CBT for ME that is accepted by the community.

Trish said:
Making the economic argument for governments on PACE style therapy for ME should be very straightforward. Not only does therapy cost money itself, but at the end of treatment more patients were out of work and on benefits. End of story.
Click to expand...

Yea, from memory, @JaimeS ME Action said "psychological treatments don't work (i.e. to get people back to a normal life) so Governments shouldn't fund research into them ---". PACE was basically a waste of £5 million - that's UK tax payer money!
@MSEsperanza
 
I think these days there’s too much focus on CBT. I had generic low intensity IAPT CBT which I’ve said many times for me was a sausage machine experience. I have counselling I pay for from a counsellor who does person centred counselling which is a completely different experience. If only instead of widgetising psychological support and using it as a mass scattergun “panacea” the same funding was put into professional counselling for people who really need it with counsellors able to deploy various approaches depending on the needs of the client.
 
Jonathan Edwards said:
I spent my life explaining to people about their arthritis, what to hope for and what to accept as the natural path of their illness and what we knew about the best way to cope in terms of activity and work and so on.
Click to expand...

FMMM1 said:
So if the Government is funding psychological studies then are they focused on helping you to cope with your disabling fatigue or helping you to get back to a "normal life" --- if these psychological treatments accept that currently you cannot return to a normal life (biomedical science hasn't shown ways treat disease), and have valid indicators (assessing how well you are adapting to your altered life) - then that seems acceptable to me
Click to expand...

That's my point. At this moment when you step into an practice of a psychologist/psychiatrist it's a gamble if they know what this disease is all about.

They might know how to support you as a person but they do not know how to support you with this disease. Iatrogenic harm is therefore not an unlikely consequence.

It would be super helpful if there was some sort of guideline, model that would be of use especially for these practitioners.

I haven't read them thoroughly but I know there is the guideline for psychiatrists from 2005.



So I'm not suggesting we need CBT or psychological treatments perse but a good description for especially these practitioners would be helpful.

I also feel it would good to have some sort of alternative approach to the current harmful CBT. A supportive kind of course that knows all the ins and outs of the disease.
 
Grigor said:
Thank you. Yes indeed. That was my impression as well. It's a shame though. It would be helpful to have a clear "good" CBT designed solely for ME.

Do you agree that the EET is too much focused on behavior /pacing and too little on cognition/emotions?
Click to expand...

It seems to me that if someone is using an either / or statement (focus on pacing vs cognition/emotion) that they are being dualist.

Being human and focussing on pacing in my mind requires us to use cognition and emotions. The idea that we don't think or feel as part of exploring EET is patronising.

I would also suggest that CBT therapists (CBTists) have yet to prove that CBT is useful to most things they apply it to including cancer.

They (CBTists) behave as if they are the secret holders of arcane knowledge to be dispensed as temple priests. Yet what behavioural therapy is about (supposedly) is changing negative emotions /cognition that are not correct to the situation and replacing them with more appropriate ones.

I call this life and maturing. People do it all the time. And sometimes they do need help in specific circumstances occasionally. They don't necessarily need CBTists for that. The training for this 'expert' therapy also is rather brief considering it requires 'experts' to deliver it.

Also, CBTists are seeking to be an essential team member as if everyone (who finds themselves in some sort of chronic care) needs this kind of intervention. To me this suggests inappropriately positive cognition on the part of the therapists that is unwarranted. And it's again patronising.

They also seems to work from a premise that negative cognition /emotion = bad / positive = good. Which is not necessarily true.
 
Snowdrop said:
The training for this 'expert' therapy also is rather brief considering it requires 'experts' to deliver it.
Click to expand...

I agree with what you are writing and especially that it can be brief and delivered by experts. That's also what I've been thinking about for a while. Maybe some of the expert psychologists can publish a small dos and don'ts for these types of practitioners.
 
One critical reason to reject those models is that their proponents keep repeating that we can't prove that ME is not psychological and therefore making it valid. Which is an absurd statement, which they know very well is absurd, yet they repeat it anyway. People who aren't serious about what they say can be dismissed as entirely irrelevant with no afterthought. And then there's the blatant lying, of course. Lying to people will make them distrust you in any context.

