Big news from Sweden: Fatigue diagnosis to be disappeared

mango

mango

Senior Member (Voting Rights)
Big news from Sweden... :cautious:

According to news articles in Psykologtidningen.se and DN.se yesterday, it has been confirmed that the diagnosis exhaustion disorder ("utmattningssyndrom, UMS") is set to be disappeared in Sweden and in WHO ICD-11 in 2028.

Utmattningssyndrom försvinner som diagnos
https://psykologtidningen.se/2025/03/17/utmattningssyndrom-forsvinner-som-diagnos/

Google Translate, English ("Fatigue syndrome disappears as a diagnosis").

Utmattningssyndrom tas bort: ”Tror det blir bättre”
https://www.dn.se/sverige/utmattningssyndrom-tas-bort-tror-det-blir-battre/

Exhaustion disorder, or "burnout", as a diagnosis only exists in Sweden, and is a separate diagnosis to ME/CFS (myalgisk encefalomyelit and/or kroniskt trötthetssyndrom, KTS).

It is usually described as "a stress related psychiatric disorder caused by long-term psychological stress that is often, but not exclusively, work related", which involves both physical and psychological/behavioural symptoms. It was entered into the Swedish version of WHO ICD-10 in 2005.

The ICD-10 code for exhaustion disorder is F438A. The diagnosis is classified under the category Adjustment disorders and reaction to severe stress (F43), which can be found in the chapter Mental disorders and syndromes and behavioural disorders (F00-F99).

This diagnosis used to be called "utmattningsdepression" (literally "exhaustion depression") in the 1990s, but officially changed names in 2003, and is colloquially known as "utbrändhet" (burnout).

I believe this very large group of patients is usually lumped in under the CFS umbrella in many other countries?

In Sweden (population approx 10,7 million) approx 20 000 persons are put on sick leave each year due to exhaustion disorder (source DN.se).

Here's what the official Swedish Healthcare guide 1177 says about exhaustion disorder (the definition, diagnostic processe and recommended treatments):
https://www.1177.se/sjukdomar--besvar/hjarna-och-nerver/utmattningssyndrom/

Exhaustion disorder has its own guideline in the National Board of Health and Welfare's set of guidelines for insurance medicine:
https://forsakringsmedicin.socialst...diagnoser/psykisk-sjukdom/utmattningssyndrom/

There's also a Swedish Wikipedia article on utmattningssyndrom:
https://sv.wikipedia.org/wiki/Utmattningssyndrom
 
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Elin Lindsäter, of the Oslo Consortium, is quoted in the article by Psykologitidningen (the psychologists' trade union and professional journal, Psykologtidningen is published by the Swedish Psychological Association).

Utmattningssyndrom försvinner som diagnos
https://psykologtidningen.se/2025/03/17/utmattningssyndrom-forsvinner-som-diagnos/
Auto-translate said:
Exhaustion disorder disappears as a diagnosis

[...] While [Elin Lindsäter] is fundamentally in favour of the change, she sees a risk that the resulting void will lead to hasty action and fragmentation with regional trends.

- ‘ICD-11 will not be introduced in the healthcare system until January 2028, so we have time to find solutions for those who have already been diagnosed. A government commission to investigate the situation appears to be underway.

In the long run, she believes that the removal of the diagnosis will lead to something good for patients, because the diagnostic criteria are relatively broad and vague and can cover many types of illness and disease. They are used in different ways across the country.

- Over the years, exhaustion disorder has been questioned and shown to hide several subgroups. Now there is an opening for us to become more specific in how we understand different people's suffering and to provide better treatments.

She believes that the diagnoses that will actually be used instead will largely depend on how the insurance medical guidelines are developed. According to Elin Lindsäter, the length of sick leave should not be governed by a specific diagnosis.

- If the guidelines will state that ‘if the patient has burnout, then they can be on sick leave for up to a year’, everyone will be diagnosed with burnout instead, and that is not a successful prescription. Some are extremely disabled and may need a longer sick leave, while for other patients it is downright harmful. What can be a solution are indicators that you need a longer sick leave, which is not diagnosis-linked.
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Do note that this isn't some isolated thing happening only in Sweden. Members of the Oslo Consortium seem to be involved, so it concerns all of you in Norway, UK and other countries as well.

If you do a search here on S4ME you will find a number of research studies by Lindsäter and others, and you will immediately see how it is all intertwined with ME for this group of BPS researchers and the political powers and insurance companies that back them.

