Utsikt
Senior Member (Voting Rights)
They seem to believe that adjustment disorder is a thing, and they also seem to believe that giving someone sick leave is going to make them sick for longer. Sounds like Wyller and Reme in Norway.
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Big news from Sweden: Fatigue diagnosis to be disappeared
- Thread starter mango
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Utsikt
Senior Member (Voting Rights)
Fair enough.
They are right about ED and wrong about ME/CFS. And we can prove it. So the fact that they managed to get rid of ED doesn’t mean that they will succeed with ME/CFS.
ME/CFS has researchers working on it. Massive genetic studies - one of which will publish before August. Patient organisations. People like you and MittEremitage and many others.
What does ED have?
I’m by no means thinking that it’s going to be easy to stop them. They have the advantage of being on the inside.
But they are doing so many things wrong along the way that it will catch up with them eventually.
MittEremltage
Senior Member (Voting Rights)
Yes, and one of the doctors recently promoted the Oslo networks manifest in the same paper:
”For the general practitioner, what is said in the article means that we should be cautious with the diagnosis of ME/CFS and that we can now refer to a large group of colleagues and researchers when we can say: 1. There is no reason to distinguish ME/CFS from other chronic fatigue. 2. We need to meet these patients with a broad perspective that includes aspects of biological, psychological and social factors. 3. Patients need to be helped to think in a different way than that all exertion is dangerous, so that they can gradually resume normal activities. “Stay active!” 4. In the absence of the opportunity to meet people who have recovered from chronic fatigue syndrome, a reference to the patient stories at Recovery Norway can provide new hope. 5. In the general medical consultation, we need to face any thoughts that the patient may have about a negative prognosis.”
https://allmanmedicin.sfam.se/p/all...riga-trotthetstillstand/1919/1587765/57081593
Reme and other Oslo network members are partners with Lindsäter in the Trötthetsstudien.
https://mitteremitage-wordpress-com..._sl=sv&_x_tr_tl=en&_x_tr_hl=sv&_x_tr_pto=wapp
mango
Senior Member (Voting Rights)
ED also has researchers working on it, including big studies with long term follow-ups. They have specialist clinics and patient organisations and support networks. They have access to support groups through the healthcare system. They have guidelines for insurance medicine, and clinical guidelines for primary care. They have treatment options, and before you say they are "bogus" let me just remind you that a lot of people are actually helped by them (in fact, all my friends and aquaintances who have had ED over the years have been able to return to work after time off and with treatment. None of my ME have been able to back to work, and several of them are not alive anymore). They have what is accepted as validated tools to measure functionality and symptoms. They have a diagnosis that has been pretty much well accepted until now (which ME never has been). They have well-known patient advocates. Since most of them recover, they have lots of recovered knowledgeable and understanding people advocating for them. They have lots of family and friends advocating for them and supporting them, because in contrast to ME ED is a very relatable illness. Lots of books have been written about ED. They have recognition, and as a diagnosis I dare say it's way more accepted and known in Sweden compared to ME or LC - both in healthcare and among people in general. They have understanding employers and company healthcare initiatives to support them. They are widely accepted in the chronic illness community, which pwME are not.
I could go on and on, but you could google too.
Utsikt
Senior Member (Voting Rights)
The fact that people get better doesn’t mean that the treatments caused the improvement. This is the same issue as with LC or PVF.
And what’s the scientific quality of these studies you mention? Can you link any of them?
Utsikt
Senior Member (Voting Rights)
And it should be the other way around?
mango
Senior Member (Voting Rights)
I'm afraid I don't have the time to look up all the links for you, sorry.
You can find them in exactly the same way as you would find scientific ME studies online.
Same keywords as I mentioned earlier: exhaustion disorder, utmattningssyndrom, utmattningsdepression, utbrändhet.
mango
Senior Member (Voting Rights)
It is what it is. I wouldn't wish on anyone to be treated as appallingly as pwME are, so no.
Utsikt
Senior Member (Voting Rights)
Just to be clear, neither do I.
Am I being a bit bonkers in saying it seems almost as if -removing the disorder part from the name, exhaustion is still a thing in its own right too if you terribly overwork humans - bps are trying to move to a new world where the ‘word’ as it understood of exhaustion is removed, to be replaced with the term ‘fatigue’ that they’ve warped the meaning of (from eg tired soldiers after 5day training, utter exhaustion due to illness, to ‘a state of mind’ and ‘something you need to gently walk off’)
starting with a dumping pot of taking the overworked and collapsed seriously and giving pragmatic help that gives them a fighting chance which might include those with physical illnesses and then being open to looking into physical illnesses from there … is very different to signing over some ludicrous dystopia of ‘humans can’t be overworked and tiredness is in the mind as is being injured if someone hurt you it’s not the consequence of the perpetrator but the responsibility of the victim to have perceived it differently to not be hurt etc attitude’ that bps really is. I don’t think many of the psychosomatic people even believe their own bs that it’s intended to help anyone anyway btw I think it’s just your usual propaganda cover for what they really mean which is ‘don’t give it the time of day’ and the label is just used to weaponise mental health powers to weaken their testimony rather than because they think any of it helps.
