Action for ME: The PACE trial and behavioural treatments for M.E. [position statement]

Thank you @Cheshire and @Andy for sharing our statement, and many thanks to all who have shared feedback so far. Sonya (Chowdhury, our Chief Executive) and I will take time to read it all and share with the team as appropriate. I am in transit today and tomorrow, but plan to come back and respond to questions and comments before the end of the week.

Best wishes
Clare Ogden
Head of Communications and Engagement
Action for M.E.
 
I thought I would use this opportunity to give Dr Phil Hammond another prod:



By endorsing a charity which has signed the open letter to The Lancet he is half-way there. To have someone with such a high profile on side would be extremely helpful but I am not optimistic. He may have been prepared to risk sacrificing his BBC job for the sake of a very popular cause (from which his celebrity status and public image will benefit) but I doubt he has the courage to jeopardise his NHS job by speaking out for such an unfashionable cause. I hope he proves me wrong.
 
Trish said:
Despite this being a good step in the right direction, I can't help wondering whether the best service AfME could give to the ME community would be to close themselves down as not fit for purpose, shut down their website with all its misinformation, and pass all their resources over to the ME Association so there could be one large national UK charity that provides information for patients, families and doctors.
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I must agree that I don't think we're best served by having lots of relatively small charities. If people want to donate to cancer research in the UK, it's a no-brainer to donate to Cancer Research UK, because they're massive and have a promotional budget to match, presumably. Potential donors don't have to weigh up all the pros and cons of lots of different organisations and just give up because they're confused or repelled by the ugly atmosphere, as is the case with ME. And a single charity (or just one or two) with relatively large budgets could get more serious research done, and make it easier for researchers to apply for funding.
 
Trish said:
Despite this being a good step in the right direction, I can't help wondering whether the best service AfME could give to the ME community would be to close themselves down as not fit for purpose, shut down their website with all its misinformation, and pass all their resources over to the ME Association so there could be one large national UK charity that provides information for patients, families and doctors.
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I would agree. This is still good news but they just can’t seem to hop off that damn fence completely....
 
Sasha said:
I must agree that I don't think we're best served by having lots of relatively small charities. If people want to donate to cancer research in the UK, it's a no-brainer to donate to Cancer Research UK, because they're massive and have a promotional budget to match, presumably. Potential donors don't have to weigh up all the pros and cons of lots of different organisations and just give up because they're confused or repelled by the ugly atmosphere, as is the case with ME. And a single charity (or just one or two) with relatively large budgets could get more serious research done, and make it easier for researchers to apply for funding.
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YES! I completely agree with this and have been saying it for a long time.

Careers, egos and reputations must not be prioritised over patients’ best interests, whether we are talking about researchers, doctors, establishment figures or people working for charities. As a community we have such limited resources and yet so much of what is done by UK ME charities is either competiting with one another or duplicating each other’s efforts. Let’s have a new charity, taking the best from each, with a clear set of principles and objectives that everybody can support.

Perhaps this would be more appropriate as a new thread?
 
Robert 1973 said:
YES! I completely agree with this and have been saying it for a long time.

Careers, egos and reputations must not be prioritised over patients’ best interests, whether we are talking about researchers, doctors, establishment figures or people working for charities. As a community we have such limited resources and yet so much of what is done by UK ME charities is either competiting with one another or duplicating each other’s efforts. Let’s have a new charity, taking the best from each, with a clear set of principles and objectives that everybody can support.

Perhaps this would be more appropriate as a new thread?
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I agree that's a new topic so if you'd like it to be discussed further, a new thread would be a good idea. :)
 
Sasha said:
I must agree that I don't think we're best served by having lots of relatively small charities. If people want to donate to cancer research in the UK, it's a no-brainer to donate to Cancer Research UK, because they're massive and have a promotional budget to match, presumably. Potential donors don't have to weigh up all the pros and cons of lots of different organisations and just give up because they're confused or repelled by the ugly atmosphere, as is the case with ME. And a single charity (or just one or two) with relatively large budgets could get more serious research done, and make it easier for researchers to apply for funding.
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An issue in the ME world is I think it is important that people with the illness along with family members (who live with them) are involved in a lot of the decision-making. This is easier to do with smaller charities. A lot of the bad decisions in the field have been made by CEOs and the like (Chris Clark, Mary-Jane Willlows, etc.).

