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

[mango]

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.)

 

[mango]

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/

"The exhausted must have access to the right care"

Nine researchers: the knowledge gaps that existed at the time of the introduction of the diagnosis of exhaustion disorder are still as large. New criteria are now being developed without first being scientifically evaluated. What constitutes appropriate treatment is unclear. There is a high risk of unsafe care and unnecessary suffering for thousands of individuals.

Exhaustion disorder, a diagnosis that did not exist in Swedish healthcare before 2005, is now the single most common diagnosis of sick leave in Sweden and accounts for more sick leave than all cancers combined. The diagnosis, but not the symptoms it describes, exists only in Sweden. [...]

Recently, under the headline "Exhaustion disorder shows up in blood tests", it was reported that biomarkers clearly distinguish the fatigued from the depressed and healthy, and that the markers could be used clinically. However, in our summary, our conclusion is that there is no clear evidence of unique biological findings for the patient group with exhaustion disorder. [...]

Another common perception is that people diagnosed with exhaustion disorder have detectable brain damage. Again, there is no research support for such a dramatic conclusion. [...]

The diagnostic criteria for fatigue syndrome have not yet been scientifically evaluated and we therefore do not know whether they are optimally designed. [...]

Our conclusion from the published treatment studies is that there is a lack of evidence to clearly recommend a specific treatment today. [..] the lack of knowledge about the interventions [such as multimodal rehab] poses a risk to patients' health which, in the worst case, can prolong the course of the disease. [...]

The lack of international acceptance of the diagnosis of fatigue syndrome is an important explanation for the lack of knowledge. [...]

What should be done?

● The National Board of Health and Welfare should be mandated by the government to investigate the diagnosis of exhaustion disorder and ensure that critical knowledge gaps are addressed so that safe and effective care can be provided to patients.

● New diagnostic criteria should be scientifically tested before they are used in care.

● Treatments without evidence, such as multimodal rehabilitation, should not be procured or included in care choices.

Forum threads on the biomarker studies here and here.

 

[mango]

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...

 

[Ravn]

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.

 

[Andy]

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

Don't forget FND as well.

 

[rvallee]

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.

 

[mango]

 

[mango]

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

Medicinvetarna #93: Exhaustion Disorder: What do we know today?

The diagnosis of exhaustion disorder has continued to increase. What do we really know about the boundary between fatigue and depression, and does research have answers about what treatment helps? Psychologist and researcher Elin Lindsäter has often participated in the discussion, when she is not working clinically with, among other things, stress-related mental illness in primary care.

Medicinvetarna #93 can be seen as a companion to and follow-up to episode #36: Who gets exhaustion disorder?

Elin Lindsäter is a licensed psychologist and doctor of medicine at the Department of Clinical Neuroscience at Karolinska Institutet. She is also employed at Gustavsberg Health Centre in Stockholm, where she has worked for several years with education, method development and implementation of evidence-based treatment for various psychological conditions. In addition to exhaustion disorder, these can include depression, anxiety disorders and stress-related illnesses.

She has highlighted in various contexts the uncertainties surrounding the diagnosis of exhaustion disorder and the lack of scientific evidence to recommend different treatments.

- These patients are suffering and need help. But today there is no evidence to know how we can best help them," says Elin Lindsäter.

The article in Filter referred to in this section was featured in #83, published in November 2021

https://ki.se/forskning/medicinvetarna-93-utmattningssyndrom-vad-vet-vi-idag

Medicinvetarna #36: Who gets exhaustion disorder?

Exhaustion disorder isn't caused by stress, it's caused by a lack of recovery. Professor Emerita Marie Åsberg put fatigue syndrome on the research map in the 1990s. Listen to a conversation with one of the world's foremost experts on how to avoid hitting the wall. The episode was published on 25 March 2020.

Exhaustion disorder is an illness that involves fatigue, problems with memory and concentration, and reduced stress tolerance. It was already present in the 19th century but was called neurasthenia at the time.

- Even then, it was thought to be due to the increasing pace of society. I myself believe that the conditions for living were greatly affected when we got electric light,' says Professor Emerita Marie Åsberg.

Marie Åsberg is Professor Emerita of Rehabilitation Medicine at Karolinska Institutet's Department of Clinical Sciences, Danderyd Hospital. She helped develop the criteria for the diagnosis of exhaustion disorder and has been researching the condition for decades. Marie Åsberg believes that we are built to withstand periods of stress as long as we can recover and sleep. In professions where recovery is often not possible, for example among teachers or carers, the risk of suffering is therefore much higher.

In Medicinvetsrna, she talks about how the condition shows up in the brain, how it differs from depression, and how she herself has dealt with stress over the years: 'I'm good at sleeping!

https://ki.se/forskning/medicinvetarna-36-vem-far-utmattningssyndrom

 

[mango]

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

CBT for exhaustion disorder provides effective symptom relief

Stress-related mental health conditions such as exhaustion disorder or adjustment disorder can be effectively treated with cognitive behavioural therapy, both delivered via the internet and in traditional formats. This is the finding of a new doctoral thesis from Karolinska Institutet that evaluated the effect of a 12-week CBT treatment.

