Exhaustion Disorder: A Scoping Review of Research on a Recently Introduced Stress-Related Diagnosis, 2022, Lindsäter et al

Elin Lindsäter, Frank Svärdman, John Wallert, Ekaterina Nikolaevna Ivanova, Anna Söderholm, Robin Fondberg, Gustav Nilsonne, Simon Cervenka, Mats Lekander, Christian Ruck

ABSTRACT

Background
Symptoms related to chronic stress are prevalent and entail high societal costs, yet there is a lack of international consensus regarding diagnostics and treatment. A new stress-related diagnosis, Exhaustion Disorder (ED), was introduced into the Swedish version of ICD-10 in 2005. Since then, use of the diagnosis has increased rapidly.

Aim
Create the first comprehensive synthesis of research on ED to report on the current state of knowledge.

Method
A PRISMA-guided scoping review of all empirical studies of ED was conducted. Searches were run in the Medline, PsycINFO, and Web of Science databases. Data were systematically charted and thematically categorized based on primary area of investigation.

Results
Eighty-eight included studies were sorted into six themes relating to lived experience of ED (n = 9), symptom presentation and course (n = 13), cognitive functioning (n = 10), biological measures (n = 24), symptom measurement scales (n = 3), and treatment (n = 29).

Although several studies indicated that individuals with ED experience a range of psychiatric and somatic symptoms beyond fatigue, robust findings within most thematic categories were scarce. The limited number of studies, lack of replication of findings, and methodological limit ations (e.g., small samples and scarcity of specified primary outcomes) preclude firm conclusions about the diagnostic construct.

Conclusions
More research is needed to build a solid knowledge base for ED. International
collaboration regarding the conceptualization of chronic stress and fatigue is warranted to acceleratethe growth of evidence.

https://psyarxiv.com/m4w9x/

(ETA the authors' names.)

 

Opinion piece about exhaustion syndrome in Swedish newspaper DN, by the authors of the research article.

DN Debatt. ”De utmattade måste få tillgång till rätt vård”
https://www.dn.se/debatt/de-utmattade-maste-fa-tillgang-till-ratt-vard/

Forum threads on the biomarker studies here and here.

 

P.S. The main reason I keep posting about ED here on the forum is that in countries other than Sweden, many (or most?) pwED are probably being lumped in under the CFS umbrella and/or MUS. Also because it's such a common misdiagnosis for pwME, and the currently recommended treatment for ED is basically CBT + gradually increased activity...

 

So Swedes have Exhaustion Syndrome.

In Denmark there seem to be a lot of people on sick leave with a diagnosis of Stress.

And elsewhere people get Burnout.

What's the difference between all these? If any.

This is confusing even before adding CFS or MUS to the mix.

 

Don't forget FND as well.

 

It's awful how they admit there is basically no evidence for it, other than misusing an invalid code for a number of years, and they conclude that... they must build the evidence to promote its growth. They have completely lost sight of what healthcare is about. They only focus on managing resources, funding and facilities. Patients have become completely irrelevant in modern healthcare, a secondary issue at best. They will even invent false concepts so they don't have to work on real ones, will literally make up fake patients even though modern healthcare doesn't even manage to meet half the needs that exist out there.

One reason why chronic illnesses are discriminated is because the concepts are "vague", even though they aren't. This is far more vague, and yet no one objects to its vapidity, making it clear that there are no real concerns about this.

Literally anything can be framed as stress. And is, both theoretically and in practice. When literally anything can be a cause in a theory, nothing is. The line between scientific medicine and alternative medicine no longer exists when medicine abandons science, finds it superfluous and an unnecessary burden. What a disaster, this is what complete lack of accountability over decades leads to: insular mutual admiration societies unable to fulfil their primary obligations, wasting time and resources they don't have obsessing with problems they invent instead of working on real ones.

 

Related podcast episodes, in Swedish, published by Karolinska Institutet:

 

Karolinska Institutet also has this article from 2020 about Lindsäter's thesis on CBT for exhaustion disorder (12 weeks, online).

