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

Andy

Andy

Retired committee member
@Cheshire first posted about this here, but I thought it was important enough to warrant its own thread.

This statement sets out our position on the PACE trial and behavioural treatments for M.E.

In the past, Action for M.E.’s strategy was to support all forms of research into M.E. As part of this strategy, in 2007 the charity was asked to be involved in a large-scale research project, the PACE trial, which compared standardised specialist medical care (SMC) alone, with SMC plus adaptive pacing therapy (APT), cognitive behavioural therapy (CBT), or graded exercise therapy (GET) for people with M.E./CFS.

Serious concerns about the PACE trial are well documented, with repeated questions raised about its methodology, and the reliability of its results. As reported in The Times newspaper last week, an open letter to The Lancet, signed by more than 100 scientists, clinicians, parliamentarians and patient organisations, including Action for M.E., has been sent three times, asking the journal to reanalyse the trial’s findings.
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A summary of our position

Action for M.E. does not support any treatment approach:
  • based on the deconditioning hypothesis
  • in which patients’ legitimate concerns about the consequences of exercise are dismissed or ignored.
We fully support treatment approaches which:
  • aim to reduce and stabilise symptoms before any appropriate increase in activity levels is attempted
  • put the person with M.E./CFS in charge of the aims and goals of the overall management plan.
We would like to see:
  • clarity from specialist NHS M.E./CFS services about the approaches they offer, and the theoretical basis behind them, to help patients make informed decisions about the treatments they are being offered
  • health services and commissioners working directly with people affected by M.E. to develop patient-led services
  • good-quality, independent evaluation of the programmes being offered by specialist NHS M.E./CFS services.
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https://www.actionforme.org.uk/news/pace-trial-and-behavioural-treatments-for-me/
 
Definitely a step in the right direction (and about time) however;
"We will learn from our past mistakes"
"According to BACME, specialist NHS M.E./CFS services should advocate collaborative work, patient-led goals and support to stabilise physiological patterns of rest, sleep, movement and diet. At the same time, psychological/emotional support should be offered, aimed at supporting patients to come to terms with being diagnosed and/or living with the condition, and to understand the factors and behaviours (eg. doing too much) that jeopardises that stabilisation.

We fully support this approach".

BACME:
"
Once a diagnosis has been made, patients should be considered for further evaluation to
see if they would benefit from the evidence based treatments (CBT–cognitive behaviour
therapy and GET–graded exercise therapy).
Where these specialist services are not available, rehabilitation using those principles
(as described later in this guide)."

"
The aim of a rehabilitation plan is to regulate bodily systems and to begin to
desensitise a heightened level of sensory processing inside the body by doing a small amount (a baseline) of activity and achieving a better balance of rest in all areas of activity in daily life. Having
achieved this, the challenge is to then gently build up activity over time thereby re-educating the body and increasing tolerance for exertion."

https://www.bacme.info/sites/bacme..../BACME Therapy & Symptom Management Guide.pdf
 
Sonya Chowdhury says:

By having a role on the Steering Committee and Management Group, there was a de facto endorsement of the use of £5m of research funding to focus on behavioural treatments. Neither I nor the current Board of Trustees would agree to do this now, as reflected by our current research strategy, the focus of which is collaborative biomedical research.
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I am sorry that the charity did not advocate for this considerable level of funding to be invested in biomedical research instead. It was never our intention to contribute to any stigma or misunderstanding about the illness and I sincerely apologise to those who feel that, in not speaking out sooner and more strongly, we have caused harm.
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Looks like a step forward. Although they don't explicitly condemn GET and appear to still leave room for it or similar approaches.

There is no credible evidence that GET is truly effective, so they should just say that they don't support it due to lack of credible evidence combined with consistent reports of harm. Simple as that.
 
Superficially it’s welcome, at this time it removes an unhelpful leg of support from underneath the establishment, trying to maintain status quo. However as above, quoting the BACME , staunch promoters of GET, CBT and PACE trial I think, undermines it a bit.
I would say over this time MRC position has moved from bascically supporting the CBT model AFME rejects here, to now being open to biomedical research for some of the CFS spectrum which they support through the CMRC. This move, which is just a change of beliefs really, just isn’t enough. And organisations like MRC have to recognise that this behavioral CFS narrative they supported that filled text books, journals and media needs to be visibly rejected for the world of science to u turn as we need.
 