It's the overall message I see, especially from friends and acolytes of the BPS brigades: you can't prove the negative, which, duh. Anyone with a basic understanding of logic and science understands full well that this is a deeply unscientific position that no serious person would take. And yet it is the overarching message: keep trying, you can't prove it wrong.

Any concern past this is irrelevant. People who make deeply absurd statements can and should be dismissed as cranks. It has nothing to do specifically with psychology. This is the same response that should be given to people who promote ghost-based theories. Ignoring quacks is not something that should ever be justified, these people have simply disqualified themselves from being taken seriously. That the rest of medicine does take them seriously is a massive breach of trust, showing nothing but disrespect. It's perfectly normal to be angry at people who show nothing but disrespect, it should not have to be justified either.
 
Grigor said:
I agree with what you are writing and especially that it can be brief and delivered by experts. That's also what I've been thinking about for a while. Maybe some of the expert psychologists can publish a small dos and don'ts for these types of practitioners.
Click to expand...

I find the problem is one of scale. They (health policy) want to be able to deliver this with the most economical way. That means usually groups or by telephone / internet and in as short a time as possible.

That nessecitates that the therapy is not based on what any individual person needs but they use and follow a script (this is the source of their expertise that they've been given training for). So there is no do or don't option really. None of it is meant to address an individuals particular concerns (outside the scripted considerations). If a therapist goes off script then they are now outside their zone of expertise.
 
Grigor said:
It would be super helpful if there was some sort of guideline, model that would be of use especially for these practitioners.

So I'm not suggesting we need CBT or psychological treatments perse but a good description for especially these practitioners would be helpful.

I also feel it would good to have some sort of alternative approach to the current harmful CBT. A supportive kind of course that knows all the ins and outs of the disease.
Click to expand...

I actually think this is the wrong approach. Health care professionals should not be advising patients on the basis of models or guidelines but on the basis of knowledge of evidence. That has always been the way doctors work until recently and it remains the way specialists work.

And why provide guidelines for practitioners who have nothing particular to offer? Why not ensure that people with the knowledge - who in this case might be doctors or nurses with specialist training - are given the job of advising?

I don't see the need for a 'course'. My arthritis patients did not attend courses. They talked to me repeatedly over many years and we dealt with issues stepwise when they were at the front of the patient's mind.

I don't know many health care professionals dealing with PWME but I do know a few. I know of one particular nurse with a huge amount of experience who talks to patients regularly either in a clinic or at home and who seems to me to work just on the basis of what we know from research and common sense. I suspect she is at least as good as a someone medically qualified. I know of clinical psychologists who see patients in clinics and I would not let them within a mile of anyone under my care because they clearly have no understanding of reliable evidence. They assume that they know that they can make people better without understanding that they are not in a position to know that without controlled trial evidence.

There is a strange divide between nurses and doctors on the one hand, who are people who use whatever methods they think are justified to help ill people, and 'therapists' on the other, who are often people who are trained to apply specific theories through specific techniques whether or not there is any reason to think they work. The distinction is not black and white. Occupational therapists fall somewhere in between and often on the former side.
 
If I needed to get a reality check for my thinking in my own life I would absolutely prefer the better choice (yielding a better outcome) of talking with someone with common sense then someone applying a 'theory model' to whatever I'm dealing with. Much more to say about that but it would be tangential.
 
Jonathan Edwards said:
ME-style CBT is busted.
Click to expand...
That may be true, but they just move on to some other therapy like Acceptance and Commitment therapy and pile us with blame when that doesn't help. Or include us in MUS and shove us into IAPT.

They'll find a way around it unless and until something really changes from the top, like NICE guidelines completely excluding therapists from the care model, and recommending a new approach paralleling the MS/Parkinsons' diseases approach with consultants and specialist nurses who understand the effects of PEM in ME.
 
