Big news from Sweden: Fatigue diagnosis to be disappeared

So, they invented a vague bogus catch-all label, and it vaguely caught a lot of things, mostly because they're too lazy to bother doing real work. Something which the pre-existing vague concept of "mental illness" already did, though not any more, or less, reliably. Surely no one could have predicted that. Too bad they don't, like, employ smart people who could, like, know obvious things. Or whatever.

Looking forward to the next vague bogus catch-all label they will borrow or adapt, probably some slight variation on the BS somatic something distress or whatever, then start the entire cycle anew. Surely this time it will still not work, and eventually they will somberly look back at how labels are harmful, or whatever, feeling vaguely superior for not being overly labeled themselves.

The fact that medicine remains stuck at the "but, what is illness, really?" stage, yet go one making strong affirmations about what is and what isn't, based entirely on assertions that <current knowledge> is full and complete, is just plain silly.

This vaguely reminds me of how people talk about social safety nets, things like social security, and "ask questions" about how people used to survive back then, before all of this, as if the answer is that they did just fine. And the simple truth is: they usually didn't, not for long anyway, and in abject misery. It's an odd project, to increase misery. I'll never understand it, especially when it's mislabeled as 'helping'.

 

Only exhaustion disorder is actually much more specific in practice (diagnosis, treatments, sick leave, social insurance applications, social acceptance and social support etc) than any of the other "fatigue/tiredness" alternative concepts are.

These linked articles and the discourse happening at the moment is specifically trying to make things seem more vague and less science/knowledge/experience based than they are. It's part of the narrative. You need to see it all in its bigger context.

The same thing is happening around ME and long covid too. A quick look at the new clinical guidelines from the National Board of Health and Welfare will give you the impression that no one knows anything about ME or long covid, they haven't been researched at all, do they even exist, blah blah blah...

Who is trying to make it seem like diagnoses like ED, ME, LC etc aren't really real, it's all just "tiredness", nobody knows anything about them, it's just "normal life experiences" you have to learn to live with and learn to accept ("ACT is the only thing that will help!" = CBT/GET), to be on sick leave is harmful, you need to go back to work, you need to stop identifying yourself with your diagnosis, finding meaning in your life outside of your diagnosis will make your symptoms disappear so you can go back to work, etc etc etc. And why are they pushing this narrative?

 

I’m not Swedish so I’m not familiar with the scientific basis of ED. Can you provide a link to some info?

The fact that the approach they are taking is incorrect doesn’t make ED correct.

It’s very problematic that they are trying make everything about fatigue and fatigue about lifestyle, personal issues etc., but we have to attack the flaws of their world view instead of defending another flawed concept (if ED is flawed, that is. LC is far too unspecific to mean anything on its own)

 

No, sorry I unable to do that because it would be way too much work. You can search for scientific articles on "exhaustion disorder", and the Swedish term "utmattningssyndrom" as well as the historical terms "utmattningsdepression" and "utbrändhet". It's been an active field of research for decades now, I can't summarise that with a link, it's not possible.

You could also search the forum and check the links to sources I've already posted in my many posts on the subject over the years.

 

They are not even framing it as "fatigue" but as "tiredness".

 

To be honest, I'm getting the impression that many of you are completely missing the actual point, what this is really about. It's not actually about the diagnosis ED as such. It's much much bigger than that. Don't get lost in the details, but look at the bigger picture, the overall narrative and how it is connected to the political side of things, and how ME and LC is being tied into it.

@MittEremltage has been blogging about this extensively, please read her articles if you are still not getting it.

https://mitteremitage.wordpress.com/

 

My point is that we can’t defend ME/CFS by defending ED or any other made up concept about fatigue, tiredness, stress etc.

All they are saying is that it isn’t bogus concept X, it’s bogus concept Y instead. But it’s still all bogus. And it’s the bogus parts we have to counter. Like:

• CBT can fix it
• Rehab can fix it
• It’s caused by A, B or C
• All fatigue/tiredness/etc. has the same cause

 

I don't think anyone is missing your point @mango.
We appreciate that this disappearance of exhaustion disorder may be part of a systematic denial of the existence of ME/CFS in Sweden. But the only thing that seems to be specific about ED is that it is defined as due to burnout or stress. Since there is no scientific evidence that such a condition exists it is much better that the diagnosis is abbandoned so that people with ME/CFS or other chronic disabling conditions might have a chance of an appropriate diagnosis..

I looked up PubMed and found a recent review on Exhaustion Disorder:
Giorgio Grossi 1 2 3, Aleksander Perski 1 2, Walter Osika 3, Ivanka Savic 4 Stress-related exhaustion disorder--clinical manifestation of burnout? A review of assessment methods, sleep impairments, cognitive disturbances, and neuro-biological and physiological changes in clinical burnout. . Scand J Psychol. 2015 Dec;56(6):626-36. doi: 10.1111/sjop.12251.Epub 2015 Oct 23.

