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

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

https://www.actionforme.org.uk/news/pace-trial-and-behavioural-treatments-for-me/

 

https://twitter.com/user/status/1034736087430823936

 

Hope I am not being naive, but this reads as a very positive step forward by Action 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:

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.

 

I think this is the best thing about the statement. Can PACE claim to have any patient support now?

 

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.

 

Just recently they were defending the indefensible now they have seen the light...
Sure.

This sounds like damage control.

 

They will need to be judged by their future behaviour, not their words.

 

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 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.

 

I don't think that's fair. They've always disputed the PACE trial's findings.

 

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.

 

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...

 

I found Hannah Fry's programme on game theory (BBC4 yesterday) very interesting in that regard...

 

I don't know of this program, can you tell us more?

 

There's more info at the link, but in summary, being in perpetual conflict benefits no-one.

 

My bad, i didn't realize there was a link in your reply (f lux software orangeing out the screen)

I agree but trust is earned, not given away. I look forward to more then the first step in that journey.