KBT för utmattningssyndrom ger effektiv symtomlindring
https://nyheter.ki.se/kbt-for-utmattningssyndrom-ger-effektiv-symtomlindring

Lindsäter' thesis with links to the mentioned studies:

Cognitive behavioral therapy for stress-related disorders
https://openarchive.ki.se/xmlui/handle/10616/46983

This research has been partially funded by Stressforskningsinstitutet (the Stress Research Institute, Stockholm University), which is also funding the currently ongoing Andreasson & Jonsjö ME/CFS study.

 

Another opinion piece in the Swedish newspaper DN, by the authors of the research article.

DN Debatt Repliker. ”Behandling av utmattade måste bygga på vad som hjälper”
https://www.dn.se/debatt/behandling-av-utmattade-maste-bygga-pa-vad-som-hjalper/

("Healthcare choice" = Vårdval Stockholm is a patient choice system in Stockholm County. The system means, among other things, that the Stockholm County Council authorises healthcare providers in various areas of care, and that the county's patients then have the opportunity to choose which clinic or other healthcare provider they want to turn to. It includes both private and government owned clinics/providers.)

 

Short news article in a web magazine created by journalism students at Stockholm University, Sweden.

Dags att utreda utmattningssyndrom
https://sites.jmk.su.se/laget/dags-att-utreda-utmattningssyndrom/6180

 

Is it safe to assume that Swedish long haulers, and pwME, will be re-classified with this nonsense?

Watching medical professionals at work should not carry roughly the same overall look as seeing someone piss drunk making a fool of themselves. And yet here we are. How did this all happen? Seriously.

 

Lots of long haulers have probably gotten misdiagnosed with exhaustion disorder already.

Lots of us pwME have been misdiagnosed with exhaustion disorder, especially in the first 6 months after onset. This is a well-known fact. One common reason is that doctors very often don't know enough about ME, and/or that they "don't believe in ME". It's also not uncommon that doctors wrongly believe that ME and ED are the same, that the only difference is that "it's called ME if the patient hasn't recovered after 6 months".

I suspect lots of people with exhaustion disorder have been misdiagnosed with ME as well.

Exhaustion disorder as a diagnosis/illness is much much more accepted, both by healthcare professionals, government agencies including the Social Insurance Agency, politicians and people in general. ED doesn't carry the same stigma, pwED aren't marginalised or discriminated against like pwME are.

I, personally, don't think it's a bad idea at all to separate this kind of stress related fatigue and depression from ME when it comes to diagnosis, research, treatment etc. But of course I agree with Nilsonne et al that the diagnosis as a concept has to be based on solid science, validated etc.

Based on my own personal experiences and observations, I'd say that the people I used to know over the years who had ED clearly suffered from something very different than I do. They couldn't relate to my experience of being sick any more than I could relate to theirs. They all responded totally differently to treatment (short period of sick leave, anti-depressants, CBT, gradually increased activity and various life-style changes including diet, exercise, re-evaluating their values and priorities, changing their jobs etc) and they all recovered with time.

What gives you the impression that they might want to change the diagnosis of pwLC and pwME to ED? That's not how I read this. If anything, I think the tendency would be to rediagnose pwED with depression? But I doubt it. ED used to be called "exhaustion depression" ("utmattningsdepression") in the beginning.

 

Those of you who aren't familiar with Gustav Nilsonne's work, I'd encourage you to have a look, especially at the meta-science side of things. I think you might be pleasantly surprised.

https://twitter.com/GustavNilsonne

"My research in meta-science concerns transparency, reproducibility and openness in science."
http://nilsonne.net/about/

 

I forgot to add, another reason that pwME might wrongly have an ED diagnosis on paper is that many doctors know that the Swedish Social Insurance Agency very often denies the fact that ME can be very disabling and significantly affect a person's ability to work. If it says ED instead of ME on your sick note from the doctor, you have a much better chance at being granted social security payments, at least in the short term.

There's also official guidelines for sick leave, ability to work and other medical insurance policies for ED by the National Board of Health and Welfare:
https://roi.socialstyrelsen.se/fmb/utmattningssyndrom/546

There are no such guidelines for ME.

ETA: My impression is that ME is, weirdly, generally perceived as a more recent and much less established diagnosis/illness than ED in Sweden. Everyone knows what ED is, many have heard of chronic fatigue syndrome (and have all the usual prejudices and preconceived ideas about it), but in comparison very few know what ME is.