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

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 to sobering results.

According to the current state of research, psychotherapy and psychosomatic rehabilitation have no curative effect in the treatment of ME/CFS. Nevertheless, we see numerous patients in practices and outpatient clinics who suffer severely as a result of their illness and whose mental well-being and coping strategies would benefit from psychotherapeutic help.

In this article, we outline a psychotherapeutic approach that serves this need, taking into account two basic characteristics of ME/CFS: firstly, the fact that ME/CFS is a physical illness and that curative treatment must therefore be physical; and secondly, the fact that post exertional malaise (PEM) is a cardinal symptom of ME/CFS and thus warrants tailored psychotherapeutic attention.

https://www.mdpi.com/1648-9144/59/4/719

 

"It is important to realize that pacing is a way of trying to prevent symptom exacerbations and relapses. It is not a treatment that will lead to recovery or a significant improvement in function."

"Psychotherapeutic work with ME/CFS sufferers aims at recognizing and acknowledging (stress) limits. This contradicts the customary attitude of encouraging patients to extend and exceed their limits during treatment, which is widely applied across many psychotherapeutic methods.......it violates the fundamental principle of pacing"

"Moreover, systematically questioning a patient’s perceptions of stress limits in terms of so-called dysfunctional cognitions (a concept often invoked during CBT) or of unconscious motives (as usually focused in psychodynamic therapies) is contraindicated in ME/CFS. That kind of approach encourages individuals to distrust their perceptions of stress limits, in direct contradiction to the principle of paying close attention to, and respecting, such limits as encapsulated by the notion of pacing."


this should be in all literature about pacing. ie no 'pacing-up'.

 

How do we know that patients benefit from 'psychotherapeutic help' though?
Is this actually psychotherapy or just sensible sympathetic advice?
Why would a psychotherapist be involved since they are likely to know rather little about the problem. Why not a nurse or a doctor or a counsellor?


The first author lists himself as an independent researcher but he is also a psychotherapist and psychoanalyst.

 

There are studies that show that it helps! Just what value those studies have is a different question.

 

No, it's the original question. How do we know?
We don't if the studies are poor.
I have never heard of any studies of this sort of psychotherapy for ME.
I am referring to ME rather than in general, but the same question probably does apply generally. Do we know that psychotherapeutic help is of benefit?


Perhaps the crucial point is that Brian Hughes has been admirably critical of research quality in this area, so I am wondering if the same critical approach has been applied here.

 

*i did not read the paper*

Re whether psychological therapy is helpful, I would suggest that transitioning from an active and productive life to the deprivation of that ME brings (disability, great difficulty with self-care, often time financial care and dealing with family and health care system that thinks you are making this up are all good reason to seek out support.

 

I can see this as the sort of necessary compromise that is smart politics for now. We will not find any consensus with the obsession to, somehow, frame this as mental illness. So psychotherapy is not going away any time soon, it's worth making it less harmful.

We shouldn't have to still spend any time on this but pwME will continue to be sent to psychotherapy, this is one way to reduce the harm. Maybe. I don't think it's wasted, this is a decades-long obsession and working their language can have its positive effect, maybe someone will read it and learn something relevant for once.

As long as the whole issue is politicized, it's smart to play good politics.

 

Why is the word "stress" being used? I think that it's an appalling word choice.

 

I agree that this particular article is likely to do more good than harm.

But I think there is a major problem in using exactly the same arguments as the BPS people and the Royal College representatives at the NICE Round Table - that we know our sort of treatment works.

Referring people to counsellors or nurses who are aware of the evidence from patient experience makes sense to me but why a psychotherapist - particularly if their lack of understanding of evidence is demonstrated by involvement in psychoanalysis?

I was irked to see a piece in the Guardian this week written by a psychotherapist who said how wonderful it was to be able to help people like the person featured apparently struck down by Ehlers Danlos syndrome. The description of the symptoms sounded like nothing to do with Ehlers Danlos syndrome. I agree that psychotherapy may not be going away soon but I think we may need to be wary of saying keep away from the BPS people but there is a nice kind witch doctor I know who knows nothing but has lots of theories and smiles a lot for the money.

The authors of this piece may provide an excellent service, but there are armies of incompetents sitting in their drawing rooms with a couple of comfy chairs touting for business.

 

"In this article, we outline a psychotherapeutic approach that serves this need, taking into account two basic characteristics of ME/CFS: firstly, the fact that ME/CFS is a physical illness and that curative treatment must therefore be physical; and secondly, the fact that post exertional malaise (PEM) is a cardinal symptom of ME/CFS and thus warrants tailored psychotherapeutic attention."

All better/more concisely expressed above, but ---

I find this concerning "(PEM) is a cardinal symptom of ME/CFS and thus warrants tailored psychotherapeutic attention."
How can you jump to "(PEM)--warrants tailored psychotherapeutic attention."?
If you had cancer, resulting in fatigue, then presumably the goal would be to treat the cancer and hope the fatigue disappeared; and/or treat the fatigue, as best you can, independent of treating the cancer.
As Jonathan's pointed out, where's the evidence? E.g. does the tailored "tailored psychotherapeutic attention" reduce PEM and how is this demonstrated - increased activity measured by actimetry (Fitbit type devices) other objective assessment?

