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

[Sly Saint]

Abstract
Background: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a chronic debilitating condition characterized by physical and mental fatigue with a heightened sensitivity to exertion. To date, the causes are unknown.

However, recently the condition has been implicated as a chronic sickness behavior state. That is, the adaptive changes in brain and behavior commonly following acute infection (experiences of malaise, fatigue, brain fog and so forth) seem to have become chronic and thus maladaptive, since no infectious agent is present. The condition is often debilitating, but no effective treatments are available, which implies that interventions are normally aimed at reducing symptoms and/or restoring or improving functioning.
Furthermore, classifications are multiple and not empirically based. As such, there is a need for: (1) empirical investigations of how symptoms present and relate to each other and other measures of clinical importance; (2) evaluations of behavior medicine treatment approaches aimed at improving functioning and quality of life, and; (3) studies investigating sickness behavior processes in ME/CFS on both subjective and objective levels.

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

seems to be favouring ACT

 

[Mithriel]

However, recently the condition has been implicated as a chronic sickness behavior state. That is, the adaptive changes in brain and behavior commonly following acute infection (experiences of malaise, fatigue, brain fog and so forth) seem to have become chronic and thus maladaptive, since no infectious agent is present.

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.

 

[ME/CFS Skeptic]

seems to be favouring ACT

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:

Historically, phenomenological descriptions of the conditions we now classify as either ME/CFS or clinical burnout/stress-related exhaustion are analogous to the condition termed Neurasthenia, or Nervous Exhaustion, by George Beard in 1869 (3). Interestingly, since then, ME/CFS and stress-related exhaustion have been researched and clinically treated as two separate phenomena depending on their assumed etiologies (immunological vs. psychological stressors), despite the many similarities as discussed below

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

the increasing body of research on the relations between the sickness behavior circuitry and psychological/behavioral factors has led to some preliminary but interesting results within the ME/CFS field

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:

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)

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

In a learning theory-based behavior medicine treatment approach, educating the patient about the evolutionary but unhelpful function of prolonged non-malignant symptoms and the behavioral repertoire it triggers is a core intervention. Hence, a shift in perspective, from symptom reduction to a valued life, could be a more accessible and effective approach in behaviorally oriented treatments for a chronic illness like ME/CFS.

focusing solely on symptom resolution in a condition where no pathophysiological process is known and hence without evident markers and mechanisms to target, could potentially establish rules and behaviors that paradoxically only will produce more discomfort and suffering

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'

Although the drop-out could be considered reasonable (20%), a personal reflection from the trial is that ACT for ME/CFS requires therapists that are up-to-date regarding the current body of research on ME/CFS in order to maintain the face validity of an ACT approach to symptoms and discomfort […]the hypersensitivity to exertion in ME/CFS brings its own set of challenges when conducting an out-patient protocol-based trial requiring a certain frequency of face-to-face sessions in the clinic. Namely, sometimes patients are too disabled to attend sessions

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

in my opinion, this is not a symptom in itself but rather a hypersensitivity to stimuli and/or effort resulting in symptom flare that varies broadly in its presentation in patients.

The final remarks sum up his view:

For readers familiarizing themselves with ME/CFS just now, as part of reading the present thesis, it may seem perplexing that etiology and pathophysiological mechanisms are still unknown and no effective treatment choices exist, despite a considerable amount of research studies since the rather precise description of the condition already in the 1800’s (3). Based on this fact, and the results from the studies in the present thesis, I would suggest that: (a) ME/CFS is not ONE illness entity, but consists of several subsets of patients with differentiated illness mechanisms, and; (b) contextualizing ME/CFS from an ACT-based behavior medicine perspective and; (c) understanding it from a sickness behavior perspective is of evident value in order to: (d) alleviate suffering and promote quality of life....

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.

 

[Arnie Pye]

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

 

[Three Chord Monty]

It's all bad.

 

[hinterland]

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

seems to be favouring ACT

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

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

ACT differs from CBT in that instead of challenging distressing thoughts by looking for evidence and coming up with a more rational response (CBT), in ACT, the thought is accepted as a thought, e.g. "I'm having the thought that this boat is going to sink", and then defused using a variety of techniques, which may include mindfulness, metaphors and language.

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!

 

[NelliePledge]

“new improved” psych approach with a new brand to keep the commissioners interested and make people who might have heard negatives about CBT think they’re getting something different when basically just the label has changed

 

[rvallee]

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.

 

[Arnie Pye]

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

Thanks @hinterland

 

[alktipping]

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.

 

[Sean]

However, recently the condition has been implicated as a chronic sickness behavior state. That is, the adaptive changes in brain and behavior commonly following acute infection (experiences of malaise, fatigue, brain fog and so forth) seem to have become chronic and thus maladaptive,...

How original, and free from spin.

NOT.

Although it has given rise to much debate and critique from patient organizations,

The failure to acknowledge that critics include many established senior researchers and clinicians can be called straight fraud at this point in the history of it all.

There are no excuses left.

 

[James Morris-Lent]

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.

 

[feeb]

I did get a chuckle out of this bit:

Finally, sickness behavior processes may guide future research in the differentiation of ME/CFS illness subtypes, as indicated by the level of subjective sickness behavior reported in ME/CFS which is equal to the level found when healthy human subjects are injected with bacterial endotoxin to cause transient sickness behavior in an experimental setting.

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?

 

[Jonathan Edwards]

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.