Forward-ME Group Minutes - 13th March 2019

Agenda

1. Introduction and Apologies
   
2. Introduction of Professor Helen Dawes’ Research
   
3. Discussions and questions relating to survey results
   
4. Minutes of meeting held on 21st November
   
5. NICE Guideline Development Group progress
   
6. RCGP conference report and future arrangements
   
7. DWP, IAS, Capita, Maximus
   
8. Research
   
9. IAPT and other business

http://www.forward-me.org.uk/13th March 2019.htm

 

Isn't Davie consistently appalling?

 

I had not realised this. Wow! How long has Carol been in this position? And MS had the temerity to accuse her of behaviour unbecoming to an MP because of her debate, as if that was going to scare her off. In reality I'm guessing he just p*ssed her off, and if anything strengthened her resolve to fight for the rights of pwME.

It is unclear here whether the CBT relating to the 41.5% is CBT-proper, or CBT-a-la-GET. I'm guessing that even the latter variant must have a supportive component in it, though not sure. I have no problem with truly supportive CBT, and may well help improve the mental health of those pwME who also have comorbid mental health problems; in which case any relevant NICE guidelines would cover, and not the ME/CFS one. But as Charles Shepherd says, it is crucial to clarify unambiguously exactly what is what, to avoid conflation and spurious interpretations.

 

" Dr Charles Shepherd drew the group’s attention to an important statistic on the executive summary – that 41.5% of respondents reported that their mental health had improved, following CBT.

In response, the Chairman explained that she had recently had a discussion about CBT with Dr Paul Chrisp concerning the two types of CBT which are being used; one of which is a directive and the other supportive.

The former assumes that symptoms are psychological and the patient just needs to pull themselves together with persuasion; the latter recognises that the patient is physically ill and helps them to manage their symptoms.

She suggested that it is important to distinguish between the two and consider the relative success of each. "

eta: also, I wish they wouldn't mix 'mental' and 'cognitive' problems.

 

I didn’t have much or any CBT when I went to the CFS clinic, although the OH was very supportive and seemed to be understanding. She wove a lot of pacing into Her advice. She also made no guarantees about recovery, just said if it was going to happen it would happen in the first year (I’ve often wondered where that particular fact came from?)

Looking back it is difficult to tell whether I was being manipulated or supported ...I did after all have advice on GET from the same person?

I think dropping the term CBT altogether and calling it emotional support or well-being councilling or somesuch phrase would be a cleaner break rather than leave the door open for abuse by keeping the term CBT. I mean what is it anyway? Does it actually have a definition or standard for practioners to work to?

If it is so generic that practioners just have a license to do what they want (which is my suspicion) then probably best not to even give it credence as a treatment or care practice at all.

 

CBT seems to be a general term that covers at least 15 different types of psychotherapy but is not the benign 'talking therapy' that most people seem to think it is. For IAPT they tend to use 'high intensity CBT'.
In this research paper they looked at CBT (HI and LI) and counselling:
https://bmcpsychiatry.biomedcentral.com/articles/10.1186/s12888-018-1899-0

I haven't looked but has any similar review been done re MUS patients?