I couldn't care whether "ME/CFS is a physical illness" I'd just like to see it understood --- diagnosed reliably and treated effectively. OK in the meantime we need support re quality of life, as per others, someone who can engage with patients, understand their needs and support them practically & emotionally --- care worker, someone to talk to ----

I know people whose daughter had severe anorexia --- they joked that if you looked at them [high BMI] it seemed unlikely their daughter would have anorexia. Never looked into it in detail, but there are genes which increase risk --- a genetic basis.
What people need are effective treatments & no-one, psychologist or other, should be held to a lower standard re what the effect of the intervention is --- for PEM actimetry, or other objective assessment, needs to be included.

EDIT - haven't read the paper

 

quite.
In their conclusions the authors say "a radical paradigm shift is needed in psychotherapy, health psychology, and other fields where psychosocial and behavioral support is provided to ill people".

As psychotherapy is now so embedded in healthcare, seemingly unquestioned, (ie the evidence behind the treatments) real change will only come from those within the profession.

I hope that one of the key things that will be re-examined is why certain groups of patients need psychotherapists at all rather than someone who can offer practical advice/help as opposed to trying to 'treat' them(?)

 

Indeed. I’m not sure how helpful without changing the situational or if it does anything for the illness but I guess at least it means access if they do need it for something to someone who doesn’t gaslight and harm them instead if this got pushed thru that profession to undo the crap ideologies stuff.

The real solution of course IS that last bit - not just in those who want to deliver it but all the profession and general laypersons so people get less crap daily on top of their disability.

And then if needed it needs to involve acknowledgment of what was done by others in profession if that’s part of what haunts people who seek such therapy. I can’t see how without apologies and guarantees the therapist is appalled by that old ideology and what it did they could expect someone to feel safe - so would surely need a new badge of ME-safe or something and strict guarantees as part of what that would include.

I’m not sure the ‘being taught to pace’ bit is what patients don’t get (missing the point) it’s that ‘changing the world to allow people to pace’ is what the therapists are ducking: because it’s a hard problem and the former is easier. And sadly that’s the same issue that caused all this - the CBT pretend the real problem that’s complex is something different that the patient didn’t describe because that’s what you fancy doing as your job instead. And it’s just as invalidating as anything else no matter what the intention and minor improvements are. Most of helping with pacing will need those near to the PwME to be dragged in and given a talking to as well ie needs advocacy so the sheer energy involved with getting people to change to something not in their short-term interests is taken on by someone else rather than left with some exhausted person getting played - it just feels naive.

And certainly When you think workplace policies or whatever (I note these because CBT gets ‘weaponised’ here to say we sent them on CBT tick box and yet their performance didn’t improve) that this will get used for it isn’t good enough without the functional adjustments part being properly done alongside it in a multidisciplinary way?

 

I have worries about the psychological harm of someone- whatever their flavour in the HCPs - jumping in micro-managing and asserting phrases like perception (invalidating shouldn’t be part of psychology for smart people with no thought issues). Given the world we are in it’s just another nonsense to manage. Belittling. Disrespectful if they can’t have a word with your boss or relative about that adjustment you need.

Instead that horrid patronising ‘why don’t you reorganise more of what you love and should be able to be free on to accommodate their bigotry and stubbornness’ isn’t likely to move the dial. why don’t you go to bed earlier or skip more showers or lie in the dark instead of having an hour of tv after work instead of asking for a quiet room for lunch time or a late start.

We all shrank our lives but by bit to keep pleasing people who didn’t want to acknowledge and all it means is that by the time WE arrive disabled at someone’s door we’ve little left to give up and are already ten times more tenacious than the teacher can come up with. Suggesting ‘why don’t you shop online’ to someone who had to do that 10yrs ago and now is having to work out how to get it from the door to the plate when you aren’t awake for any hours after coming home from work and crashing out in your suit as they’ve got iller - is the sort of cliched ‘gap’ others assumptions tend to involve

it’s so crushing to find that ‘help’ involves wasting your energy having to smile at an idiot missing the mark ‘because we’d be branded as rude for telling them’ but just because an idiot smiles when they do it, uses kind words, or claims good intentions, doesn’t make it nice and not draining for people who have that daily.

The idea we became thicker than someone who barely did their homework, nevermind has no life experience of one’s severity of ME, when most of us pulled off doing twice as much as healthy people with half the health and energy IS another bigotry too many don’t realise they inadvertently can end up falling into in the name of trying to help (but just what they have to offer is below the level of the patient’s knowledge, and replace with harmful 'boosterism' of basic irrelevant ideas).

You might get the odd good one but sadly roll these out en masse and too many aren’t high in self-awareness on this unless it’s inbuilt into the model how much knowledge practitioners should actually have on these topics.

 

I think this is the real question. I think the article is premised on a general "understanding" that overall psychotherapeutic help is of benefit. But my cursory understanding is that measured benefits are associated with the relationship with the therapist rather than any particular modality. The essential element might be in the end what Jonathan suggests--a sympathetic ear, a wise friend, etc. Does training qualify some people to be better equipped to do that than someone else? I don't really know. Added: I have benefited from psychotherapy but maybe I'd have benefited as much from talking to a wise friend, if anyone could stand to listen that much without getting paid. But of course I would have many reasons to persuade myself or tell myself and others that I had benefited even if I really hadn't.