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So now AfME have said (in a roundabout way) that they do not support PACE and its conclusions, will they now similarly condemn Crawleys research (MAGENTA, FITNET-NHS and others) as it all heavily relies on PACE as justification for its existance.
 
I agree that:

- The statement is a welcome step in the right direction
- It is a mistake to endorse BACME

I would add that it is possibly unwise to endorse any part of the NICE Guideline at this stage (even a part which is acceptable).

“Sonya Chowdhury” said:
“I am sorry that the charity did not advocate for this considerable level of funding to be invested in biomedical research instead. It was never our intention to contribute to any stigma or misunderstanding about the illness and I sincerely apologise to those who feel that, in not speaking out sooner and more strongly, we have caused harm.
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In the past I have asked @Action for M.E. to acknowledge its mistakes and apologise. I thank Sonya for doing this. However, I would have liked her to apologise to everybody for the harms that AfME has caused rather than only to “those who feel that [AfME] have caused harm”. This may seem pedantic but:
1) People will have been harmed who are unaware of the issues and AfME’s involvement. They deserve an apology too.
2) It is important for AfME to acknowledge that harm that has been caused, not only that some people may feel that harm has been caused. [Edited]

Thanks to AfME for listening. I hope this will be a on going process.
 
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Alvin said:
Just recently they were defending the indefensible now they have seen the light... :whistle:
Sure.

This sounds like damage control.
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I don't think that's fair. They've always disputed the PACE trial's findings.

But the charity Action for ME said the conclusions were exaggerated and questioned the safety of graded exercise therapy.

Its CEO, Sir Peter Spencer, said: "The findings contradict the considerable evidence of our own surveys.

"Of the 2,763 people with ME who took part in our 2008 survey, 82% found pacing helpful, compared with 50% for cognitive behavioural therapy and 45% for graded exercise therapy.

"Worryingly, 34% reported that graded exercise therapy made them worse."

https://www.bbc.co.uk/news/health-12493009
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Robert 1973 said:
I agree that:

- The statement is a welcome step in the right direction
- It is a mistake to endorse BACME

I would add that it is possibly unwise to endorse any part of the NICE Guideline at this stage (even a part which is acceptable).


In the past I have asked @Action for M.E. to acknowledge its mistakes and apologise. I thank Sonya for doing this. However, I would have liked her to apologise to everybody for the harms has AfME caused rather than only to “those who feel that [AfME] have caused harm”. This may seem pedantic but:
1) People will have been harmed who are unaware of the issues and AfME’s involvement. They deserve an apology too.
2) It is important for AfME to acknowledge that harm that has been caused, not only that people feel they have been harmed.

Thanks to AfME for listening. I hope this will be a on going process.
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One thing un said is, for all his obvious faults with PACE, sir Peter spencer in 2011 did ask the MRC to continue ring fenced funding until the field was established. He said the amount put in so far was tiny compare to need. They refused and since then, including under Sonya, that hasn’t been asked again until recently. I agree significant biological research funding from years ago could have put us in a different place now.
 
Lucibee said:
I don't think that's fair. They've always disputed the PACE trial's findings.
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Yet it took considerable pressure to get to todays statement. Not science.
They play both sides with statements like "Some people tell us that they find GET and/or CBT useful" then mentioning criticisms. There are other examples but this one is off the top of my head. Playing both sides doesn't make for accuracy, facts make for accuracy.
Play me once shame on you, play me twice shame on me...
 
This looks like a major turn around.

I note they say they will review their resources and information. I hope that will be done very quickly - they have a responsibility to patients to withdraw immediately any information on their website, training for doctors etc that does not reflect this new approach.

@Action for M.E. please convey my thanks to AfME for this significant turnaround. And please also pass on my concern about the statement that review of materials may take some time. I agree that it's important not to rush to rewriting everything and get it wrong again. But I think in the meantime any materials that are dubious should be withdrawn . Better no information than incorrect information.

I also share the concern expressed above about the endorsement of BACME. They are far from perfect - including for example having one of the worst proponents of the BPS approach as a speaker at their recent conference.
 
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