Sweden: Socialstyrelsen and SBU to produce new evidence reviews for post covid

mango

mango

Senior Member (Voting Rights)
In August 2024 the National Board of Health and Welfare in Sweden (Socialstyrelsen), published national guidelines for post covid, post influenza, post sepsis, post intensive care syndrome, ME/CFS and PANS/PANDAS. The guidelines are really unhelpful and has been heavily criticised, most of all by the Swedish Covid Association but also by some doctors and other healthcare professionals.

Here is the forum thread on the August 2024 guidelines:

https://www.s4me.info/threads/swede...ditions-and-syndromes-including-me-cfs.39771/

Today the Swedish government announced two new projects related to the current guidelines:

The National Board of Health and Welfare (Socialstyrelsen) and the Swedish Agency for Health Technology Assessment and Assessment of Social Services (SBU) are being assigned "to produce knowledge reviews on post-covid" and "to map and analyse the treatment of children with post-covid".

Here is the government's pressrelease:

Ökad kunskap om postcovid och bättre behandling av barn
https://www.regeringen.se/pressmedd...p-om-postcovid-och-battre-behandling-av-barn/
Auto-translate said:
Increased knowledge about post-covid and better treatment of children

Published 04 February 2025

The Government wants to see increased knowledge about post-covid and a mapping of the treatment of children in order to improve care. The National Board of Health and Welfare and the National Institute for Health and Welfare are therefore given new assignments.

- ‘We need a deeper understanding of how post-covid affects children and how we can best provide treatment. There is currently a lack of knowledge about post-covid, while research in the field is increasing. There is therefore every reason to give these assignments now to ensure that care is based on the latest and most reliable knowledge,’ says Minister for Health Acko Ankarberg Johansson.

The National Board of Health and Welfare will be tasked with mapping and analysing the treatment of children with post-covid. The assignment includes a review of the care received by children with post-covid during the years 2021-2024, with the aim of increasing knowledge about the care and its results. The National Board of Health and Welfare will also engage in dialogue with clinical experts in the field and report its findings by 30 January 2026.

The Swedish Agency for Health Technology Assessment and Assessment of Social Services (SBU) will be tasked with producing knowledge reviews on post-covid. SBU will summarise the current state of knowledge and identify any gaps in knowledge. The National Board of Health and Welfare is also tasked with disseminating the knowledge produced to healthcare professionals and other relevant stakeholders.

The assignment also includes an international perspective where the National Board of Health and Welfare will consult with professional associations, patient and family organisations, academic institutions and international bodies such as the WHO.

The assignment is to be completed by 30 May 2026, with SBU and the National Board of Health and Welfare each submitting a final report.
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Uppdrag att ta fram kunskapsöversikter om postcovid
https://www.regeringen.se/regerings...-att-ta-fram-kunskapsoversikter-om-postcovid/
Auto-translate said:
Assignment to produce knowledge reviews on postcovid

Case number: S2023/01432

Published 04 February 2025

The Government commissions the Swedish Agency for Health Technology Assessment and Assessment of Social Services, SBU, to produce knowledge reviews on postcovid. The Government also instructs the National Board of Health and Welfare to disseminate the knowledge.

Download: Assignment to produce knowledge reviews on postcovid (pdf 1 MB)

SBU shall, among other things:
  • summarise the current state of knowledge and identify any gaps in knowledge regarding postcovid.
The National Board of Health and Welfare will, among other things
  • propose measures to promote further work in the field and disseminate the knowledge produced to healthcare professionals and other relevant stakeholders in an appropriate manner.
  • take an international perspective,
  • consult with relevant stakeholders such as professional associations and patient, user and family organisations
  • liaise with relevant academic institutions and international bodies such as the WHO.
The SBU must submit an interim report by 30 May 2025 and a final report by 30 May 2026. SBU and the National Board of Health and Welfare will each submit a final report.
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Uppdrag till Socialstyrelsen att kartlägga och analysera behandlingen av barn med post-covid
https://www.regeringen.se/regerings...nalysera-behandlingen-av-barn-med-post-covid/
Auto-translate said:
Assignment to the National Board of Health and Welfare to map and analyse the treatment of children with post-covid

Case number: S2025/00163

Published 04 February 2025

The Government instructs the National Board of Health and Welfare to map and analyse the care that children with post-covid have received during the years 2021-2024.

Download: Assignment to the National Board of Health and Welfare to map and analyse the treatment of children with post-covid (pdf 417 kB)

Among other things, the National Board of Health and Welfare shall
  • describe the scope of care and, to the extent possible, the outcome of care,
  • discuss with clinical experts in the field,
  • submit a final report to the Government Offices of Sweden by 30 January 2026.
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Press release by the Swedish Covid Association:

Regeringen ger Socialstyrelsen bakläxa
https://covidforeningen.se/regeringen-ger-socialstyrelsen-baklaxa/
Auto-translate said:
Government gives the National Board of Health and Welfare an order to redo

The National Board of Health and Welfare has gotten an order to redo, from the government which now wants more knowledge about post-covid in order to improve care for those affected. Both the National Board of Health and Welfare and the Swedish Agency for Medical and Social Research (SBU) are therefore given new assignments.

