Psychological therapies - Discussion thread

[Concentric_Spiral]

Doctors need to be aware of the medical framework. I am not sure that psychotherapists do. In this context they just need to be aware that poeple with ME/CFS are likely to have problems because others around them do not believe they are ill. That is a social problem I would expect a well-informed psychotherapist to be familiar with.

The fact sheet for professionals is not intended as a guide to treating people - professionals need to learn that through practical involvement. Similarly I wouldn't want to tell a psychotherapist what to do. The health professional fact sheet might be of value for psychotherapists treating people with ME/CFS for other conditions but it doesn't really go in to the problems of social isolation etc.

You may be right that no special information is required to enable psychotherapists to be helpful. But I'm not sure. I've been trying to find a psychotherapist for almost a year, and I feel like it would facilitate the process if there was a document I could give potential psychotherapists to inform them about 1) the medical basics, 2) the general psychological challenges for people with ME/CFS and possibly 3) a caution about how conventional therapeutic approaches could be contraindicated for clients with ME/CFS.

 

[Concentric_Spiral]

But then that is a knock on effect of the ME/CFS, and I would expect someone capable of providing support to find it obvious that 'standard psychotherapeutic approaches' are garbage and that ME/CFS is an illness that is often not believed.

You may be overstating it to say that all standard psychotherapeutic approaches are garbage. What is that claim based on?

 

[Concentric_Spiral]

In Germany there’s Bettina and Tilman Grande. They seem to do a pretty good job. Here’s some discussion:

Post in thread 'News from Germany'

Aug 12, 2025

Interview in the big german newspaper DER SPIEGEL:

(S+) ME/CFS: Eine Psychotherapeutin erklärt, weshalb die Krankheit so oft verkannt wird

Manche Betroffene können nicht mal mehr das Bett verlassen: Doch die Ursachen der Krankheit ME/CFS sind kaum erforscht, es gibt viele Falschannahmen. Eine Psychotherapeutin sagt, was sie über Patienten gelernt hat und was sie fordert.

www.spiegel.de

AI Summary: Interview on Chronic Illness ME/CFS​

This interview with psychotherapist Bettina Grande explores the significant suffering, misunderstanding, and neglect faced by those living with ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome).

Key points:

• Serious physical illness: Most of Grande's ~250 ME/CFS patients are...

• Chandelier

• 

They also released a paper on the topic:

Thread 'The Role of Psychotherapy in the Care of Patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome 2023, Grande,Vink,Hughes et al'

Apr 6, 2023

Abstract:
Myalgic encephalomyelitis/chronic fatigue (ME/CFS) is a post-infectious, chronic disease that can lead to severe impairment and, even, total disability. Although the disease has been known for a long time, and has been coded in the ICD since 1969 (G93.3), medical research has not yet been able to reach a consensus regarding its physiological basis and how best to treat it. Against the background of these shortcomings, psychosomatic disease models have been developed and psychotherapeutic treatments have been derived from them, but their empirical testing has led...

• Sly Saint

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The german ME/CFS.de society published a leaflet on the topic:

Informationsblatt - Begleitende Psychotherapie — Deutsche Gesellschaft für ME/CFS

Das Informationsblatt beschreibt, wie Psychotherapie ME/CFS-Betroffene dabei unterstützen kann mit den Folgen der Erkrankung umzugehen.

www.mecfs.de

Thanks very much for this!

 

[Jonathan Edwards]

I've been trying to find a psychotherapist for almost a year, and I feel like it would facilitate the process

You may be right. Our health professionals fact sheet might help. But maybe you want someone who is already up to speed on such things in terms of psychological implications. I would think more in terms of a counselling psychologist than a psychotherapist.

 

[hotblack]

The health professional fact sheet might be of value for psychotherapists treating people with ME/CFS for other conditions but it doesn't really go in to the problems of social isolation etc.

Sure, I was thinking more of the value of the framework that is being worked up by people like Joan than your factsheet. That’s what I originally pointed @Concentric_Spiral to.