Stress-related ill health is a widespread problem in Sweden and internationally. People who experience stress for long periods without proper recovery often show progressively increasing mental and physical symptoms and disability, and primarily seek help from primary care. Diagnoses such as adjustment disorder and exhaustion disorder are common and associated with high costs for the individual, for health care and for society at large. Despite this, there is still a lack of scientifically based guidelines on how to treat these conditions.

Cognitive behavioural therapy (CBT) has the most research support for reducing symptoms of stress, but access to treatment is low and knowledge about the treatment of patients with clinical stress diagnoses is still lacking.

Can be delivered online

- Our studies suggest that even patients diagnosed with exhaustion syndrome can be very well helped by a CBT treatment that is only 12 weeks long and can be delivered over the internet, says Elin Lindsäter, a psychologist at Gustavsberg Health Centre and a PhD student at the Department of Clinical Neuroscience at Karolinska Institutet.

In her thesis, she has investigated the effect of a new CBT treatment for people with stress-related illnesses. The thesis contains two randomized controlled trials, one examining the effect of the treatment in the usual format and one examining the effect of the treatment as therapist-led internet treatment (IKBT).

Symptom relief and improved quality of life

Results from both studies showed that the 12-week treatment was highly effective in reducing symptom burden and increasing quality of life. Both patients diagnosed with adjustment disorder and fatigue syndrome were clearly helped, and the good results were sustained at follow-ups six months and one year after completion of treatment. However, the treatment did not result in any significant improvement in sickness absence or work capacity.

The combined results of the thesis provide important information on how the common conditions of adjustment disorder and exhaustion disorder can be treated in primary care. A health economic evaluation showed that IKBT was a cost-effective treatment.

Can reach a huge number of patients

- The CBT studied is relatively short and easy to administer. If implemented as an online treatment in primary care, it can reach a large number of patients at an early stage of symptom development, without increasing costs for the health care system or society at large,' says Elin Lindsäter.

The research has been carried out with the support of/collaboration with the Graduate School of Health Sciences, Försäkringskassan, Vinnova, the Stress Research Institute and the Stockholm Stress Center. Specific collaborations and funding are given in the respective publications of the thesis.

On 14 February 2020, Elin Lindsäter will defend her thesis "Cognitive Behavior Therapy for Stress-Related Disorders.

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.

 

[mango]

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/

"Treatment of the exhausted must be based on what helps"

Nine researchers: healthcare choice shouldn't order things we don't know if they work. A major research effort is now needed on how to understand the symptoms of the exhausted.

In our article, we described the unclear state of knowledge regarding exhaustion disorder and highlighted the unreasonableness of the Stockholm Region mandating contractors to provide a specific form of treatment, multimodal rehabilitation, for which there is no scientific support.

Now two representatives of one of the units providing this treatment within the framework of Stockholm's healthcare choice have responded and we thank them for the opportunity to clarify our position.

Fellinger and Wigge seem to partly agree with us when they write that "there is admittedly a lack of well-controlled studies with evidence in this area" and "it is problematic that the diagnosis has not been scientifically evaluated". On this basis, we find it difficult to understand why health care choice should nevertheless force health care providers to adopt a multimodal rehabilitation model, if we agree that there is a lack of support for this particular comprehensive and costly intervention [...].

We agree that it is desirable that the treatments already provided are evaluated and that experience is not lost. The fact that this evaluation has not already taken place is worrying. When we are dealing with one of the largest diagnostic groups in Sweden, it is not enough to evaluate before and after treatment in routine care, but randomised studies with control groups are needed to draw firm conclusions about what helps.

("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.)

 

[mango]

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

Time to investigate exhaustion disorder

Although the diagnosis of "exhaustion disorder" has been in use since 2008, it does not have a solid scientific basis. That's why the Stockholm Region has awarded stress researcher Gustav Nilsonne and his team SEK 2 million to investigate the diagnosis.

Gustav Nilsonne is an associate professor of neuroscience and has conducted research on stress and sleep, among other things.

Exhaustion disorder is caused by prolonged stress. The diagnosis is usually caused by an intense working life, but can also be due to a stressful private life.

"Sometimes no specific cause can be found. The diagnosis cannot be confirmed with any 'objective' examination methods such as blood tests," writes stress researcher Gustav Nilsonne in an email to Läget.

The most common symptoms are exhaustion, problems with sleep and difficulty doing things that require a lot of thought. Exhaustion disorder is currently a leading cause of sick leave in Sweden, especially in the health care sector.

But despite the fact that so many people in Sweden are on sick leave, the diagnosis of exhaustion disorder is not used in any other country. However, Gustav Nilsonne, a researcher on stress, believes there are people in all countries who suffer from exhaustion disorder. But they are instead diagnosed with depression or chronic fatigue syndrome.

According to the researcher, the aim of the project is to determine whether the diagnosis is useful or not. This is done through a process called "validation". All previous research on the diagnosis is compiled and as many documented cases as possible are examined. Because exhaustion disorder has causes and symptoms similar to depression, they will determine if there are enough differences for a separate diagnosis.

 

[rvallee]

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.

 

[mango]

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

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.

 

[Sean]

The games with words, statistical thresholds, and patients' lives continues.

 

[mango]

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/

 

[mango]

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.