I don't see much evidence of science there. Just the same sort of ragbag of unconfirmed reports that we see so much of for ME/CFS.

There is no point in having a diagnosis based on a non-existent condition.

 

That's fine. I don't see that as an issue at all, because I haven't seen anyone trying to defend ME by defending ED. So far I actually haven't come across anyone actually trying to defend ED at all, except for some short comments by a few doctos in a couple of news articles.

All the critical comments I've come across so far (in media and social media) seems to be focused mainly on making sure that something else is put in place well before the changes take effect, so pwED won't fall through the cracks and are left without healthcare, social security payments and social/practical support.

 

I’m assuming they have to have regular communication with their GP already to receive benefits, so they can either:

1. Get another placeholder diagnosis that means just as little as ED
2. Get a proper assessment to get the correct diagnosis if there are obvious ones that were missed because the GP defaulted to ED

 

The biggest problem for me is that Lindsäter, who is part of the Oslo Consortium, has been made an expert on this issue by the media. She has previously stated, on behalf of the consortium, that ED and ME are the same thing, and is now leading the Fatigue Study where they lump everything together and treat it all as one. Now she is speaking as an expert claiming that ED will disappear as a diagnosis and says that she thinks that is a good thing.

So I believe, and know, that what @mango is trying to highlight is that we are in a situation in Sweden where more and more of our existence is being invaded by the BPS lobby, and that the next step could just as well be that they want to remove the diagnosis of ME and categorize us all under bodily distress syndrome. None of us defend the diagnosis of ED but are discussing this issue because the experts on ED also claim to be experts on ME, but are in fact part of the BPS lobby.

 

In terms of healthcare on the ground the situation may not be very different in the UK. The physicians who took a biomedical approach to ME/CFS have largely bowed out leaving a BACME-flavoured vacuum.

Things will change, though. The science will come.

 

They’ve already tried to do this with FND. Or they are actively trying to.

But compared to ED, they will actually face resistance because ME/CFS isn’t bogus. We would still have to fight, but it’s not going to be a walkover like with ED.

My main reason for believing this is because the same thing is happening in Norway. And the methods they have to use to try and get there are so blatantly corrupted and scientifically unsound that it becomes impossible to ignore for the various stakeholders.

 

Let's not make any hasty assumptions, please. It doesn't seem to be that simple. If you look at the discussions in relation to the material I've posted so far, you'll see that problems are already cropping up.

I'd imagine the biggest problem probably is what will happen to pwED when doctors no longer are willing to put them on sick leave because "exhaustion doesn't exist anymore" (because that's apparently literally how some/many doctors are understanding these changes). How will pwED survive if they are unable to work but won't be able to get social security payments anymore? I believe that's the real and most immediate risk and the kind of problem the whole discourse should be focusing on.

If the people in power see that they can make these changes for ED (without even having a loose plan of what comes after the disappearing of the diagnosis) and nobody protests, what will stop them from going ahead and implementing the changes for the rest of the conditions they view as "tiredness" including ME, LC etc?

 

I'm sorry for being blunt, but this is very naive and sadly I think you're wrong. They (Lindsäter et al, the National Board of Health and Welfare, and so on) are literally lumping ED and ME as if they are the same thing, "tiredness".

Again, I urge you to look at the new Swedish clinical guidelines for ME and LC if you still haven't realised this. They are literally claiming that there is no science, no knowledge, no nothing. They might as well be using your word "bogus". ME is just as "bogus" as ED according to these people.

 

Yes, exactly that. And we must remember that Lindsäter suddenly got to participate in revising the guidelines in the Stockholm region without any specialist knowledge or connection to ME care (beyond the Fatigue Study). And she was also invited to the meeting about the future of ME care in the region.

 

This article that you posted says that ED will not disappear until January 2028. Is that incorrect?

 

January 2028 is the date when the ICD system will be officially updated in Sweden.

As far as I can tell there is no plan for how this disappearing will happen between now and then (or beyond that), or what it will look like in healthcare settings or in the social insurance contexts etc. We just don't know, and that's a very big part of the problem.

 

Are there any indications towards ED being removed before ICD 11 is introduced?

 

I don’t know but some physicians at campaigning for stop using it now, in the latest number of a paper for physicians for example:

”Already today, there may be reasons to refrain from using the diagnosis of ED and instead specify other diagnoses within ICD-10.”

https://allmanmedicin.sfam.se/p/all...ngssyndrom-ar-borttagen/1919/1849165/60927491