Do check out @MittEremltage's excellent podcast Maran season 2 to learn more (all episodes are available to read on her blog, easily auto-translated to English). It's really really worth a listen/read, this is big and really needs to be talked about because it's affecting the ME and long covid/post covid communities in a major way.

https://www.s4me.info/threads/sweden-maran-season-2-how-did-we-end-up-here.40230/

https://mitteremitage.wordpress.com/category/maran/

Also make sure to read up on the fatigue studies happening at the moment, and note how they are lumping these diagnoses together (ME, long covid, exhaustion disorder, and more) for example this absolutely massive fatigue study by Lindsäter's team:

https://www.s4me.info/threads/characterization-treatment-and-long-term-follow-up-of-fatigued-patients-in-primary-care-ifas-lindsäter-et-al.42260/

Exhaustion disorder has been heavily discussed in Sweden on the political side of things for years and decades, it's a very common reason for sick leave (often lasting longer than 6 months, 1 year or more), and it has kept on increasing rapidly, which of course "costs money". There was a report a few months ago by the Social Insurance Agency, saying that it hit a record breaking high in 2024.

This change makes me wonder what is really going on behind the scenes,... how far along are things, and is ME going to be the next diagnosis to be disappeared?
 
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Exhaustion disorder is a common or very common misdiagnosis for people with ME, and I have personally experienced it too. This is yet another reason why this really is something we all should care about.

It has always been really difficult to get social security payments when you're on sick leave or otherwise unable to work due to exhaustion disorder. Especially seeing that it's very common to need more than 6 months off, and in Sweden there's a cut-off at 180 days, which often means that you simply won't get any money at all.

There's so so much more to say about this, and especially about the political side of things and the narrative that has been plastered all over the news for years and years,... and how it has been falsely lumped together with ME in statistics and politics etc, often by the Social Insurance Agency/Försäkringskassan. However, I'm in bad PEM at the moment and unable to add more to this thread for now. I hope somebody else is up to it, though?
 
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mango said:
It is usually defined as "a stress related psychiatric disorder caused by long-term psychological stress that is often, but not exclusively, work related", which involves both physical and psychological/behavioural symptoms. It was entered into the Swedish version of WHO ICD-10 in 2005.
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It seems appropriate that a concept of a condition defined in these terms should be abolished. It does not exist as a medical concept in the UK as far as I know.
 
Jonathan Edwards said:
It seems appropriate that a concept of a condition defined in these terms should be abolished. It does not exist as a medical concept in the UK as far as I know.
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Sorry for using the wrong words, the brainfog is extra thick today. Always feel free to correct me, everyone. It should have said "described" not "defined", I'll edit my original post.

Please read the actual official definitions with diagnostic criteria etc and read up on the current political situation around this diagnosis before forming an opinion, so you can make an informed comment.

Also, do note that there is apparently no plan as to what will happen to the people currently diagnosed with exhaustion disorder. Personally, I think it's hugely irresponsible to decide to disappear a diagnosis, and with it all the treatment guidelines and the decades worth of scientific research based knowledge about it, before you have even thought about what will happen to the people that will then become "undiagnosed".
 
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Diagnostic criteria for exhaustion disorder:

Stressrelaterad psykisk ohälsa - Utmattningssyndrom
https://viss.nu/kunskapsstod/vardprogram/stressrelaterad-psykisk-ohalsa

VISS auto-translate said:
Exhaustion disorder

A reaction to non-traumatic stressors that has been present for at least 6 months. The disease is mainly characterised by persistent mental and physical fatigue.

In order to be diagnosed with exhaustion disorer, all the following criteria must be met

1. physical and psychological symptoms of fatigue lasting at least two weeks, developed as a result of one or more identifiable stressors, which have been present for at least six months

2. a marked lack of mental energy dominates the picture. In conjunction with psychological distress:

decreased vigour
reduced stamina or
prolonged recovery time

3. at least four of the following symptoms have been present almost every day during the two-week period

difficulty concentrating or memory impairment
markedly reduced ability to cope with demands or to do things under time pressure
emotional lability or irritability
sleep disturbance
marked physical weakness or fatigue

4. symptoms cause clinically significant distress or impairment in work, social or other important functioning

5. The symptoms are not due to direct physiological effects of any substance.

6. If the criteria for major depression, dysthymia or generalised anxiety disorder are met at the same time, fatigue syndrome is listed only as an additional specification to the diagnosis in question.
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Over the years a lot of effort has been put into educating healthcare professionals about the difference between exhaustion disorder (a psychiatric diagnosis) and ME/CFS.

