Psychological therapies - Discussion thread

[Concentric_Spiral]

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.

The challenge may go beyond knowing that people are skeptical about ME/CFS. Some of it is understanding that the science does not suggest that ME/CFS is psychosomatic, but also as per the passage I quoted above, conventional psychotherapeutic approaches of trying to get clients to push various types of limits (not just physical) can be harmful.

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.

 

[Jonathan Edwards]

The conventional paradigm for therapy isn't always a good fit for ME/CFS. I don't have the energy to write more now, but to give you a sense of this issue, here is an excerpt from an article:

I hadn't seen that article. It seems to be about psychotherapy directed at ME/CFS. It starts off fairly sensibly but I am sceptical about the way it then seems to slip into the usual justification of a role for a specific therapist when all we know is that people with ME/CFS seem to do best if they try not to do more than PEM allows.

I don't see a role for a psychotherapist here.

 

[Concentric_Spiral]

I hadn't seen that article. It seems to be about psychotherapy directed at ME/CFS. It starts off fairly sensibly but I am sceptical about the way it then seems to slip into the usual justification of a role for a specific therapist when all we know is that people with ME/CFS seem to do best if they try not to do more than PEM allows.

I don't see a role for a psychotherapist here.

The role for a psychotherapist is to bolster the mental health of people who have ME/CFS. Very important obviously given the rates of self harm in the patient population. The question is whether standard psychotherapeutic approaches are up to the task. They may not be. The rest of the article I linked is not particularly germane to this point. I quoted the section about the problems with standard therapy for people with ME/CFS to highlight the methodological challenges that can make psychotherapy less helpful or harmful to people with ME/CFS.

 

[Jonathan Edwards]

But we know that’s not the case with huge swathes of people.

But psychotherapists are supposed to be well-informed and perspicacious about people's 'psychological needs'.

 

[Felis Catus]

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.

 

[Concentric_Spiral]

But psychotherapists are supposed to be well-informed and perspicacious about people's 'psychological needs'.

Doesn't the same apply to doctors and physical needs? And yet you worked hard on the excellent fact sheets for physicians.

 

[Jonathan Edwards]

The role for a psychotherapist is to bolster the mental health of people who have ME/CFS.

But why do we need a psychothreapist rather than someone with a bit of understanding of life and social interaction? Psychological theory has nothing to offer here as far as I know.

Very important obviously given the rates of self harm in the patient population. The question is whether standard psychotherapeutic approaches are up to the task. They may not be.

It may be that some psychologists develop skills to effectively support people in the situation where there is major despair and self harm, I accept. But I see those people as likely being the ones who already see that 'standard psychotherapeutic approaches' are the sort of phoney science best kept well clear of.

 

[hotblack]

But psychotherapists are supposed to be well-informed and perspicacious about people's 'psychological needs'.

And doctors are supposed to be about the full range of a patients needs. I’m questioning why you are distinguishing here, I’m not sure its helpful.

The role for a psychotherapist is to bolster the mental health of people who have ME/CFS. Very important obviously given the rates of self harm in the patient population. The question is whether standard psychotherapeutic approaches are up to the task. They may not be.

On this I disagree a bit. There is probably a role for people who need psychotherapy for non ME/CFS needs, I’m less sure beyond that as things get murky. Some may argue there is a role for helping people deal with any long term chronic illness. For ME/CFS I think most people’s mental health problems are caused by the lack of real recognition and support, supported by medical malpractice as being pushed by organisations like BACME. Fixing that is the route to bolstering the mental health of people with ME/CFS, claiming otherwise opens the door for more of the problem not a solution.

 

[Concentric_Spiral]

But why do we need a psychothreapist rather than someone with a bit of understanding of life and social interaction? Psychological theory has nothing to offer here as far as I know.

And doctors are supposed to be about the full range of a patients needs. I’m questioning why you are distinguishing here, I’m not sure its helpful.



On this I disagree a bit. There is be a role for people who need psychotherapy for non ME/CFS needs, I’m less sure beyond that as things get murky. Some may argue there is a role for helping people deal with any long term chronic illness. For ME/CFS I think most people’s mental health problems are caused by medical malpractice as being pushed by organisations like BACME, of the lack of real recognition and support. Fixing that is the route to bolstering the mental health of people with ME/CFS, claiming otherwise opens the door for more of the problem not a solution.

