A while ago A4ME joined with Westcare counselling services, which was a CBT counselling service. I noticed this because I was living in Bristol at the time and had some counselling from Westcare as well as some contact with A4ME.
Westcare counsellors helped me to understand that I couldn't fight the illness and had to rest and pace which was realistic advice and a constructive use of CBT.
My subjective impression of A4ME on the other hand was that it felt a little cliquey and I felt like an outsider, as though I was being "handled" by an in group rather than making an alliance with an organisation run by PWME for PWME which is the kind of feeling I get from MEA.
I have some experience of working in a charity and I know the internal politics can get surprisingly hairy. So I concluded A4ME had corporate culture type issues and was probably being run by a mix of people some of whom had a slightly cult like dynamic going on due to the origin of the organisation as a project of Clare Francis, who used her fame to get it started.
So I noticed the merger and the subsequent decline of patient centered services from the new A4ME entity. I tried some of the A4ME counselling and found it to be of a different quality, without real purpose, just talking therapy for the sake of it as opposed to an educational process focussed on ME. Later even this service was closed down. I still dont understand why A4ME merged with a counselling organisation and then stopped counselling but I felt the net result was to remove the good advice Westcare had offered from the CBT process and shut it down.
I think what may have happened is that people complained that CBT in general was not the answer to ME but in the process the baby got thrown out with the bath water. What they could have done is reclaim the night and develope good CBT to supplant bad CBT. Because CBT cannot cure ME but it can help you adjust to life with ME which is a very different proposition. So I would say that was a slightly headless chicken type move from A4ME but they decided to treat CBT as toxic. They do now apparently have a mentoring program of some kind but I have no experience with that.
I noticed A4ME trying to take a place at the table with NICE and MRC processes which the BPS lobby are trying to capture and monopolise, so they have been vying for a place as a stake holder. Which in principle is great and initially more funding was made available but most of it went to PACE which is entirely counterproductive BPS fakery and A4ME have not been able to counter the BPS proponents by engagement because the BPS lobby are well entrenched at NICE and the MRC.
A4ME is currently touting Peter Whites study on the neurophysiology of pain as one of its research projects funded by CMRC.
https://www.actionforme.org.uk/reso...he-neurophysiology-of-pain-in-me-study-about/
This is a very wrong move IMHO and is not going to end well. White was a PACE author and it is likely he will try to use this neurological angle on nociception in a similar way to BPS to try to suggest a discontinuity between the sensation of pain and its cause, i.e. that the illness is not what it feels like as a prelude to saying people can be forced to do what makes them feel iller and all they need is a couple of neurofen, which is the antithesis of proper pacing advice and ignores the immunological basis of ME but is very much in line with the aims of BPS which are to show in a court room that PWME dont need support money spent on them because they are delusional and their problems can be wished away.
We need to lobby. We need to educate the health secretary and prospective future health secretaries about the fact there are two teams and that one of them, the BPS team, is blagging. One of the best ways to do that is to blow PACE out of the water and embarass everybody who had a hand in it and I think that this is a situation where advertising our grievance by protesting the controversy is helpful. This is why I am very grateful for Dr David Tuller's writing.
I think time will show A4ME's collaboration with White as a disastrous misstep.
A way to lobby which will capture the interest of the media is to demonstrate a narrative by having a very public showdown over PACE and then shortly after that a "further development" where all the patient lead organisations protest by suspending their involvement in the CMRC on the grounds they cannot work with BPS proponents responsible for the unethical PACE results.