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

[Hutan]

I'd require measures of both activity patterns and PEM. We must get away from allowing self-report measures on their own.

Well yes, in principle of course I agree. And I think that's really true for a treatment. I did think people might disagree with me saying objective outcomes might not be absolutely required in this particular case - but I'm going to try to defend it.

The question of whether information about pacing reduces PEM and the question about what is the cheapest and most preferred method of giving information about pacing are two different things. Both are worthwhile questions to answer, but they don't necessarily have to be answered together.

NICE assumed that providing information about pacing was a good thing, so, at least in England, health care workers should be providing information to newly diagnosed people. Is psychotherapy a cheaper and more preferred way of giving people information about pacing than an informed nurse giving someone a talk, a pamphlet and a help-line phone number, or group support sessions? Knowing about whether people with ME/CFS think they feel more confident about managing their illness after being given information is useful and meaningful. Sometimes self-report measures and intervention costs are enough.

When people are first diagnosed (which is when they need the information most), there will be lots of reasons why they can't immediately reduce activity levels and why they still get PEM. If they decide to give up work, there will still be things to sort out. If they decide to move to a smaller house or move home to parents, that will take effort to do. It will take effort to work out childcare options. They will probably still be going to specialist appointments and for tests. I doubt that any measure of activity levels or PEM at the early time would show much difference between the different options over any length of time that is likely to be applied. I think the main thing at that early time is ensuring the person feels that they have the knowledge to manage things.

Maybe what you could do is come back to people a year after their diagnosis and ask them, with hindsight, whether the early support they received was useful. And you could do the assessment of PEM and activity levels then?

 

[Milo]

I'd like to see a trial of approaches to teach and support people with newly diagnosed ME/CFS to pace, approaches something like:

1. Friendly and experienced ME/CFS nurse spends an hour with the person discussing pacing, provides a pamphlet with basic guidance, link to some online resources and the offer of phone support if needed for three months

2. Group meetings (online or not) to discuss pacing and adaptation generally facilitated by a friendly and experienced ME/CFS nurse - maybe a meeting once a fortnight for three months. One of the meetings could also include a family member.

3. One-on-one psychotherapy sessions provided by a friendly psychotherapist familiar with the NICE guidelines once a fortnight for three months to discuss pacing and whatever else the psychotherapist thinks is important

* Assess reported confidence to manage activity levels to avoid PEM - survey before, immediately after the therapy and three months after the end of the intervention.

* Assess satisfaction with the intervention in providing information that has been helpful in illness management generally

*Assess cost-effectiveness

I wold hate spending any precious money on researching these. Just like for PACE trial, plenty of opportunities for bias, for vested interest, for enrolling fatigued patients and other issues with trial design and interpretations. I am reminded that Reid berg has obtained federal grants for similar topics that were over 1 million $. I would rather the money be spent in finding bio markers and actual treatments.

 

[Ravn]

So, in a nutshell they're telling psychotherapists that when pwME turn up in their practice, as inevitably they will whether of their own volition or sent against their wishes by misinformed doctors, then they should not subject those pwME to GET/CBT but instead support their efforts at pacing, understanding PEM and coping with being ill, and they should treat the patient as the expert in their own illness.

That is all good and probably the best we can hope for in the current context. Damage control. Admittedly it's debatable whether psychotherapists are the best-placed people to do this - something along the lines of @Hutan's suggested trial in post #18 would be interesting to do - but since pwME get sent to psychotherapy it's best if at least they strike an ME-educated professional.

Not mentioned in the paper but I've seen a number of pwME report that their psychotherapist was the first person ever to validate their illness as being not psychosomatic. Which can be a non-negligible benefit if a pwME has a misinformed network around them. In that situation it can be helpful to be able to say hey, even my psychotherapist says it's not in my head, I'm not lazy and I have to rest and pace. This could be one situation where a psychotherapist really is more "help" than a community nurse or a patient support group. It's buying credibility by reference to (perceptions of) authority or eminence but sometimes we have to use whatever strategy is available to us to protect ourselves.

