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

Status
Not open for further replies.
Suffolkres said:
:hug::giggle::nerd: Ah that is very helpful and explains a LOT! I have 2 pedantic men at home both with moderate to severe at times, ME.

They often do not register the first thing I say. so miss both context and really meaning.

They then switch off (due to my chatter and their brain fog)....

Then we argue for the rest of the day as they say I didn't tell them a critical thing...

" Well you didn't say, or you didn't tell me THAT " when I hav,e but it hasn't registered.......

Found best way is to text them pr email even if we are sitting together, then it's less stressful!
At least I have an audit trail then to back me up!!
Click to expand...

Sounds awfully familiar :D .
 
Suffolkres said:
Forward ME FINAL STATEMENT FOLLOWING THE NICE ROUND TABLE ON ME - Oct 22nd 2021
https://forward-me.co.uk/news-updates/
Click to expand...
"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.
 
Last edited:
Sly Saint said:
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.
Click to expand...

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.
 
Jonathan Edwards said:
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.
Click to expand...
So this is perfectly OK?

CBT for CFS/ME
What follows in the subsequent sections is a detailed description of the components of CBT for CFS/ME. As a preface to this, here are some ways in which CBT for CFS/ME may be different to CBT more broadly.
Click to expand...
Exploring beliefs about illness and recovery
It is particularly important in CBT for CFS/ME to give the young person space to recognize and become familiar with their thoughts and beliefs about CFS/ME.

The recovery journey in CFS/ME is certainly not something done by the young person alone but with support of the therapist and the wider, multi-layered systems around them. Therefore, eliciting and exploring all beliefs held within these systems is crucial. It might be for example that a parent feels helpless or doubtful about the prospect of the young person’s recovery; this is really important to explore and address.
Click to expand...
Learning to manage setbacks
CBT for CFS/ME has a central focus of building a young person’s skills in recognising, understanding, and managing their symptoms and experiences. These skills are key in each stage of the recovery process, including the management of flare-ups (temporary recurrence or worsening of symptoms) or other setbacks during the recovery journey.
Click to expand...
Whereas the trigger or onset of CFS/ME can be unclear, we know more about what can keep CFS/ME going. The evidence points towards behavioural maintenance factors (activity patterns, sleep) and cognitive maintenance factors (thoughts and beliefs about fatigue). And this is where we can helpfully apply evidence-based treatments, including CBT, to enable the young person to make changes and work towards recovery from their CFS/ME.
Click to expand...
Recovery in CFS/ME
The good news is that recovery rates from CFS/ME in young people are very good. A Dutch study looking at recovery found that approximately 85% of young people were recovered (absence of severe fatigue) at 1 year after starting active CFS/ME treatment (internet based CBT for fatigue). This data can be compared to a 27% recovery rate for those who were not in active treatment, after 1 year (see Nijhof, S. L., Bleijenberg, G., Uiterwaal, C. S., Kimpen, J. L., & van de Putte, E. M. (2012). Effectiveness of internet-based cognitive behavioural treatment for adolescents with chronic fatigue syndrome (FITNET): a randomised controlled trial. The Lancet, 379(9824), 1412-1418).
Click to expand...

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."
 
Last edited:
Sly Saint said:
So this is perfectly OK?
Click to expand...

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.
 
Jonathan Edwards said:
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.
Click to expand...
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'?
 
Sly Saint said:
"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."
Click to expand...

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.
 
Last edited:
Sly Saint said:
"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.
Click to expand...

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

Jonathan Edwards said:
I personally would have preferred to see no mention of CBT but I was not on the committee.
Click to expand...

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/
 
Arvo said:
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.
Click to expand...
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.
 
Last edited:
Simbindi said:
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/
Click to expand...

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.
 
Simbindi said:
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.
Click to expand...


This should work:

Code: 
https://letstalkaboutcbt.libsyn.com/cbt-for-chronic-fatigue-syndrome
 
Status
Not open for further replies.
Back
Top Bottom