related issues more widely, and will make a further statement in due course’. I am therefore also writing as a member of AfME to express my wish that you withdraw your long-standing support for the trial’s claim to justify the use of GET and associated CBT for people with ME, therapies which – as you know – have been shown to be potentially harmful in patient surveys (including those of AfME).
I know that your former CEO, Sir Peter Spencer, expressed surprise and disappointment at the result of the trial and it has now become obvious that this result was obtained by means of a large number of irregularities in the execution of the study. I’m sure you are aware of these so I don’t need to go into them here, but of course they can be found in David Tuller’s in depth critique of the study.
Like many people with ME. I had hoped that we could put the PACE trial behind us and concentrate instead on new biomedical research. But it has become obvious recently that the PACE researchers intend to keep revisiting their data over and again to see what further statistical sleights of hand they can publish. Each time these publications appear, they are accompanied by further unhelpful, misleading publicity in the media which the PACE researchers themselves make little or no attempt to correct. It is then left to the patient organisations, AfME included, to dash round the media studios trying to repair the damage. This is an intolerable situation which surely cannot be allowed to continue – especially in view of the mounting evidence that these ‘findings’ are based on unreliable science.
Not only does PACE support the use of potentially damaging treatments for people with ME/CFS, but it provides so-called ‘justification’ for the misconception that ME is a psychogenic condition. This in turn leads to parents being blamed for their children’s illnesses and to threats of children and young people being taken away from their homes. Only the other day, we saw the third anniversary of the abduction from her home of Karina Hansen in Denmark. All this time later, Karina is still effectively imprisoned and denied access to friends and family, her condition apparently deteriorating in the meantime. The psychiatrist responsible for this situation is an enthusiastic supporter of the PACE trial, which is used to justify such cruelty, not only in the UK but all over the world.
There is also little doubt that the psychosocial model of ME so enthusiastically championed by PACE has done much to divert funds from biomedical research into ME throughout the world. With funds so tight, it is very convenient to pretend that ME can be ‘sorted’ by inexpensive therapies like GET and CBT; to pretend that, in spite of all evidence to the contrary, this isn’t really a complex condition requiring expensive tests and expensive research which may lead to expensive treatments, just a bit of fear and deconditioning.
I have seen your new leaflet for the newly diagnosed and much of it looks very useful, but the absence of any specific mention of either GET or CBT is a bit of ‘an elephant in the room’. Surely it is time for AfME to stop tiptoeing round this issue and make your members fully aware of the limitations and dangers of these treatments and the trial which purports to support their use?
Action for ME has much to offer people with ME. I often recommend fellow patients to your pacing booklet and welfare helpline in particular. Your recent report on the severely affected drew much-needed attention to this horrendous situation. I hope you choose to break with the past, fully come round to stand beside your members and drop your defence of the unproven, soon to be fully discredited PACE approach to ME.
Action for ME’s address: 42 Temple Street, Keynsham, BS31 1EH plus there’s always email and Facebook of course…