There’s obviously some different perspectives on what psychotherapy is and where the values lie as well probably as different approaches in different countries. Some of which seems to be getting a bit away from or perhaps mixed up in the topic of this open letter.

 

[Jonathan Edwards]

You may be overstating it to say that all standard psychotherapeutic approaches are garbage. What is that claim based on?

A lifetime of interaction with psychiatrist and psychotherapists and, since getting interested in ME/CFS, a reading of the literature on psychotherapeutic approaches to ME/CFS. It all looks to me frighteningly ungrounded in any cogent theory or practical evidence. And of course there is nothing new in saying this since it was the basis of Popper's famous definition of a scientific idea.

Many of my parents friends were famous psychodynamic practitioners in London int he 1960s. Over the years I came to learn how much damage they did.

 

[Concentric_Spiral]

You may be right. Our health professionals fact sheet might help. But maybe you want someone who is already up to speed on such things in terms of psychological implications. I would think more in terms of a counselling psychologist than a psychotherapist.

Ah, OK. I figured there was a confusion about types of psychotherapist here. In Canada, there isn't a distinction between counselling psychologists and psychotherapists. The only distinction is between psychiatrists (medical doctors with a PhD in psychology) and psychotherapists (generally just referred to as therapists), who are psychologists, counsellors, etc. The latter are not doctors.

 

[Jonathan Edwards]

Sure, I was thinking more of the value of the framework that is being worked up by people like Joan than your factsheet.

Yes, I don't know if Joan has produced anything as yet but I realise that she has been working with the British Psychological Society to produce some material and it sounds as if it could be remarkably good. I didn't think we had sight of it yet though.

 

[Jonathan Edwards]

The only distinction is between psychiatrists (medical doctors with a PhD in psychology) and psychotherapists (generally just referred to as therapists), who are psychologists, counsellors, etc.

It is probably not that different here in the UK but people known just as 'therapists' are by and large those who use bogus psychodynamic theory.

 

[Concentric_Spiral]

A lifetime of interaction with psychiatrist and psychotherapists and, since getting interested in ME/CFS, a reading of the literature on psychotherapeutic approaches to ME/CFS. It all looks to me frighteningly ungrounded in any cogent theory or practical evidence. And of course there is nothing new in saying this since it was the basis of Popper's famous definition of a scientific idea.

Many of my parents friends were famous psychodynamic practitioners in London int he 1960s. Over the years I came to learn how much damage they did.

That sounds awful. I'm thinking about information that could help anyone aiming to provide mental health support to people with ME/CFS - not to explain it away as psychosomatic.

 

[Jonathan Edwards]

That sounds awful. I'm thinking about information that could help anyone aiming to provide mental health support to people with ME/CFS - not to explain it away as psychosomatic.

I suspect Joan Crawford is the person we need. She has been a bit busy I think. Hopefully the BPS information will soon be available.

 

[Concentric_Spiral]

I suspect Joan Crawford is the person we need. She has been a bit busy I think. Hopefully the BPS information will soon be available.

That would be fantastic.

 

[Utsikt]

Yes, but surely a psychotherapist with a braod enough outlook to be able to make any sensible assessment of someone's needs would be aware of ME/CFS as a disease that poses problems because others do not believe in it. I would have thought anyone who socialises a bit would be aware of that.

Mine knew nothing about it, but she knew that and didn’t pretend that anything she did would have an impact on my health.

For example, I did a psychotherapy session with an otherwise excellent therapist who wondered if successful therapy could ultimately give me more energy. He was not dismissive in any way, just unaware of how upsetting / triggering that type of comment could be. That's a narrow and obvious example that turns on knowledge of ME/CFS, but my instinct is that there are other guidelines that could be helpful.

Depending on how much you’re told him, it doesn’t look like he has quite understood..

But why do we need a psychothreapist rather than someone with a bit of understanding of life and social interaction?

I paid for having a third party that was fully focused on me, and who I could say anything to without having to consider the potential consequences of that information for the other relationships in my life.

It also had some importance that it would get certain people off my back about «taking care of my mental health».

