Petition: 2025 Sweden ”Withdraw national guidelines for post-infectious conditions now!”

The ME Inquiry Report

The ME Inquiry Report

Senior Member (Voting Rights)
Please help us stop guidelines that ignore risks and recommend GET (among other things)!

Translation of petition:

In April 2023, the government commissioned the Swedish Agency for Health Technology Assessment and Assessment of Social Services (SBU) and the National Board of Health and Welfare (Socialstyrelsen) to develop national knowledge support for post-COVID and other post-infectious conditions (in this case ME, PANS/PANDAS, long-term problems after sepsis and influenza, and POTS). The assignment was reported in August 2024 and was followed by massive criticism from researchers, professionals, and patients. In short, the authorities have deviated from the government's assignment, their own guidelines, and science. The result? National guidelines with serious patient safety risks. In the worst case, with fatal consequences. Despite this, Socialstyrelsen has decided that no changes will be made.

We demand that the national guidelines be withdrawn with immediate effect and that the National Audit Office review the authorities' work.

Why is this important?

Sweden has adopted a national action plan for patient safety. It states that "no patient should suffer harm as a result of healthcare." This zero tolerance policy must, of course, also apply to people with post-infectious conditions.

This patient group basically lacks access to adequate specialist care, and ignorance and prejudice characterize the care that patients receive in primary care. In line with knowledge management, the guidelines will influence the direction of the development of any new care and be used to educate healthcare personnel about these diagnoses. Such training is currently underway for primary care in the Stockholm region.

The National Board of Health and Welfare's guidelines risks causing great harm as long as it is allowed to remain unchanged, so the situation is urgent.

Let's work together to put a stop to this!
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Additional information (autotranslated):
Socialstyrelsens kunskapsstöd

Sign petition here: Dra tillbaka kunskapsstödet för postinfektiösa tillstånd nu!
 
And the perfect streak of betrayal continues. A 100% streak going back all the way to the beginning. Amazing. No other job where, as a professional, you can simply copy-paste a total failure and get away with it when you were explicitly tasked with "this is a failure, we need better outcomes". None. Straight up not a single one. As a non-professional, like as an executive, sure, happens all the time. As a professional? Good grief not even a chance.

But it's hard to see where to take things from there, when the systems keep making it clear that absolutely refuse to do anything to help. What then? Rules don't matter at all, only enforcement, and the people who fail to enforce those rules are the ones who fail them. They can have silly little fake rules that state that "no patient should suffer harm as a result of healthcare" but it means nothing at all, just ego-stroking and virtue signaling.

Signed.
 
In April 2023, the government commissioned SBU and the National Board of Health and Welfare to develop a national knowledge support for post-covid and other post-infectious conditions (in this case ME, PANS/PANDAS, long-term symptoms after sepsis and influenza, and POTS). The assignment was reported in August 2024 and was followed by massive criticism from researchers, professionals and patients. In short, the authorities have deviated from the government mandate, their own guidelines and science. Result? A knowledge support with serious patient safety risks. In the worst case, with a fatal outcome. Despite this, the National Board of Health and Welfare has stated that it will not make any changes.

We demand that the knowledge support be withdrawn with immediate effect and that the Swedish National Audit Office audits the work of the agencies.

Why is it important?​

Sweden has adopted a national action plan for patient safety. It states that "no patient should have to suffer a healthcare injury". Of course, this zero vision must also include people with post-infectious conditions.

In principle, the patient group lacks access to adequate specialist care, and ignorance and prejudice characterize the care that patients are exposed to in primary care. A knowledge support will, in line with knowledge management, affect the direction of the construction of any new care and be used to educate healthcare professionals about these diagnoses. Such training is currently underway for Region Stockholm's primary care.

The National Board of Health and Welfare's knowledge support risks doing great damage as long as it is allowed to remain in unchanged condition, so the situation is acute.

Now we are helping each other to put a stop to this!

Depression:
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(I was given the option to translate into english by browser).

eta: havent check this but not sure what has been translated as 'depression'?
 
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