I thought that the statement from Sonya was pretty good, but everything else was pretty bad.
It seems like Action for ME have realised they've made mistakes, but they don't really understand why. I think that there are entrenched problems at Action for ME which mean that it is not capable of commenting competently on research and treatment issues.
I think that it's a mistake to focus on the underlying models of CBT/GET as a problem - if therapists claimed they had different underlying models, would that suddenly make the treatments any better?
the PACE trial did not use objective measures to assess the effectiveness of CBT and GET, but instead relied on subjective measures, ie. reporting by patients, which can be unreliable
They did use a fitness test, 6mwt and employment data.
changes to the recovery criteria part-way through the trial meant that “it was possible to score below the level required for trial entry, yet still be counted as ‘recovered’” (
Wilshire et al, 2016)
Only for SF36-PF and CFQ. That was all the was needed for the 'recovery' criteria used in the 2011 Lancet commentary, but the 2013 Psych Med also had additional requirements of a self-rated CGI score of 1 or 2, and a requirement that participant not fulfil every aspect of the trial entry criteria.
The full sentence from the Wilshire abstract: "Further, the final definition was so lax that
on some criteria, it was possible to score below the level required for trial entry, yet still be counted as ‘recovered’." Why didn't they get this statement checked by someone like Wilshire?
The embrace of BACME is ridiculous.
BACME say "NHS M.E./CFS services should advocate collaborative work, patient-led goals". Apparently Action for ME "fully support this approach".
How can that approach be applied when patients are being misled about treatment efficacy by poorly designed trials with spun results?
This was BACME's statement on PACE:
British Association for CFS/ME (BACME) Statement on the PACE Trial results
The National Institute for Health and Clinical Excellence (NICE) has previously recommended Graded Exercise Therapy (GET) and Cognitive Behaviour Therapy (CBT) as treatments for mild and moderate categories of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) on the basis of somewhat limited evidence in the form of numerically small clinical trials.
The PACE Trial represents the highest grade of clinical evidence – a large randomized clinical trial, carefully designed, rigorously conducted and scrupulously analysed and reported. It provides convincing evidence that GET and CBT are safe and effective therapies and should be widely available for patients with CFS/ME as per the NICE guidelines (
www.nice.org.uk). Adaptive Pacing Therapy (APT) has not been shown to be effective as delivered within the PACE Trial, but this may differ from activity strategies promoted by CFS/ME services nationally. This trial shows that approaches aimed at staying within limits imposed by the illness are less effective than those that test such limits.
In addition to these general benefits, research has shown that some people with CFS/ME can feel much better, and increase their activity levels, by gradually increasing the amount of exercise which they do. A large research trial (The PACE Trial, White 2011) has shown that people with CFS/ME who had support from specialist therapists to gradually increase their exercise levels were more likely to report improvements in function and symptoms at the end of the year-long study.
BACME March 2011
https://web.archive.org/web/20120830075256/http://www.bacme.info/aboutbacme/pace_trial.html
This is how the PACE team described their work with BACME under 'engagement activities':
Description: Clinicians' conferences
Form Of Engagement Activity: A talk or presentation
Part Of Official Scheme? : Yes
Type Of Presentation: Keynote/Invited Speaker
Geographic Reach: National
Primary Audience: Health professionals
Results and Impact Several: talks at regional meetings of BACME, eg in Bristol, Newcastle, London, and keynote speaker in March 2012 for their national biennial conference.
Good feedback from clinicians and reports of implementing changes to clinical practice
Year(s) Of Engagement Activity 2011
https://gtr.ukri.org/projects?ref=G0200434
Has BACME ever spoken out about the way results from PACE were spun? Or apologised for their own promotion of these results? From what I've seen, it's the opposite.
Using terms like 'collaborative' and 'patient-led' might sound nice, but they depend upon ensuring that claims made by medical professionals to patients are reasonable and founded upon a careful and critical examination of the available evidence. Misleading information about treatment efficacy destroy the ability to have a genuinely collaborative and petient-led approach to treatment, but no-one at BACME seems concerned about this.
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.
It wouldn't amaze me if this was part of a move by BAMCE to re-position themselves, distance themselves from PACE and change the way that they use language, while making fairly minimal changes to how they treat patients, maintaining their positions and careers.
