If I may put a different slant on this topic. Whilst I totally agree with all the members above comments, I think there is some positives to be taken from these clinics.
After having a serious relapse around 7 years ago my doctor suggested I could attend a clinic that ran one afternoon a week for about 8 weeks. Bewildered by the catastrophic change in my health I pushed myself to attend. What it did give me was more of an insight into the illness and suggested ways of coping with it. Meeting other people on the course who were in the same boat so I did not feel so isolated. It got me out of the house with some effort.
I guess the downside is that once the course had finished, that's it, back to square one and totally forgotten about again. Also I am sitting on my bed in the middle of the day, 6 years on, no recovery, hey ho. Apologies if have veered off topic. The advice the clinic gave was I am sure well intentioned and the lady had had ME to some degree as well and was not completely recovered.
Actually, in my experience of being involved with a regional ME Charity for the past decade, what you describe can be a benefit of ME Clinics. Many people are struck down by ME and have absolutely no idea what is happening to them, to the point where they wonder whether they're going mad, when family, friends, Health Professionals and basically everyone around them either disbelieves or trivialises their illness. (I'm sure no one on here needs to be told this.)
When they finally arrive at the ME/CFS Clinic, they are met by sympathetic Health Professionals who've actually seen it all before and, importantly, believe that they are ill. They also meet other PWME and realise that they're not the only ones with this illness. Basically, it's a "port in a storm." This comes as a huge relief, which is bound to lessen the stress that they are experiencing , if only very slightly.
Unfortunately, what these unsuspecting patients don't realise is that these Health Professionals have been trained, as per the OP above, that this is a "false illness belief" and disastrously, many are made much worse by GET.
I remember attending a conference some years ago, hosted by the researchers who are now involved with the UK Biobank, and one of the researchers told me that they were horrified, when hosting a Conference specifically for Occupational Therapists, when the OTs said "But we HAVE a treatment for ME."
Naively, I asked my GP to refer me to my local ME/CFS service 11 years ago, when I first became ill. He said he was happy to do that, but he hadn't referred me before, because he hadn't had any good reports of it. (He's a very open, well-informed GP).
I was treated with great consideration during my appointment at the ME/CFS Clinic, but declined the treatment that was offered, as I'd already tried CBT privately, as I had been told that this was the only "treatment" that worked. (I was desperate. I threw myself into the therapy, but of course, it didn't make a blind bit of difference, in spite of me waking up every morning, if I'd actually managed to get any sleep, determined that it would have made a difference.)
I declined GET, because even in my ignorance of the facts, it seemed bonkers to me. Thank goodness I did refuse. I had to spend most of the time in bed for a few years, but this didn't mean that I didn't try to be active when I felt that I could. Over the years, these periods of activity have increased to the point where I can now walk up to 4.5 miles at a time, without payback at the same pace as my fit husband. It took years of NOT pushing myself to reach this stage and I still have to pace myself and take my time in the morning, but if I do that I can go through until midnight feeling fine. If I don't do that, my health soon deteriorates. I realise that in the grand scheme of things, I'm extremely lucky.
Although I know that the NHS Clinics obviously work to NICE Guidelines, I was still, strangely, shocked when I spoke to a young woman at a local Support Group event only this week, when she told me that her OT at the local NHS ME/CFS Service has told her to walk a certain distance, outdoors, everyday and to complete the whole distance, no matter how bad she feels doing it. Thankfully she realised in time that this was just making her worse and was not the way to recovery.
The whole NICE debacle is outrageous. God help us with the 3 Psychiatrists, 2 Neurologists, a Paediatrician and 1 Patient Representative on the GDG.
. Now how do I get published, can't be that difficult ....
