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…
spoonseekerdotcom 
It is not at all uncommon for highly paid executives to make statements like ‘a bold and ambitious agenda for change’. I think the more they are paid the more they feel inclined to trot such words out. I too have a bold and ambitious agenda for change. I plan to get better and lead a full and active life. That was easy to say too. I just have no idea how I will achieve this. Perhaps I will do a bit of brainstorming and seek solutions rather than problems. I’ll take a focused approach and usie a broad brush of methods to achieve enviable outcomes.
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Fair comment. She also says ‘people with ME deserve better’. Can’t argue with that one. To be honest, my (cautious) optimism about Sonya is in a large part due to her willingness to engage with various criticisms I’ve made previously.
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AfME has a big hill to climb as far as I am concerned. The CEO is very well paid, so she should deliver a lot, not just platitudes. I used to subscribe to both AfME and MEA. I have kept up with my sub to MEA but I did not feel there was any sense paying out to AfME as well. I’ll stick with MEA at least as long as Charles Shepherd is involved. I am very impressed with him, and I think the whole team do a very good job as they are mostly volunteers. AfME does at times seem a bit weird. But organisations go through peaks and troughs. MEA was falling to bits before Val Hockey left. She tried to sack Dr Shepherd but it backfired on her. She was out of touch with the membership and didn’t realise they would support Dr Sheoherd en masse.
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I remember that difficult time at the ME Association. They disowned all their local groups and seized their funds overnight. It was extraordinary. Yes, I think it was only due to Charles Shepherd that the MEA pulled through at that time. He does a remarkable job on our behalf and has done for many years. I agree that the ME Association is by far the best of the two organisations at present. But as I say, the media have Action for ME in their contacts list so it make sense to have them on our side – I mean really on our side – as well, and I do think Sonya is a very capable person. Considering all the baggage she’s had to take on with AfME, I think she’s done pretty well. As people keep saying, she’s very well paid – but so too, presumably, were her predecessors, not all of whom have covered themselves in glory to say the least.
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Thank you, very well said. We also look to Action for Young M.E. to condemn, MAGENTA, the forthcoming ‘OACE ‘ trial on vulnerable sick children.
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Thanks, Terri. I’d be very surprised to hear such condemnation from AYME, but we can always hope….
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Good letter. I stopped being a member years ago when their magazine just became advertorial for quack ‘supplement’ cos. They got more concerned with keeping themselves in work than actually helping patients. I do think it has seemed more professional since Chowdhury arrived on the scene though.(y)
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I’d rather not get into too much politics, but having supported the two above plus Invest in ME over the years, I’ve had to thin down my efforts due to lack of energy and now spend more time on the Invest in ME site. When you think that they are all doing their best for ME sufferers, it does surprise me that they have their own various ‘angles’ of attack or agendas. Surely if they listened to their ‘readers’ they would pretty much all be doing the same, and that includes the supporting of PACE Data Release. It would be a wonderful day if they all got together as one body, maybe called something like The Voice of ME, speaking on behalf of those who are ill. If they are to stay separate, maybe they should meet to agree as to which elements each would concentrate on, so that there is less of an overlap and watering down of the strength of the message we need to be getting across.
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I have another chronic health condition for which there seems to be only one substantial national support group in the UK and I feel they might benefit from some competition! So I’m happy for there to be more than one group for ME and there is always going to be scope for more than one approach, I think. However, I do agree that we don’t need quite as many organisations as we seem to have and the areas of overlap must inevitably be a waste of the some of the very limited funding available. What exactly we do about it, I don’t know, other than to vote with our feet and only support the organisation(s) that seems to us to be doing the best job – as you seem to have done, Bill. AYME we can do without, I think: their failure to support the release of the PACE data was the last straw as far as I am concerned, though it wasn’t a surprise. As for AfME, I wish them well but I wish they would understand the extent of the betrayal committed by their previous management in supporting and failing to properly oversee the PACE Trial. It must be infuriating to feel that they are trying to help people with ME yet at the same time be aware that they are anathema to so many patients. Yet the patients’ fury about what happened is far from groundless. Nor is the patients’ disquiet about some of the researchers to whom they give funding. They keep on doing it and then get upset when patients don’t like it. It has happened again just now. Do they not understand the situation or what? It is all a shame and a waste of everyone’s limited energy but it is like they keep putting their hands in the fire then complain they get burned. I don’t like to see it happen but it is hardly a big surprise.
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