Publication of the NICE ME/CFS guideline after the pause (comment starting from the announcement of 20 October 2021)

Sounds awfully familiar .

 

I love the description of brain fart!

 

"There was broad support for the recognition in the new guideline that CBT does not cure ME. This counters past hypotheses that ‘abnormal illness beliefs’ underpinned the disease. While CBT may help some ME sufferers to deal with the distress that can accompany the disease, it is not curative."

this still doesn't point out that the CBT or CBT-F (for 'fatigue') used in clinics for ME/CFS is not the same as for other conditions apart from those who have 'fatigue' (ie Crawleys group and Chalder are using it) and that a key component is encouraging increasing activity. I hope this distinction is more clearly explained in the final version of the new guidelines.

I don't know for sure but given that many ME/CFS services and fatigue clinics are now also 'treating' LC patients, I imagine that the CBT they are offered is the same ie CBT-F.

 

The ultimate in recycling!!!

 

I don't think it will be.

I agree that a clearer distinction would have been helpful However, I suspect that getting that through the committee with a clinical psychologist used to the old ways on it may have been a bridge too far. I don't know the story but I suspect that the guideline as it is now includes compromises needed to avoid the committee fragmenting and minority reports coming out.

It might seem in hindsight easy enough to be clear about the CBT distinction but as soon as you move away from CBT as defined in PACE there is no evidence for anything so arguing for one thing rather than another has no purchase.

 

So this is perfectly OK?

https://www.ruh.nhs.uk/patients/ser...rofessionals/CBT_for_CFS_Therapist_Manual.pdf

eta:
"The aim is to continue gradually increasing the baseline activity level in this step-wise fashion until the young person can comfortably manage at least 8 hours’ high energy activity per day."

 

No, but if it is accepted that CBT has a place I think it would have been very hard on the committee to argue more precisely for what was not to be allowed.

I personally would have preferred to see no mention of CBT but I was not on the committee. There is a wide range of opinion. A lot of members here are quit keen on CBT under certain circumstances.

 

I agree with the use of 'supportive' CBT if someone wants it, but this type of CBT (as in my last post) talks about it as a means of 'recovery', so is this not the same as 'curative'?

 

But the reason my activity level is so low is because I had to reduce it more and more just to be able to do anything at all in a sustainable manner.

This happened in a stepwise process by the way. There was no infection that made me bedridden but a slow and insidious process over years with many, many crashes and eventually having to make the horrible but ultimately good decision to stop trying to live a normal life. This may have saved my life.

There isn't really a choice. I could try to do more but it would not work for more than a short time. It's impossible to live with constant crashes from an organizational perspective, and would also be unsustainable level of suffering.

By doing less at least I get some stability and reduce symptoms to a more bearable level. When my ability to do more improves, my activity soon increases. There doesn't seem to be a good reason to think that I'm generally not doing enough, and some reasons to think I tend to do too much (for various reasons, some of which unrelated to psychology).

Nonacceptance that patients are ill does serious harm by the way and these silly ideas about patients being disabled not by a biological process but by fears, perpetuate and reinforce this nonacceptance and indeed are one of the ways this nonacceptance is expressed. People do not throw away their life over irrational fears.

 

I think a sensible reading is curative = aiming for recovery.
I think that is clear enough in the guideline for anyone with sense but...

 

I understand and agree that you'd like to have more emphasis on how it is no longer advised to apply CBT in the way it is done now, with more detail on the actual content, like how the behavioural part is graded increase in activity and the cognitive part is influencing patients to ignore their symptoms so they keep with the activity programme. (And how those things are probably not advised anymore in the final guideline.)

However, I think it's an unfortunate misunderstanding that there seems to be the idea that there is a "good", different CBT versus just "ME-CBT". (From the start of it's solidification in the UK by UK psychiatrists, CBT for health anxiety and supposed hypochondriasis, which BPS ME-CBT is based on, has always been a part of it.) The structure, wheter it's for depression or CFS, is always the same*, it is which behaviour and cognitions are deemed wrong/unhelpful/maladapted that are the difference.

(*possibly the only difference is that CBT-manuals for CFS or MUS, at least the early ones, elaborate on the basic CBT step of building a report with the patient with pointers on how to basically fool the patient into cooperation because otherwise they might not agree with the therapy)

I personally think that effective criticism tackles the content and structure of the CBT provided, instead of asking for a different "type" like that is where the difference lies. (With a little tweaking oldskool CBT can still be presented as "supportive". It has to be crystal clear which thoughts and which behaviour are aimed to be altered. And that there is no longer any misleading of the patient to get them to cooperate.)


I actually agree with

as I think that CBT because of what it is, it's core, aims, setup and structure, has no place in ME healthcare, and that help with coping with the illness is in far better hands and more effective in other psychotherapy branches.
Of course people should be free to try it, with informed consent, but I don't think it should be mentioned in a guideline as a "helpful" approach, especially if no other psychotherapeutic options are mentioned alongside it. (Really, does it even have a long and well-documented history in being succesful in helping chronically ill people cope? Because that is not what it was developed for.)

 

I think there is the historic problem that ME/CFS has been treated like a mental illness, where the 'recovery model' is the norm, even for life-long disorders like bipolar disorder and schizophrenia. This was also used by people like Crawley to justify that 'recovery' in 'CFS' is just minor improvement or better management of symptoms, or can mean whatever you want it to mean...

https://www.rethink.org/advice-and-...ental-illness/treatment-and-support/recovery/

 

Here Trudie Chandler explains what CBT for 'CFS' is:



Edit: For some reason copying the web link automatically just brings up the podcast, whereas there is a transcript on the webpage itself. I have no idea how to get it to link to the full webpage. Sorry.

Edit 2: See posts below for the link to the webpage with the transcript.

 

I'm not sure if the recovery model being the norm is a historical thing? That link is present-day and for me illustrates how much this ideology, which needs the bending of the meaning of words to make the illusion fit reality, has taken over.

The original, early day expectation (or sales pitch) was for CBT to work for ME because there really was no "there" there, just a mix of depression, anxiety, somatization and deconditioning.

 

This should work:

Code:

https://letstalkaboutcbt.libsyn.com/cbt-for-chronic-fatigue-syndrome

 

How did you do that?

 

The podcast and transcript are also on the BACME site, here:

https://uk-podcasts.co.uk/podcast/let-s-talk-about-cbt/cbt-for-chronic-fatigue-syndrome

 

In the drop down 'insert' box from the toolbar there's a 'code' option that seems to stop a lot of the forum's automatic features. It's under the 'quote' and 'spoiler' options.

 

I achieved what Ben has without any outside help, had I also had a desk job like Ben as opposed to my very physically demanding job in a factory I dare say I could also have got back to doing some work.

 

So if this type of cbt is still in the guidelines, then GET continues under another name. So what have we achieved?