IiME letter to Mark Baker (NICE) re: CBT & GET as recommended treatments

It would help matters if someone actually wrote the definitive guide to GET. These 'does GET actually work' conversations will never get anywhere because there is no actual definition of gold standard GET.
We might as well discuss fairy to pinhead ratios for optimum dancing.

 

That's also my experience with CBT at CFS clinics. It was just about management, support, and any other issues I wanted to talk about. The psychologist that I saw told me that CFS was physical, and the CBT was about managing it.

 

Yes it would but I suspect that is why the BPSers have been so very deliberately slippery with terminology. To make their brand of treatment more acceptable.

I also suspect that is partly down to the very good intentions of some therapists at some CFS clinics. They deliver the appropriate treatment for the patient while letting the powers that be thinking they are delivering something different. I can see why they would do it but it means the powers that be then think PACE style CBT is helpful.

 

I had CBT at a NHS chronic fatigue clinic but it was not proper CBT.

I have had experience of CBT ( nothing to do with ME) where challenging beliefs was an essential part of the process but the CBT at the CFS clinic was not like this at all.

I would describe it as a sort of mix between counselling and psychotherapy. As far as I remember, it consisted of 4/5 sessions of addressing general stressful issues ( wider family matters), nothing to do with changing my beliefs, or even addressing my adaptation to ME.

At that time I was doing well with ME, and had adjusted myself during the lengthy wait for the appointments.

EDITED to add: just for clarity, I think the process of adjusting to ME is an ongoing one, not achieved as a one off event. The illness changes, we age, so I see adjustment as ongoing. Ten (or 32 years in depending on how the start of my illness is defined) years in, and I am in a different place from 8 years ago when I had so-called " CBT ".

 

I'm not sure the form actually matters - hardcore GET (ignore symptoms) obviously doesn't work, but neither does symptom-sensitive GET. The latter simply doesn't cause as much damage. We need a higher standard for what "works", beyond "doesn't make me sicker".

Even pacing doesn't result in a cure, recovery, or improvement of the disease itself - it just reduces exacerbations of symptoms, some of which may have been constant.

 

There are very few specialist centres in Scotland. East Lothian Council run a service which they advise ( vocuferiusly) they see people doing very well with GET. I do wonder the reliability of original diagnosis. This is a joint funded operation.

Edmesh are the local support organisation and it may be worthwhile putting a few feelers out via them.there is a local MEA rep in Edinburgh.

Emma Shorter who coordinated the million s missing campaign went from walking to wheelchair bound under the specialist clinic in Edinburgh ( BPS school), and is trying valiently to get GET dropped.

On west coast we have absolutely nothing. And noone " with an interest".
I was viewed with concern by paediatrician when my daughter could not attend camhs or school, and sleep did not respond to " shifting in 3 days".
Scottish guidelines are informed by NICE, but there are none specifically for children.

 

It is interesting that they recognised that some treatments might be contraindicated. Why would CBT be contraindicated? And presumably SMC and pacing would not be so it would have been GET? That sounds pretty much like excluding anyone with PEM. A lot of those refusing to be assessed might well have had PEM and realised they were not going to want to chance getting GET.

Maybe what is needed is an agreement that PACE does not apply to people with PEM.

That leaves the earlier Oxford studies. I have not been through these yet in detail but my impression is that the only truly objective change may be in cardiovascular fitness in one group (?reduction in heart rate on standard exertion). That may be objective but it is not a measure of improvement in ME/CFS. It is a bit like the CRP going down on an IL-6 inhibitor. IL-6 inhibitors block CRP production regardless of whether or not they do anything to the disease that might have put the CRP up. So improved CRP is not a measure of improvement in this case.

 

Wouldn't PACE be ruled out as evidence anyway, on the grounds that it is scientifically unsound?

 

You'd need to be sure they had ME in the first place if they truly recovered with LP.

 

This seems to me to be inexcusable. 'Not my problem, mate', despite being an OT. This is where the real meaning of 'multidisciplinary team' becomes clear - passing the buck round and round team.

 

I had a relative in hospital and she was passed from the original OT (really helpful and understanding ) to a different OT (who wasn't really interested at all) on discharge from hospital.

 

@Trish

I may be out of date but I think Social Services Departments have a responsibility ( have forgotten the Act) for assessing and fitting " aids and adaptations" for people with disabilities, and they do this via an OT assessment. I think it's a means tested service.

The CAB is a pretty generic source of advice on where to go for help, and may be able to advise on this.

 

I know of one case where someone had the local authority come into their home and remove all the aids that she had previously been assessed as needing. Why? They were suddenly advised that the use of aids was not advised for people with ME. By providing aids they were contributing to her illness.

ETA - this happened in the last year or so . Fairly recent.

 

One form of occupational therapy is rehabilitation, which of course is not appropriate when you have an incurable disease and you need adaptation instead.

I think what we really need is to keep all (bio)psychosocial practitioners far away from ME/CFS patients. Even if counseling is needed, it's better off coming from a shameless dualist who isn't going to try to cure your biomedical disease in the process of treating depression or other issues.