Overall I think this is a useful paper in the current context which is sadly still all about minimising harm. Some decent research into what type of support actually works best is long past overdue.

 

[Sly Saint]

Maybe what you could do is come back to people a year after their diagnosis and ask them, with hindsight, whether the early support they received was useful.

I've seen a number of pwME report that their psychotherapist was the first person ever to validate their illness as being not psychosomatic. Which can be a non-negligible benefit if a pwME has a misinformed network around them. In that situation it can be helpful to be able to say hey, even my psychotherapist says it's not in my head, I'm not lazy and I have to rest and pace. This could be one situation where a psychotherapist really is more "help" than a community nurse or a patient support group.

The problem here is it depends on what information the pwME was 'fed' to start with, even if they (the therapist) do give some kind of reassurance that the illness is not 'all in their head'.
If it's all about 'boom and bust', setting baselines and trying to get them to think positive thoughts, telling them that this is how the condition needs to be managed then it is highly likely that will frame their answers.

Having someone to talk to and listen and not feeling that you are the only one, and there are others who understand what you are going through is possibly one of the most 'helpful' things at the beginning in particular.
But this needs to be in addition to practical advice and help and if the health professional is not able to do that then directing the pwME to someone who can help.
I got a lot of sympathetic talk from my GP in the first few years but little practical advice.
(I remember telling him that joining AfME (pre internet days) was the most useful thing at the time!! and I made the mistake of believing all the information that they gave members, for 12years).

So until all the misinformation is corrected, standardised and adopted by the main health authorities, the current ad hoc approach to 'treatment' in the guise of 'individualised' treatment plans is wide open to misinterpretation. eg what is pacing.

Also public perception is generally that if you are being 'treated' by a psychotherapist then you must have a mental illness, regardless of the therapist telling you that you don't.

 

[EzzieD]

Also public perception is generally that if you are being 'treated' by a psychotherapist then you must have a mental illness, regardless of the therapist telling you that you don't.

This is exactly why, when threatened with being sent to a psychiatrist by one GP because my routine blood tests were always normal although I was seriously physically ill, I nearly took him up on it: I would have said "OK, send me to a psychiatrist. His report will be 'Why have you wasted my time sending this patient to me, she doesn't have a psychological condition!'." But I bit my tongue, because I knew that once a referral to a psychiatrist was in my notes, all subsequent doctors would take note. Even if it said there were no psychological issues found, they would skim over that because it's not what they want to hear. So it's best to just not go there.

 

[Hutan]

I wold hate spending any precious money on researching these. Just like for PACE trial, plenty of opportunities for bias, for vested interest, for enrolling fatigued patients and other issues with trial design and interpretations. I am reminded that Reid berg has obtained federal grants for similar topics that were over 1 million $. I would rather the money be spent in finding bio markers and actual treatments.

Valid points. But, at the same time, lots of scarce health service money is being wasted offering psychotherapy to people with ME/CFS who really don't need it and who actually might end up being harmed. I suspect the cost of those services way outweighs the amount of money being spent on ME/CFS research of any sort.

My son got sent along to a psychologist just for help coping with having ME/CFS, not because he really needed it, but because it was something our GP could organise. That psychologist, over 10 sessions, diagnosed my son with conversion disorder and school phobia, something that was demonstrably untrue. (And I know that might raise questions in some of you - perhaps he really was frightened of school? - but he absolutely wasn't.) So there it was, the government paid for 10 expensive sessions, and my son ended up with 'conversion disorder' on his medical record (something that neither my son nor us as parents knew about until years later when I got copies of our medical notes) and an increased tendency to hide the fact of his illness from others and periodically deny it even to himself.

Sure, the money saved by not offering psychotherapy liberally might not instead be used for ME/CFS biological research. But a study along the lines of what I suggested, if done well, could really highlight the limited role for psychotherapy in ME/CFS management and the fact that there is no meaningful treatment for ME/CFS. It could help to serve as a sort of clearing of the decks, possibly helping to improve the composition of staff in any ME/CFS clinics.