mango
Senior Member (Voting Rights)
I posted about this issue in the News from Scandinavia thread last week, but as things keep unfolding I think it deserves its own thread.
A massive thank you to patient advocates @MittEremltage, @Clementine and others, for digging into this and doing a phenomenal job trying to hold the responsible people accountable
Much appreciated!
ME/CFS: Myalgisk Encefalomyelit/Chronic Fatigue Syndrome, kroniskt trötthetssyndrom
https://viss.nu/kunskapsstod/vardprogram/me-cfs
A massive thank you to patient advocates @MittEremltage, @Clementine and others, for digging into this and doing a phenomenal job trying to hold the responsible people accountable

ME/CFS: Myalgisk Encefalomyelit/Chronic Fatigue Syndrome, kroniskt trötthetssyndrom
https://viss.nu/kunskapsstod/vardprogram/me-cfs
New blog post by @MittEremltage, highlighting some really worrying changes in Region Stockholm, seemingly linked to the Oslo Consortium.
Region Stockholm uppdaterar vårdprogram för ME med ovetenskapliga påståenden om KBT och gradvis utökad aktivitet
https://mitteremitage.wordpress.com...staenden-om-kbt-och-gradvis-utokad-aktivitet/
Auto-translate:
"Region Stockholm updates ME guidelines with unscientific claims about CBT and gradual increase in activity
What the hell is Region Stockholm doing?
The guidelines for Myalgic Encephalomyelitis (ME) on viss.nu has been updated in recent days. Not many changes but what I see is changed for the worse.
Like this under the heading Management treatment:
"Curative treatment is currently lacking, but some patients recover after, for example, CBT or gradually increased physical activation."
This statement is baroque. As far as I know, there is no evidence to support that CBT and gradually increased activity cures ME. However, there is evidence that physical activity can be harmful. [...]
It is a direct patient safety risk!
When I take a closer look at who is responsible for the guidelines and compare it to previous versions, I see a new name for the context. It is the psychologist Elin Lindsäter, who works at Gustavsberg Health Centre and Karolinska Institutet. She is also part of the so-called Oslo Consortium, which I have written several posts about before. They have on their agenda to change the view of, among other things, ME from being a disease to being about incorrect thought patterns and fear of activity that maintains the symptoms. To overcome this, this group advocates CBT and gradually increasing activity.
Last autumn, we could hear the same Lindsäter advertising on Swedish radio for an upcoming study in Stockholm that she will be conducting to investigate CBT for, among other things, post-covid.
Lindsäter then shared SR's article with the following comment on her own Linkedin:
"Short report in Ekot today that gossips about the clinical study that I and my colleagues are preparing for in primary care in the Stockholm region. It is particularly important when the care choice for long-term pain, exhaustion disorder and ME/CFS is discontinued in 2025 that we equip and investigate new methods for identifying and treating severe fatigue/fatigue in the first line."
The change in the ME guidelines on viss.nu thus appears to be part of a larger plan.
At the same time as the region is updating its knowledge support with bizarre non-scientific claims, Stockholm's primary care is denying patients treatment on the basis that there is no evidence. There is an ongoing case of principle on this, which will now be discussed politically later this year."
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Another very important blog post by @MittEremltage, taking a detailed look at the seriously worrying changes to Region Stockholm's guidelines for ME/CFS. Do click through and read the whole article. Thank you so much, MittEremitage
Genomgång av ändringar i vårdprogram för ME i viss.nu
https://mitteremitage.wordpress.com...-av-andringar-i-vardprogram-for-me-i-viss-nu/
ETA: Summarised really well by a pwME on social media (auto-translated):
"The overall change in Viss.nu is to become vaguer, lumping ME with conditions that cause various forms of fatigue, and obscuring the situation and needs of the most severely ill."
More about this, in today's blog post by @MittEremltage. Much appreciated as always, thank you!A massive thank you to the independent activist/patient advocate(s) who contacted Viss.nu to request these changes, excellent effort! No thanks to RME (the Swedish ME Association) though, their silence is very telling...
Viss.nu har gjort vissa ändringar
https://mitteremitage.wordpress.com/2024/07/06/viss-nu-har-gjort-vissa-andringar/
Auto-translate:
"Viss.nu has made some changes
The sentence about CBT and GET in the guidelines for Myalgic Encephalomyelitis (ME) on viss.nu has been removed since yesterday afternoon. This is good, but unfortunately the rest of the problematic changes seem to remain. [...]
The remaining changes may seem small and insignificant, but taken together they give the guidelines problematic direction where more vague concepts about disease and treatment are allowed to take up space while important information about the most severely ill and PEM are now removed.
I hear that some of you are once again thinking that what has happened is due to ignorance. That those who updated the guidelines do not know enough about ME. But I would say that this is more about an ideological choice.
It's so clear that they're sort of pulling a fast one and trying to get things to slip through the net. Thinking that no one will notice. What has happened now follows the same pattern as with the autumn news from Stockholm University. They started publishing outright lies and then modified some things, but not everything, after our reactions.
It is so ugly because it is as far from a scientific approach as you can get.
This is the same group of people who were involved in the news at Stockholm University. And Elin Lindsäter is part of it (see picture). The changes are in line with the ideology of the Oslo Chronic Fatigue Consortium and are certainly part of their advocacy work to change the perception of ME (and what they call "chronic fatigue syndrome") and to ensure that their treatment model is used. [...]"
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