NHS ME/CFS clinics asking patients for feedback RE new guideline and future changes

I saw this on Reddit. Someone had posted saying they received a letter from their ME/CFS clinic, were dreading what it might be, but it turned out to be an invitation to be part of a patient focus group to provide feedback on the new NICE guideline—which they were happy about.

I asked the postee if I could see the letter, which I've attached.

Another user replied that they had received an invitation from their clinic.

I would be interesed to know if anyone here on S4ME is currently attending a clinic, and has received a letter of this nature.

 

Interesting. Rejection of the CBT/GET approach will lead to efforts to come up with something better and this could be the start of it. Assuming this isn't an attempt to manipulate patients into saving CBT/GET.

 

Looks like this is the Reddit thread in question.

Copy and paste

Code:

https://www.reddit.com/r/cfs/comments/ofuupg/my_mecfs_clinic_made_me_cry_today/

 

I note that they only want to use patients and carers that are currently active within the service (patients who are currently being indoctrinated in BPS dogma). I wonder how transparent the selection process will be and whether there will be any bias in favour of those who are considered to be likely to tell them what they want to hear.

It would much more useful for if this was being done by independent assessors with no conflicts of interests, with focus groups that included patients who have been discharged by the services and those who have dropped out.

 

Yep. Also, the clinics—as far as I'm aware—lack any sort of central (national) organisation. The NICE guideline and BACME are the main common threads. I would be interested to know whether this sort of feedback exercise is mandated within the NHS for any new/revised NICE guideline, or whether this is limited to a small number of clinics and has perhaps been prompted by BACME.

 

A second letter, from a different postee, but from the same clinic (which means I'm not sure how widespread this feedback exercise is).

 

Wasn’t there a previous thread here about an online questionnaire that turned out to have been put out by a specialist service aimed at their current caseload that seemed to be fishing for support for CBT/GBT?

 

One interesting point, in a further comment down OP mentions that this clinic actually seems decent, is not pushing GET or anything like that. Doesn't seem of much help but not being bad is almost success here.

Hopefully it isn't just the "good"/better clinics doing that, they are the ones with the least need for change. Which would be fitting but whatever.

 

A question has gone out to my local group to ask if anyone attending a local clinic has seen an invitation like this.

 

I don't think this is unusual now. There's been a gradual move away from GET and in some cases ME-CBT.

 

@Suffolkres might know more about this?

 

I’ve been offered an appointment at a cfs clinic but I’m thinking this is a place best avoided still.
I’m very sceptical that much will change,I can’t see them discussing biological aspects seriously with anyone and how are they going to unlearn on the spot all that they have been taught,I’d like to be wrong and may have to go there anyway.