Forum threads:

https://www.s4me.info/threads/news-from-scandinavia.647/page-82#post-458628

https://www.s4me.info/threads/semin...gue-and-me-cfs-what-are-the-differences.2528/

https://www.s4me.info/threads/swede...-chronic-fatigue-sept-12th-and-oct-2nd.11134/

https://www.s4me.info/threads/swede...nguish-me-from-chronic-fatigue-burnout.13338/

Here's an example of some of what has been taught at these (in my opionion very useful and valuable) seminars:
https://www.s4me.info/threads/swede...om-chronic-fatigue-burnout.13338/#post-239230

The example is from this article, with Per Julin (arguably Sweden's currently most knowledgeable ME doctor/researcher):
https://ki.se/forskning/popularvete...nskapliga-teman/tema-somn/nyfiken-pa-trotthet
 
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mango said:
Please read the actual official definitions with diagnostic criteria etc and read up on the current political situation around this diagnosis before forming an opinion, so you can make an informed comment.
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I have read the useful background you have given to this mango, over the years so I am informed. The definition you give makes it clear that this is a bogus concept:

A reaction to non-traumatic stressors that has been present for at least 6 months. The disease is mainly characterised by persistent mental and physical fatigue.


We need bogus disease concepts to be abolished.
There will still be people with symptoms and I am very aware of what you have said previously about the situation in Sweden but nothing is achieved by perpetuating phoney diagnoses. Diagnoses are not the objective. Intelligent medical care is.
 
@mango I’m sorry but I don’t understand the issue here. It might be my ignorance of the topic? I’ll try to adresss some of the things that I suspect you might perceive as an issue, based on my experience from Norway. Apologies if I’m mistaken.

Why is it bad that they are going to remove ‘burnout’? The people that belong in that group by the current standards are going to be put in even broader groups like ‘depression’ or ‘fatigue’/‘exhaustion’.

All of the work that’s been done on differentiating burnout from ME/CFS still applies, because they key points about ME/CFS are that it exists, that it’s not psychological, what PEM is and pacing is, that GET/CBT/etc. should be avoided, etc.

As Julin said in one of your links:
Actually, the typical patient is fairly easy to diagnose. The sad thing is that they are often the most misunderstood, says Per Julin.
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So knowledge about ME/CFS seems to be the key, not knowing how to differentiate it from burnout specifically. If you know what ME/CFS is, you’ll automatically know what it isn’t.
 
Utsikt said:
@mango I’m sorry but I don’t understand the issue here. It might be my ignorance of the topic? I’ll try to adresss some of the things that I suspect you might perceive as an issue, based on my experience from Norway. Apologies if I’m mistaken.

Why is it bad that they are going to remove ‘burnout’? The people that belong in that group by the current standards are going to be put in even broader groups like ‘depression’ or ‘fatigue’/‘exhaustion’.

All of the work that’s been done on differentiating burnout from ME/CFS still applies, because they key points about ME/CFS are that it exists, that it’s not psychological, what PEM is and pacing is, that GET/CBT/etc. should be avoided, etc.

As Julin said in one of your links:

So knowledge about ME/CFS seems to be the key, not knowing how to differentiate it from burnout specifically. If you know what ME/CFS is, you’ll automatically know what it isn’t.
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Simply put, I believe this is a politically motivated step towards lumping exhaustion disorder, ME, long covid and other "fatigue" diagnoses into one bucket, putting a psych label on all of us and discontinue all sorts of medical care, support, treatment, research and recognition. ACT (which in reality is CBT/GET) will be the only thing offered, online in groups and through apps (cheap for the system).

If you look at all the other things that are currently going on, there's a lot of lumping happening, closing of clinics, intentional blurring of lines and erasure of severity (the new clinical guidelines for long covid and ME is one very telling example), huge fatigue studies (lumping these diagnoses) sponsored by insurance companies and the Social Insurance Agency, symptomatic treatments are being discontinued, biomedical science based knowledge is being swept under the rug, information/guidelines on websites are being updated to be more BPS as the biomedical specialists who wrote the earlier versions are quietly replaced with BPS authors, there's erasing of information about severe ME and the need for long-term sick leave, home help, assistive devices, and so on.