I also think their CBT is about reframing those without the illnesses mindset to justify immoral behaviour by DARVO ing truth to pretend it’s ’good Intentions’ and those receiving it ‘are deserving’ . I do think they are deluded enough to think ‘these ill people’ need to be ‘dealt with’ and to believe in coercion where if brainwashing won’t force them to carry on even as their bodies break then we will lock them up for it or abandon them.
I guess that word exhaustion is enough of a distinction in understood meaning by laypersons and onomatopoeia vs what they got away with with fatigue that even bps decided it would be easier target for them to lobby to get rid of it rather than just use tactics to try and take it over and warp it from the inside
- and that maybe research and staff has been sturdy enough on Exhaustion Disorder that they feel wiping it from the Google system by getting rid of the diagnosis and area altogether because cracking into it if it had more quality standards/rules so they couldn’t warp the playing field to their bad low quality research and would have to compete on normal terms might be part of it too?
but I don’t know how mixed some of the ideas and research under Exhaustion Disorder actually are?
and if there are better more open-minded and serious researchers in it?
That’s outrageous - how does this happen, is it political that someone unqualified can inveigle onto it?
Utsikt
Senior Member (Voting Rights)
I imagine she probably knows someone involved and said she’s interested to be a part of it.
It might help requests for better support for me/cfs and what that looks like if an illness like ED has its current blueprint rather than the comparator bucket maybe being worse I can imagine
and if me/cfs isn’t an option in Sweden because of issues and you’ve been dumped in a bucket I can see the terror of being dumped in a worse one - which sounds like the potential alternative bps are lobbying to create
It really is all just propaganda being allowed to charade political selling of ‘how we’d like the world to be’ under a very thinly veiled pretence there’s actual medicine or science or facts behind it
I mean it’s not just seen it before, it’s basically the only thing these people do/that’s their job/M.O. so I know I’m repeating the obvious
it’s still infuriating how if it’s what is convenient for other people to hear or they can’t be bothered either the effort of if it’s not right at least objecting to people just saying fibs for the sake of not having a post-truth world (it all starts somewhere) then only the target of it ends up calling it out
MittEremltage
Senior Member (Voting Rights)
This is exactly Lindsäter's intentions. I have written about it, among other things, in this post.
https://mitteremitage-wordpress-com..._sl=sv&_x_tr_tl=en&_x_tr_hl=sv&_x_tr_pto=wapp
There is also a lecture with her in English about this from October 2023 (scroll down to lecture named ”Dags att tänka om kring utmattningssyndrom: Kan svår trötthet ses som en transdiagnostisk symtomdimension?” In English ”Time to rethink ED: Can severe fatigue be seen as a transdiagnostic symptom dimension?”
There is plenty to read about the coming study on my blog:
https://mitteremitage-wordpress-com..._sl=sv&_x_tr_tl=en&_x_tr_hl=sv&_x_tr_pto=wapp
There is also a dedicated thread here on S4ME about the study:
https://www.s4me.info/threads/chara...s-in-primary-care-ifas-lindsäter-et-al.42260/
mango
Senior Member (Voting Rights)
I'm really not trying to make a scientific argument about the recoveries or the treatments. In my reply to you I was only trying to convey the difference between ED and ME in Sweden on a very human everyday level, from my perspective. I was only trying to answer your question as I understood it.
No need to lecture me about the difference between anecdotes and scientific evidence.
I have personally experienced the differences between having an ED diagnosis and a ME diagnosis, since I was misdiagnosed with ED at one point. I've experienced the differences in how you are treated by the healthcare system, employers, the social security system, the administrative courts, friends and family and people in general, and so on. I'm doing my best to share this from my own lived experience as well as what I've seen several of my friends go through over the years.
I strongly believe that you need to be aware of these aspects too in order to be able to understand the research and the studies and the policy changes in their full context. It's all interconnected.
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MittEremltage
Senior Member (Voting Rights)
We have no idea - there a lot strange things going on. Blogposts from July 2024 and till now in this link…(to much brainfog to explain it all in english right now, but ask me questions)
https://mitteremitage-wordpress-com..._sl=sv&_x_tr_tl=en&_x_tr_hl=sv&_x_tr_pto=wapp
Peter T
Senior Member (Voting Rights)
Thank you @mango and @MittEremltage for communicating the vulnerabilities of people in Sweden to these ideological and political machinations. The power imbalance people with ME/CFS experience in all aspects of our life from the private to the public is so exhausting.
I do think it is important we try to understand what is happening in countries world wide.
I do think it is important we try to understand what is happening in countries world wide.