If the biopsychosocial model becomes less important, this may become less of a concern.
 
Interested to hear how @Action for M.E. materials will be reviewed. I would hope there would be patient involvement rather than as in the guide to Pacing, being written by an CFS/ME clinic. CFS/ME clinics have less expertise than patients- see @Keela Too blogs on pacing for content that is actually useful. Also see the advice given to former world champion cyclist Mark Cavendish about complete rest following EBV infection. Thanks in part to lack of clarity in AFME pacing guide combined with disinterested Dr I started to try to go back to work on phased return when I could have stayed off and rested for several months on sick pay. Who knows whether I would have eventually had to retire anyway but it is possible resting would have been beneficial. I don’t think BACME will be supportive of saying that resting is an appropriate strategy for ME patients and it needs to be highlighted so people know it may help.
 
Dolphin said:
An issue in the ME world is I think it is important that people with the illness along with family members (who live with them) are involved in a lot of the decision-making. This is easier to do with smaller charities. A lot of the bad decisions in the field have been made by CEOs and the like (Chris Clark, Mary-Jane Willlows, etc.).

If the biopsychosocial model becomes less important, this may become less of a concern.
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Additional points I’ve remembered:
The Arthritis charity in my country had a very insulting rheumatologist give talks about Fibromyalgia. He’s now deceased but had some terrible views: biopsychosocial plus his own weird theories (e.g. people with ME and Fibromyalgia can’t drink alcohol but if they could, they’d all be alcoholics). The arthritis charity is run by lots of professional people with little sign of much patient involvement. The chances of knowledgeable patients picking him would be tiny.

One of the national MS charities in the UK has been supporting Rona Moss-Morris and Trudie Chalder with research on CBT which is a very similar model to the CFS model. Again I wonder how much patients were involved in this decision.
 
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Invisible Woman said:
In my view this is simply repositioning themselves, now that so many people, even outside of the ME world, now know PACE was a truly terrible trial, from concept to design to handling the data.

They will continue to try to play both sides, but they need to put a little distance between themselves and their PACE pals to keep membership numbers up.

@Action for M.E., If you're listening, it's easy to denounce something (you helped happen) when everyone else has already done all the hard work proving it's bad. If you really are interested in the well being of patients and your members, prove it.

Condemn BACME, Crawley, the Lightening Process, SMILE, etc..

Otherwise, it's all too little too late.
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I totally agree, and they needed to clearly and emphatically reject the behavioural model of ME/CFS and the use of CBT/GET (and all watered down forms of these treatments), and totally acknowledge the harm caused, and still being caused by these treatments and the depth of their part in all of this, which they've failed to do.

As as for still going along with BACME......unbelievable.
 
JaimeS said:
I winced there, too. First rule of apologizing: you're not apologizing for others' "feelings". You're apologizing for your inadvisable or hurtful actions.
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To be fair the apology did seem sincere and SC may have had to follow legal advice on how she phrased it. Pure speculation on my part, but maybe she ran it by some people who advised her that a sincere apology containing an admission of having caused harm could make it easier for others to establish legal liability later. Like I said, I would have overlooked the shortcomings in her apology if it hadn't been for the GET and BACME drivel ruining their statement further down.
 
TiredSam said:
To be fair the apology did seem sincere and SC may have had to follow legal advice on how she phrased it. Pure speculation on my part, but maybe she ran it by some people who advised her that a sincere apology containing an admission of having caused harm could make it easier for others to establish legal liability later. Like I said, I would have overlooked the shortcomings in her apology if it hadn't been for the GET and BACME drivel ruining their statement further down.
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I think that may be true. A lawyer would watch out for that.
 
TiredSam said:
To be fair the apology did seem sincere and SC may have had to follow legal advice on how she phrased it. Pure speculation on my part, but maybe she ran it by some people who advised her that a sincere apology containing an admission of having caused harm could make it easier for others to establish legal liability later. Like I said, I would have overlooked the shortcomings in her apology if it hadn't been for the GET and BACME drivel ruining their statement further down.
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Yes that was my thoughts too.

Thankyou @Action for M.E. for the statement. It’s a step forward, but not far enough. I hope you do take note of the feedback on this thread.
 
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