 

[NelliePledge]

Same as @Utsikt plus from dealing with the consequences of my parent’s severe dementia I had already learned the benefit of having someone with no agenda to vent to so I was in the privileged position of having that already in place when I started to become ill myself.

 

[Concentric_Spiral]

Mine knew nothing about it, but she knew that and didn’t pretend that anything she did would have an impact on my health.

Depending on how much you’re told him, it doesn’t look like he has quite understood..

I paid for having a third party that was fully focused on me, and who I could say anything to without having to consider the potential consequences of that information for the other relationships in my life.

It also had some importance that it would get certain people off my back about «taking care of my mental health».

Exactly as you said - having someone who is paid to be fully focused on my mental health and wellbeing is a unique and valuable resource. In addition, it's not always possible to talk about the darker side of living with ME/CFS (e.g., suicidal ideation, despair) with just anyone. Sometimes it requires a professional who is also at a relational distance to play that role.

 

[Concentric_Spiral]

Same as @Utsikt plus from dealing with the consequences of my parent’s severe dementia I had already learned the benefit of having someone with no agenda to vent to so I was in the privileged position of having that already in place when I started to become ill myself.

Sorry about your parent's severe dementia. Sounds incredibly hard.

 

[NelliePledge]

Sorry about your parent's severe dementia. Sounds incredibly hard.

Thanks it was

 

[Robert 1973]

My ex therapist was aware of the lack of medical care, unhelpful medical staff, psychologisation of the illness and impact of any type of exertion. She explicitly encouraged me to do less and rest more.

However, even if you use the sessions just to moan and groan, sooner or later you can (and probably will) open Pandora's box of thoughts and feelings which will last for days after the session. Then you are basically on your own with it given the lack of capacity to socialise and share it with other people which is usually a normal course of action.

I'm not saying suppressing is the way to go but unnecessary digging and stirring can cause more problems than it can solve.

When I was an inpatient in Romford in 1999
(which then had an ME/CFS inpatient service in the department of neurology under Prof Finlay) I remember the psychotherapist/counsellor asking me if I wanted any counselling or psychotherapy.

When I said no thank you, she was quite insistent that it might help me to talk about things. Again I told her that I didn’t feel it would be a good use of my very limited capacity, which was already being stretched by everything else that was required of me in hospital, and that I had found that trying to use my very limited capacity to think and talk other things was more therapeutic than using my it to talk about how awful things were. But again she insisted and eventually I acquiesced.

In my first – and only – session she asked me about the difficulties I faced. After listening to me for a while, her advice was that I should try to focus on other things.

She was pleasant and friendly but if our session achieved anything it was only to further her understanding.

 

[Suffolkres]

When I was an inpatient in Romford in 1999
(which then had an ME/CFS inpatient service in the department of neurology under Prof Finlay) I remember the psychotherapist/counsellor asking me if I wanted any counselling or psychotherapy.

When I said no thank you, she was quite insistent that it might help me to talk about things. Again I told her that I didn’t feel it would be a good use of my very limited capacity, which was already being stretched by everything else that was required of me in hospital, and that I had found that trying to use my very limited capacity to think and talk other things was more therapeutic than using my it to talk about how awful things were. But again she insisted and eventually I acquiesced.

In my first – and only – session she asked me about the difficulties I faced. After listening to me for a while, her advice was that I should try to focus on other things.

She was pleasant and friendly but if our session achieved anything it was only to further her understanding.

I am intrigued Robert that you were in Queens in 1999.
There was a tv documentary with Findlay.
I believe I have a recording somewhere. Featured a young dark haired man 'greatly helped' by their desensitisation intervention.
I wonder if that was you?!!!

Also, a friend and Educational psychologist Steve Phillip, 's wife was admitted but she did not benefit.

 

[V.R.T.]

that I should try to focus on other things.

I have found that so many therapists think this is helpful advice. It wasn't helpful even when there were other things to focus on. Just the same sort of truism your family or friends might parrot at you.

Sorry for your experience, it sounds hard.