Similar tendencies are happening on the "biomedical side" too, even some of the Swedish top leading biomedical experts in ME and long covid have stopped using the name "ME" and are now only talking about "post-infectious conditions".

Exhaustion disorder has become a bigger and bigger problem for the politicians and the insurance companies including the Social Insurance Agency, since more and more people are unable to work due to stress-related mental health issues. So instead of actually trying to help improve people's health, they are making the problem "go away" (but not really) by disappearing the diagnosis and with it all the statistics etc. Nothing to see here, no data will be collected or analyzed.

Long covid is a really expensive problem too, so let's "get rid of" that problem too (but not really) at the same time.

And if very ill individuals then won't get well after doing CBT/GET in groups online, then it's of course because they don't want to get well, they choose to stay ill = they/we don't deserve any social security payments. The politicians are already pushing the narrative that we need to get motivated to get back to work, and stopping all social security payments is the best motivation to get us out of bed.

They can do this, because nobody cares that pwME and pwLC are being treated badly. Too stigmatized, too marginalized. People will let it happen to us, because they don't care.

So, from my perspective it's a massive problem if they end up lumping all diagnoses they see as "fatigue" into one psych bucket, and discontinue all diagnose specific research as well as our access to science based treatments, care and support.
 
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mango said:
Simply put, I believe this is a politically motivated step towards lumping exhaustion disorder, ME, long covid and other "fatigue" diagnoses into one bucket, putting a psych label on all of us and ending all sorts of medical care, support, treatment, research and recognition.
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It’s certainly a problem if they try to label ME/CFS and LC as generic fatigue diagnoses, but I don’t see how that’s connected to burnout because burnout is already characterised as a psychological fatigue/stress diagnosis.

The BPS-lobby in Norway tries to make everything about stress, like Wyller and Reme, so I feel like I’ve got some degree of understanding of what’s going on here.

And I feel like the only valid argument we can make is that ME/CFS (and the majority of LC) isn’t stress/fatigue. If anything, we should just continue trying to differentiate it from whatever the popular catch-all is named - it doesn’t really matter if it’s burnout or whatever.
 
Utsikt said:
It’s certainly a problem if they try to label ME/CFS and LC as generic fatigue diagnoses, but I don’t see how that’s connected to burnout because burnout is already characterised as a psychological fatigue/stress diagnosis.
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Have you looked at Lindstäter's new study? They are literally lumping burnout and ME and LC. Have a look at who is sponsoring the study, and how they are talking about it ("trötthet" = tiredness). There's tons of more information in @MittEremltage's podcast/series of articles Maran season 2, linked above.

https://mitteremitage.wordpress.com/trotthetsstudien/
 
Utsikt said:
[...] it doesn’t really matter if it’s burnout or whatever.
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That's literally their narrative/framing: it doesn't really matter if it's ME or LC or burnout or whatever. It's all just fatigue (which can be effectively and cheaply treated with CBT/GET).

P.S. And don't put them on sick leave or give them any medical/symptomatic treatments or tests, because that will only make them worse.
 
I know they are trying to lump ME/CFS together with anything else with fatigue.

We should vehemently oppose the attempted removal of ME/CFS as a distinct concept.

But I don’t see why we should be opposed to the removal of burnout because burnout doesn’t make any sense in the first place.

How they think of fatigue and tiredness in general is also problematic, but it’s a different issue than wether or not ME/CFS is its own thing.

If they say ‘all fatigue can be cured by CBT/GET’ we should say:
  1. That’s not the case for the fatigue related to ME/CFS, and the hallmark of ME/CFS is PEM and not fatigue.
  2. Their understanding of fatigue in general is speculative, un-evidenced, self-serving, and opportunistic.
It’s different battles even though they have certain elements in common.
 
An article in SFAM's journal AllmänMedicin, issue 1-2025 published a couple of weeks ago(?).

ICD-11 i svensk översättning ute på remiss – diagnosen utmattningssyndrom är borttagen
https://allmanmedicin.sfam.se/p/all...ngssyndrom-ar-borttagen/1919/1849165/60927491


("SFAM, the Swedish Association of General Practice, is the professional and scientific college of general practitioners (family physicians) in Sweden, a non-profit organisation with about 2000 members. SFAM is affiliated to the Swedish Society of Medicine (Svenska Läkaresällskapet) as well as the Swedish Medical Association (Läkarförbundet). Main areas of interest for SFAM are continuing professional development, training of future GPs, assessment of competence, quality improvement and research in general practice/family medicine.")
 
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