Trish said:
That may be true, but they just move on to some other therapy like Acceptance and Commitment therapy and pile us with blame when that doesn't help. Or include us in MUS and shove us into IAPT.
Click to expand...

I don't see NICE approving ACT for ME or subsuming it under MUS any time soon. Yes the BPS people would like to continue their Morris Dancing but I think the music may have stopped in a way it has not before. I cannot predict what will come out of NICE but nobody can pretend any more that sensible patients, physicians and nurses do not exist.
 
mango said:
I can't help wondering if maybe "designed solely for ME" is actually part of the problem? Why not offer people with ME the same regular kind of supportive CBT that is offered to people with for example MS, stroke, SLE/lupus and other severely disabling chronic illnesses?
Click to expand...

Sarah94 said:
We're not psychologically ill, so why should we accept any form of CBT? CBT is based on the assumption that you have faulty thinking patterns.
Click to expand...
my bolding

Sarah94 said:
Same. For my actual mental health problems, I found self help books more helpful than IAPT CBT lol. But maybe the therapist that I got was just an idiot.
Click to expand...

Jonathan Edwards said:
and 'therapists' on the other, who are often people who are trained to apply specific theories through specific techniques whether or not there is any reason to think they work. The distinction is not black and white.
Click to expand...

All the above

CBT may have value when you are struggling with thoughts/beliefs that are not rational/logical, leading to unhelpful behaviours. PwME are just as likely to suffer from such ideas as anybody else and they can make your life miserable... For example 'being ill is weakness' or 'being too ill to look after my children makes me a terrible mother' or 'my worth lies in my achievements'.... etc etc.
If you're struggling with such ideas then usually a compassionate sensible person -friend/doctor/nurse can help.
But sometimes looking into where that belief/idea has originated can be helpful, because sometimes when your friend says 'look these are the reasons you are a good mother and what you think is wrong', their words just bounce off & have no impact & you remain distressed.

I think particularly with ME where best management is to go against all of society's general assumptions (eg people who push through are determined & tough, & those who stop when tired are lazy & undisciplined), it can be helpful. But the point isnt (like JE points out) specific theories/techniques, but a simple acknowledgement of reality and compassionate support.

I've had psychotherapy (humanistic approach - which isnt about technique but is an egalitarian approach, rather than a freudian 'therapist knows best' one) but it wasnt for my ME. It did help me manage my ME better though, because it got to the bottom of why on earth i detested myself for being ill, and why i believed that being ill & unable to 'push through it' was weak and pathetic.

She helped me to reveal those ideas as the crap they were by exploring with me what i felt, & why. It led to my being able to grasp that pacing wasnt giving in or being 'wet', but a proactive way of making the best out of the hand that had been dealt to me, which improved my management & therefore my QoL a bit.

None of my friends/family were able to do this because it required some really focused listening & an understanding of how ME can affect a person's life, & they all wanted to encourage me to do more so weren't really very helpful tbh. Had there been good info about the realities of the condition online/from Drs instead of the shite that is out there from official sources, they they perhaps could have helped me more.

So in terms of the OP, & whether there is a good 'type' of CBT.... In my view its not the type of therapy thats important imo, it's the beliefs of the therapist. Any counsellor/therapist who understands that ME is a seriously life impacting disease with all that goes with it, can give supportive listening & help you work through things.
But any therapist who believes that ME is caused by faulty/unhelpful thoughts & behaviour is going to be harmful, certainly emotionally (& PEM being what it is likely physically too) - in just the same way that seeing a 'grief counsellor' who believed it was possible to think people back to life & raise them from the dead would be harmful to a bereaved person - the techniques they used in the room would be irrelevant it's the underpinning beliefs that would be the problem.

I dont think PwME should be offered/given any kind of therapy as a matter of course, any more than PwMS are. Some people adjust reasonably quickly and well to being ill/disabled, for others they may need support - same as some people need support after bereavement & some dont.

