Opinion Chronic fatigue syndromes: real illnesses that people can recover from, 2023, The Oslo Chronic Fatigue Consortium

The Goldilocks theory of disease.

 

• they lay the blame for any harms/non-recovery reported on the personality flaws of those who suffer them, rather than on the product

We have a thread on the analogy
Similarities between the tobacco industry and BPS/insurance interests


and there's ME/CFS Skeptic's blog:ME/CFS SKeptic: A new blog series on the dark history of psychosomatic medicine

 

As it is a red flag for me to have a medical professional say it, I find it hard to believe that many become convinced by being told it's evidence based alone.. In group sessions it can work "well" as a way to make someone quiet and stop disturbing the group. I don't have numbers, and I guess neither do my professors.

I do think it is more common in group sessions though, as for individual patient meetings someone who don't believe in the profession may be less likely to show (while group sessions can be part of a larger follow-up of someone becoming ill and there can be multiple things occurring for the patient on the same day with one lecture of diet being thrown into the mix).

 

Very well summarised, Ravn.

I've had a go at picking apart the abstract, which is wrong on every level, yet written to sound convincing:

Referring to 'Chronic fatigue syndromes is a sneaky way of pretending all fatiguing illness that doesn't have an easily recognised biological basis can be lumped together. In the article they include, for example, burnout, which is not the same condition as ME/CFS. It is nonsense to try to attribute the same biological explanations, treatments or recovery rates to such different conditions simply on the grounds that both involve a vaguely defined symptom like fatigue.
Fatigue can vary in interpretation from tiredness from lack of sleep or fatigue in a healthy person after exercise, to psychological fatigue in depression, to abnormally rapid muscle and/or cognitive fatiguability that occurs during and after normal daily activities in ME/CFS.

There is no claim by anyone that any fatiguing illness in their list is incurable, particularly post infectious fatigue such as Long Covid, which is well recognised as having quite a high recovery rate in the initial few months to two years. Recovery from ME/CFS is much less likely after 2 years, with some figures given as about 5%, possibly higher in children.

This is not so much an alternative view, as an old discredited view reheated. The research quoted has been shown to be very poor quality, and routinely misrepresented by its proponents. The so called hope it offers is false hope.

The proposed biopsychosocial model is based on flawed science and opinion not based on sound evidence. It is not new, it is rehashing of old ideas adhered to by a small group of clinicians despite evidence that treatments based on the idea are ineffective and many report harm.

There may be evidence to support this for burnout. There is none for ME/CFS.

This attempt to discredit the whole idea of post-exertional malaise as a physiological phenomenon is despicable and wrong. PEM is not a result of anxiety, it is a usually delayed physiological response to activity beyond the person's current activity limit, and results in significantly increased sympoms such as pain, orthostatic intolerance, nausea, headache, sore throat, sensory sensitivities etc, as well as significantly reduced ability to function physically and cognitively.

People with in PEM don't choose to lie down in darkened rooms, their symptoms give them no option. Repeated and prolonged bouts of PEM can lead to long term or permanent worsening. Activity management aimed at avoiding triggering PEM is not about anxiety or catastrophising, it is sensible response to known likely outcomes.
Referring to activities as 'perceived to worsen' symptoms is insulting. PwME don't just perceive/imagine worsening, they experience it physically.

Characterising rest, isolation and sensory deprivation as choices based on misunderstanding of how to cope with illness is wrong and insulting to patients. People with severe and very severe ME/CFS are not choosing their lives being so restricted, the disease gives them not alternative. If you faint when you sit up, you have no choice but to lie down, if sounds cause physical pain, you are forced to live in quiet. If seeing a friend for a few minutes makes you so sick you can't get out of bed or eat for the next weeks, you are forced into isolation. To describe this as people making bad choices is insulting and shows complete lack of understanding of PEM and severe and very severe ME/CFS.

That may work in mild depression or burnout, but there is no evidence from all the many clinical trials of graded exercise therapy and CBT that people with ME/CFS improve significantly or recover better with these treatments than with standard medical care, or lack of it. Worse than useless, people with PEM are made sicker when they try to increase activity beyond their current limits. Just read the personal accounts on the S4ME petition and numerous patient surveys.
To suggest this here, as if it were a new and hopeful approach is wrong on every level and I think, criminally negligent.

Individual recovery anecdotes are notoriously unhelpful as it is not possible for individuals to know whether improvement or recovery occurred naturally by good fortune or has any relation to whatever treatment they were doing at the time.
What they are actually arguing for here is a return to an old outdated and disproved approach to ME/CFS - lumping it with different fatiguing conditions, denying the validity of PEM, and basing their arguments on anecdotes and very poor quality research.

I don't know why I've bothered to write all this. Forum members have heard it all before, those of us with ME/CFS have been faced by this sort of denialism of our experience many many times before. It's insulting, dangerous and unscientific. The authors should be ashamed.

 

As I would expect, ChatGPT can only parrot what it finds in this and other documents. It can't distinguish, for example, the claim in the article that this is a new approach from the fact that it's just the old discredited approach reheated. It's an interesting experiment, but until it can sort the wood from the trees, I think it just adds to confusion by muddling together sensible and nonsensical stuff.