Sickness & behavior in ME/CFS (Chronic Fatigue Syndrome) - Jonsjö, Martin 2019 (Thesis)

https://openarchive.ki.se/xmlui/handle/10616/46839

seems to be favouring ACT

 

Wrong on all counts!
Chronic sickness behaviour has been spoken about for at least 20 years.

There is no evidence that malaise etc is maladaptive. Paul Cheney confirmed diastolic heart failure in his patients after it was discovered by the NIH(More research that was abandoned rather than disproved). He felt that this made patients cut back on their behaviour so that they did not get to the stage of needing a heart transplant as in systolic heart failure.

There is no evidence that malaise etc is not due to ongoing disease as fatigue and brain fog both occur in other disease due to ongoing disease.

There is more and more evidence that the PEM of ME is caused by a real ongoing dysfunction of cellular respiration.

 

Yes this is from the group that trialled that feasibility trial of ACT in ME/CFS. You can find discussions of it here and here.

I've briefly skimmed it. Here are some notable sections:


The author thinks that ME/CFS and stress-related exhaustion are quite similar:

He seems to think the most suitable model for ME/CFS is prolonged sickness behaviour:

I think there's a study in the pipeline where they measure sickness behaviour with a Sickness Questionnaire and it showed that patients with ME/CFS and chronic pain report more have higher levels of sickness behaviour than primary care patients and individuals from the general population.

He thinks that the PACE trial (reference 111) forms reliable evidence for the effectiveness of CBT in ME/CFS:

There's also some background on the model on which ACT is based:

Based on their experience with the trial, he notes that it's best that ACT therapists have some knowledge of ME/CFS for example because patients are very ill and have 'hypersensitivity to exertion'

Regarding PEM, which he apparently refers to as 'hypersensitivity to exertion' he notes:

The final remarks sum up his view:

It's not all bad. The author seems to have a reasonable overview of the literature, accepts that PEM is a hallmark symptom and has used the Canadian criteria in his studies. But maybe I'm just lowering the bar out of desperation with these doctoral theses on ME/CFS.

 

ACT - mentioned 7 or 8 times so far and not explained once (as far as I can see, anyway). Translation please!

 

It's all bad.

 

https://www.getselfhelp.co.uk/act.htm

For anyone else who didn’t know what ‘ACT’ is, it’s ‘Acceptance and Commitment Therapy’...

If you get referred for ACT you really know you’ve reached the end of the line, lol. At least it’s a more honest way to patronise patients than CBT. Sorry, in a cynical mood today!

 

Pure opinion and conjecture, part #3490734.

I'm not even sure what's the point of this. What purpose does this serve? It's lazy and ignorant speculation, like every prior here's-my-uninformed-opinion-on-this paper from other equally clueless people. Great experiment in Dunning-Kruger meets the god of the gaps, though.

At least sci-fi from the 1950's speculating about life on Mars was entertaining along with being of equal scientific merit.

 

Thanks @hinterland

 

it pisses me off every time some one use the term uncertain etiology of this disease when the medical world cannot explain the cause of most diseases known to man . the phrase has always been used to cast doubt on any disease they would rather abandon until brighter more productive people do all the hard work/research for them . am I the only person to see that the medical professions business model has never been fit for purpose if every tech company relied on outside research and development bodies they would all collapse.

 

Here's the thing for me:

The logical conclusion of what this person is going on about is that you have to live the rest of your life disobeying your brain, so to speak. Because you aren't really sick - it's just your brain trying to tell you that you are (again, in a manner of speaking).

I think it's common sense to say that people can't push past their pain/discomfort tolerance more than briefly or perhaps a bit longer in situations where motivation is extremely high.

They're asking people to torture themselves for no benefit.

 

I did get a chuckle out of this bit:

People with ME/CFS act like they're sick, in exactly the same way that people who were injected with bacterial toxins to make them sick act like they're sick! How strange! Perhaps psychiatry has the answer?

 

Although it has given rise to much debate and critique from patient organizations, the to-date largest trial comparing CBT to graded exercise, adaptive pacing and standard medical treatment showed moderate but evident improvements in functioning (111)

The more I looked at my slide for NICE the more it sank in that if you give the full Y axes it is pretty hard to call the improvement 'moderate', rather than minuscule, even if you take it as bona fide, which is hard to justify.