Sonya Chowdhury's
response to the complaint looks good and I agree that AfME have better things to do now than deal with this complaint.
But, I do note, clicking through to
the AfME page about the PACE trial, that it could be a lot better. It still gives an impression of some fence-sitting. Perhaps the page could be reviewed in the light of the new NICE guideline and re-written? Mentioning that the PACE trial and other trials of CBT and GET were rated low or very low quality by NICE would be good.
Some examples of the current problems:
Under a large orange heading 'What did the PACE trial find?' there is this
Findings published in 2011 indicated that patients treated with CBT and GET (alongside specialist medical care) experienced moderate improvement in self-rated fatigue and physical function, more than those who used adaptive pacing therapy or specialist medical care alone.
Follow-up results published in 2013 indicated a 59 to 61% improvement, and 22% recovery, for patients who used CBT and/or GET compared to adaptive pacing therapy and/or specialist medical care. It should be noted that "recovery" did not mean that the patient returned to the levels of health and fitness they had before they were diagnosed with M.E.
There is no need to give the percentage improvements and recovery in the second paragraph. The first paragraph has already said that the trial found 'moderate improvement'. I think there is a problem with how the percentages are presented, as the improvement and recovery rates for adaptive pacing therapy and/or specialist medical care are not given for comparison. Many people reading it will assume 22% of people recover compared to no recovery without CBT and/or GET. Later discussion does not give the reworked improvement and recovery rates in percentage terms.
These cognitive responses are associated with unhelpful behavioural patterns, including avoidance of activity or all-or-nothing behaviour – a pattern of excessive resting alternating with pushing too hard or being overactive when well.” An example of a “fear-avoidance belief” is given as follows: “I am afraid that I will make my symptoms worse if I exercise.”
However, studies have demonstrated that even mild exercise can provoke symptoms in some patients – so fears about the consequences of exercise are well-founded.
The objection to CBT seems to be mostly that negative impacts of exercise can be real, rather than 'CBT doesn't work'. The problem with that is that it leaves lots of scope for clinicians to say 'oh, of course we work collaboratively with the patient to have them exercise in a way that doesn't create negative impacts'.
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
Little is said about the fundamental problem of subjective reporting in an unblinded trial where treatments aim to achieve a change in the way participants view and talk about their symptoms. In contrast, there is a great deal written about various definitions of ME/CFS.
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.
This is sort of a 'I'm sorry that you are upset' apology, rather than the 'I'm sorry that we contributed to the harm' apology that is required.
We fully support treatment approaches which:
- aim to reduce and stabilise symptoms before any appropriate increase in activity levels is attempted
This sounds a lot like AfME suggesting that an increase in activity levels is a treatment approach.
recruitment of the review team, including consumer authors; this includes Prof Julia Newton, and her role in this will be undertaken independently from her work with us as our Medical Advisor.
This relates to the Cochrane review. I'm not sure if Prof Julia Newton is still an AfME Medical Advisor, but Prof Newton's ongoing support for a treatment approach that is GET in everything but name has been established.
This post has been copied and some of the discussion moved to this new thread:
UK Action for ME - policies, actions and publications - discussion thread