Not sure I understand this point. Even if you could wave a magic wand and eliminate all denial and malpractice about ME/CFS, unless there was also a cure available, surely people as disabled as we are - with a lower quality of life than with other serious conditions - would need mental health support?

 

[Jonathan Edwards]

Doesn't the same apply to doctors and physical needs? And yet you worked hard on the excellent fact sheets for physicians.

I don't quite see the two as parallel. You need doctors to make a diagnosis. I am not convinced that you need psychotherapists for ME/CFS - I am still a bit unclear as to whether we are talking about needs relating to ME/CFS or to something else?

 

[Concentric_Spiral]

But why do we need a psychothreapist rather than someone with a bit of understanding of life and social interaction? Psychological theory has nothing to offer here as far as I know.


It may be that some psychologists develop skills to effectively support people in the situation where there is major despair and self harm, I accept. But I see those people as likely being the ones who already see that 'standard psychotherapeutic approaches' are the sort of phoney science best kept well clear of.

Psychotherapy isn't science.

 

[Concentric_Spiral]

I don't quite see the two as parallel. You need doctors to make a diagnosis. I am not convinced that you need psychotherapists for ME/CFS - I am still a bit unclear as to whether we are talking about needs relating to ME/CFS or to something else?

I am unclear as well. The rate of suicidality among people with ME/CFS surely speaks to the need for mental health support?

 

[hotblack]

Not sure I understand this point. Even if you could wave a magic wand and eliminate all denial and malpractice about ME/CFS, unless there was also a cure available, surely people as disabled as we are - with a lower quality of life than with other serious conditions - would need mental health support?

Because as I explained most of the distress I have seen is caused by that denial and malpractice. Beyond that there’s just a need for acceptance of the reality of the condition. Is that hard? Sure. But it’s something a whole range of people could help with. And do with most other incurable conditions.

We would need support. We would need recognition. We would need compassion. These are not psychotherapy.

 

[Jonathan Edwards]

And doctors are supposed to be about the full range of a patients needs. I’m questioning why you are distinguishing here, I’m not sure its helpful.

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.

 

[hotblack]

I am unclear as well. The rate of suicidality among people with ME/CFS surely speaks to the need for mental health support?

It speaks to the harm done by a society and healthcare system that treats us terribly. No amount of psychotherapy can fix that. The problem is not how we think.

 

[Concentric_Spiral]

Because as I explained most of the distress I have seen is caused by that denial and malpractice. Beyond that there’s just a need for acceptance of the reality of the condition. Is that hard? Sure. But it’s something a whole range of people could help with. And do with most other incurable conditions.

We would need support. We would need recognition. We would need compassion. These are not psychotherapy.

Support, recognition and compassion are not always available from people who are not mental health professionals. If we only lean on our caregivers, they can easily burn out. I'm not sure why you don't think psychotherapy can provide support/recognition/compassion? Maybe psychotherapy is very different in other countries? Here in Canada, that is definitely within the wheelhouse of psychotherapists.

 

[Concentric_Spiral]

It speaks to the harm done by a society and healthcare system that treats us terribly. No amount of psychotherapy can fix that. The problem is not how we think.

What about the harm done by ME/CFS itself? And surely therapists can help to provide understanding, compassion and support precisely when society and medical systems fail us?

 

[Jonathan Edwards]

Psychotherapy isn't science.

Quite, but it is a bit more complicated. It is a mixture of what i would call phoney science - based on psychodynamic theories and sensible practical support, which isn't science but quite likely keeps people alive.

 

[Chandelier]

I am unclear as well. The rate of suicidality among people with ME/CFS surely speaks to the need for mental health support?

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

• 

She stresses psychotherapists’ limits: if biological and social needs were met, little would remain for her discipline to address.

Grande gets it.

This sounds like an article that would be worth translating in full.

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

• 

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

 

[Jonathan Edwards]

I am unclear as well. The rate of suicidality among people with ME/CFS surely speaks to the need for mental health support?

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.