Edited: to clarify in first paragraph. Changed 'CBT is valuable' to 'may have value'
 
Last edited:
JemPD said:
Sometimes looking into where that belief/idea has originated can be helpful, because sometimes when your friend says 'look these are the reasons you are a good mother and what you think is wrong', their words just bounce off & have no impact & you remain distressed.
Click to expand...

This is just my opinion but I doubt very much this applies to too many people. Although I do think at times people may need to be reassured by some of the things you mention. A good counsellor could help with anyone stuck in distress despite reassurance. I still don't think CBT is the most efficacious way to deal with this.
 
@JemPD

Also, I should note that I responded to your post before reading through (I read to as far as the quote).

While I accept that CBT has clearly helped you I would argue that using that truth to argue for CBT in general may do more harm defending it than good IMO.

I agree with others that there are a number of ways to get help that don't involve CBT and avoid the very real downside of the CBT expansion into all aspects of illness.
 
Jonathan Edwards said:
I understand that you got value out of the advice but is this in any sense 'CBT'. I spent my life explaining to people about their arthritis, what to hope for and what to accept as the natural path of their illness and what we knew about the best way to cope in terms of activity and work and so on. I would see them regularly over a period of years and discuss whatever was uppermost in their concerns at the time. I didn't see that as CBT but just the ordinary support function of a doctor. I very rarely asked someone else to do it either because they were unlikely to know more than I did about the illness or what to do or I had reason to think they believed in phoney theories about effects of activity on joints or mechanisms of pain.
Click to expand...
It was more that we worked on how to change the behaviour I knew was causing problems but couldn’t seem to break out of. I was in a terrible boom and bust cycle, much of which I can now see with many years hindsight was mostly my own problems with societal expectation of women’s roles, feeling like I had to push myself to keep the house clean and tidy (or as far as possible with three teenagers, two with ADHD!), trying to take the load off my poor husband who was now having to support us all in one wage, and doing the emotional work for my youngest child who was having mental health issues as well as “running” the house and the family. I had to learn to stop trying to do everything as I’d always done before and it was almost like the work with the nurse gave me permission to be ill for the first time, to see that I was important too and that i needed to take care of my own health and to stop trying to pretend to myself that everything was normal.

Though I would have loved a doctor like you to help with my arthritis and my youngest daughter’s EDS, we struggle so much getting anyone to understand (let alone treat) the level of pain she lives with and no one seems to want to listen. You sound like a wonderful doctor and I’m sure your many patients greatly appreciated your time and thoughtfulness. I know I do here :)
 
Grigor said:
So I often get in discussions with BPS folks and the criticism some of them have is that we patients reject psychological treatments as a whole.

As a counterargument I often refer to the Energy Envelope Theory from the DePaul that is not considered controversial by the community and that is has similarities with Acceptance and Commitment Therapy.

https://me-pedia.org/wiki/Energy_Envelope_Theory#:~:text=The envelope theory suggests that,and symptoms of severe fatigue

The criticism they have is that EET is more about pacing, behavior and has too little to do with the cognitions, emotions etc. I haven't read enough about the EET but that could be true.

So I am looking for a more classic CBT model/treatment that respects our disease mechanism. Is there a CBT model designed for ME?

Thank you!
Click to expand...

I can add my ten cents. Firstly there is the nurse in Scotland who seems to be very popular. He seems to offer people a great deal of support as well as helping people with pacing etc
. Secondly the closest therapy I've come across as suitable for folks with M.E. is health psychology. I developed some issues a few years back which required support. Health psychologists are trained to help disabled people cope with their health problem or help treat any psychological problems unrelated to your health but from the viewpoint of a disabled person. At no point have they insisted on 'treating my M.E' and I've been able to go at my own pace. I really liked the fact that I was being treated just as any other disabled person would be; respectfully.
I'm find it tragic that people can't access mental health support because of the threat of having your M.E. 'fixed' ie inappropriate confrontational practices that push people into relapses.
Also I was so ill at the beginning of the illness that I just needed care, pushing my brain into thinking about anything was too much. Particularly needed to be told it was okay to be ill and let go of my life as it had been.
 
You must log in or register to reply here.
Back
Top Bottom