I think NICE have to have these people at these events otherwise it isn’t covering all stakeholders hopefully their eyes are actually being opened and they will take a different perspective back to the services they work in. The good thing is the tide is turning and even if they still believe in the BPS model they are now constrained in being open about it and not prepared to argue for it in the face of alternative experiences.
I very much agree with this analysis.
We are all going to be suspicious, like
@Esther12, that the same psychiatrists and their therapists will continue managing people much in the same vein for the foreseeable future. However, I see no possibility of changing that without giving NICE the motivation to axe all ME services as non-cost-effective and provide nothing. These people have to be there, not just as stakeholders but as the people who are at present the justification for continuing to have any service at all. There were also infectious disease/immunology specialists present but I am not sure just how different their approaches are. What I think can be achieved is a shift in their mind set that at least leads them to question justifying what they do on the grounds of a CBT/GET centred model, or for the immunologists feel relieved that they do not have to pretend to be psychiatrists.
The whole process is going to have to be slow and move by stages and my thought was that we have managed to complete one stage. The people at NICE in charge of the guideline committee are not only fully aware of all the critique of CBT/GET but recognise its legitimacy.
The next difficult job is to prevent the guidelines slipping back to what they were before because it will be the line of least resistance for health care professionals involved in ME/CFS care. The committee has to be based on such professionals and is not going to vote for making all its members redundant. A face-saving compromise has to be found that at least sets in stone the fact that there is no reliable evidence for the value of CBT/GET.
The aspect of the meeting that for me was less good was that we are still not singing by the same hymn sheet. There was patient-led support for a 'multidisciplinary specialist team'. In my reckoning 'multidisciplinary team' epitomises the pass the buck attitude we are wanting to break down. What is needed is a service led by physicians who actually understand the scientific background and who are supported by perhaps occupational therapists and social workers to provide help with disability.
There was also a lot of support for paying less attention to evidence from trials and taking personal experience into account more - with the suggestion that different patients responded to different treatments. At the summing up our facilitator took this as the main message from stakeholders. But of course it plays directly into the hands of those wanting to keep CBT and GET on the books - the new guideline will say that these may be good for some and not others. What the guidelines should be saying is that there is no evidence for them being any good for anyone - based on formal trials. The only way to get CBT and GET removed from any actual recommendation is to say nothing is allowed unless there is solid evidence - which is the position for all other illnesses and should be the position for NHS provision.
Last time we were suspicious that the patient engagement exercise was window dressing. This time I got the impression that it is more than that. It is actually an important part of the new NICE ethos. It is seen as politically advantageous to be seen to be doing what the patients want. And for ME since nobody knows what to recommend I suspect it will provide a convenient means to give the impression that something has been achieved. If doing what the patients want means having woolly guidelines that allow some people to have this and others to have that then the CBT/GET people have won the day. The guideline will say that different people respond to different things and so CBT and GET should only be used for people who seem suitable. And the current guidelines already say that.