- ‘This can only be seen as an order to redo. The authorities have not done the job that the many severely ill in post-covid deserve, says Anja L Sundberg, vice chairman of the Swedish Covid Association.

Less than six months have passed since the National Board of Health and Welfare presented its updated knowledge support on post-covid. Since then, the knowledge support has been heavily criticised by the Swedish Covid Association, doctors and other healthcare professionals in the field. And now the government is giving new assignments to the National Board of Health and Welfare and SBU.

The National Board of Health and Welfare will map and analyse the treatment of children with post-covid, which means a review of the care that children with post-covid have received during the years 2021-2024. The National Board of Health and Welfare will also conduct a dialogue with clinical experts in the field.

- We need a deeper understanding of how post-covid affects children and how we can best provide treatment. The current state of knowledge about postcovid is inadequate, while research in the field is increasing. Therefore, there is every reason to give these assignments now to ensure that care is based on the latest and most reliable knowledge,’ says Minister for Health Acko Ankarberg Johansson in a press release.

SBU will be tasked with producing knowledge reviews on post-covid, i.e. summarising the current state of knowledge. The National Board of Health and Welfare will also be tasked with disseminating the knowledge produced to healthcare professionals and other relevant stakeholders. The assignment also includes an international outlook where the National Board of Health and Welfare will consult with professional associations, patient and family organisations, academic institutions and international bodies such as the WHO.

- We have repeatedly emphasised the importance of collaboration with patient associations and experts to produce high-quality knowledge support that can provide concrete guidelines for healthcare. We are pleased that the government has listened and is now taking action,’ says Lisa Norén, spokesperson for the Swedish Covid Association.

SBU must submit an interim report by 30 May 2025 and both SBU and the National Board of Health and Welfare must submit their final reports by 30 May 2026.
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The Swedish Covid Association has shared the news on their Facebook page too.

(Edited to change the translation of the word "bakläxa" from "a reprimand" to "an order to redo". Please let me know if you have a better suggestion.)
 
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@MittEremltage shares her thoughts on the new projects on her blog today:

Bakläxa eller belöning?
https://mitteremitage.wordpress.com/2025/02/05/baklaxa-eller-beloning/
Auto-translate said:
An order to redo or a reward?

Are the new assignments to the National Board of Health and Welfare and SBU on postcovid an order to redo or a reward?

It has not even been six months since the failure of SBU and the National Board of Health and Welfare regarding the national knowledge support for post-infectious diseases. Yet both the National Board of Health and Welfare and the SBU have now been given new government assignments regarding postcovid. In a press release, the Swedish Covid Association calls the new government assignments ‘an order to redo’. [...]

But excuse me.

The National Board of Health and Welfare and SBU will receive a total of SEK 6.5 million for new assignments. Nothing is mentioned about the shortcomings in the knowledge support from autumn 2024, and the government says nothing about the fact that the authorities did not even do everything they asked for last time.

How the hell can that be an order to redo?

From my point of view, it looks rather like a reward. The government leaves the shortcomings uncommented and the authorities get new confidence and capital to continue their work. In addition, they give the National Board of Health and Welfare the task of ‘disseminating knowledge’ after the survey has been completed.

I'm getting a stomach ache.

How do we know that it won't be the same ideologically driven gang that gets the assignment again? That this mission will not only reinforce the problems that arose last time? And what happened to the rest of the diagnoses covered by the disastrous knowledge support from last autumn? Why are we being treated differently now? Are you going to pretend that we don't exist again? That post-covid is something new and different?

Don't we deserve better from the authorities?

I may have missed something essential here. However, the documents only mention postcovid and explicitly state that only postcovid is covered by the assignments. It is mentioned that the state of knowledge is inadequate for all the diagnoses that were included last time, but they note that research is progressing in the case of postcovid. And that it is therefore relevant with a new assignment.

But the SBU ignored all basic research on all diagnoses last time, including the phenomena that characterise some of them (such as exertion-induced exacerbation of symptoms, PEM).

Thus, the design of the assignment automatically skips research that could provide direction on what treatment and support people with PEM, for example, need. And what is harmful. Things that can actually be vital for the healthcare system to know before pushing people into the wrong rehabilitation measures.

Research that is actually relevant even for people with post-covid.

I am sorry to have to say this. But I unfortunately don't see anything in the new assignments that ensures that things won't go to hell again. Because I don't even see that acknowledgement that things went to hell last time.

And that makes me very worried.
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Yikes. Yup. This is even worse than industries facing penalties that are a tiny fraction of the gains they can make by ignoring regulations. They're getting rewarded for having failed. So they can fail the same way again. For which they will also be rewarded, by having their mediocre work elevated.

I've rarely seen systems so gung-ho on rewarding failure. Even in business and politics there are limits to how bad things can get, as you end up losing elections or go bankrupt, or just lose your job. But health care isn't subjected to this pressure. When it fails, the worst that can happen, it seems, is that you may not get money to fail again. But you may also get money to fail again. So there's really not much incentive to bother making an effort.

Their system. For their purposes. Their agendas. Their careers. To keep working age people employed and not much else. The rest is mostly for show. Hard to imagine a worst way of doing things. There are easily millions of ways that are just as bad. But, worse? Very hard.
 
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