Sweden: Socialstyrelsen's new national guidelines for "Postcovid and other related conditions and syndromes" including ME/CFS

Socialstyrelsen underkänner WHO:s kunskapsunderlag om postcovid
https://fof.se/artikel/socialstyrelsen-underkanner-whos-kunskapsunderlag-om-postcovid/
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National Board of Health and Welfare rejects WHO evidence base on post-covid

Despite widespread criticism, the National Board of Health and Welfare will not update its knowledge base on post-infectious conditions.

‘Perhaps the most serious thing is that they do not recognise the WHO's red flags,’ infectious disease physician and researcher Judith Bruchfeld told F&F.

The National Board of Health and Welfare's knowledge support on post-infectious conditions was presented in August this year and was heavily criticised by doctors, researchers and patient associations - who felt it did not take sufficient account of new knowledge in the field.

The knowledge support was commissioned by the government and aims to help primary care physicians choose the right interventions when complications arise after infections. It covers the diagnoses post-covid, post-influenza, post-sepsis, post-intensive care syndrome, ME/chronic fatigue syndrome and PANS/Pandas (neuropsychiatric disorders).
Evidence is lacking according to the National Board of Health and Welfare

In the support, the National Board of Health and Welfare writes that there is no ‘evidence-based way’ to treat and rehabilitate the patient group. The advice given is mostly about relieving symptoms.

Judith Bruchfeld, a researcher at Karolinska Institutet and a specialist in infectious diseases at Karolinska University Hospital in Solna, agrees that there is a lack of good treatment studies in the field.

- ‘But that's not surprising, as the underlying mechanisms behind the diseases are still being discussed,’ she says.

However, Bruchfeld believes that there are plenty of well-designed studies based on clinical experience.

These include observational studies examining subgroups of post-COVID patients, or studies describing how the sequelae of COVID-19 can be diagnosed, alleviated and rehabilitated.

Red flag for physical exercise

The National Board of Health and Welfare's advice that patients with post-infectious symptoms can be offered rehabilitation in the form of gradually increasing physical activity was particularly harshly criticised.

This is despite the fact that, for example, the WHO in its clinical guidelines for COVID-19 shows red flags to warn doctors against recommending physical exercise for conditions such as exercise-induced low oxygenation or exercise-induced heart problems. The latter include POTS syndrome, which causes a sharp increase in heart rate when sitting or standing up.

The National Board of Health and Welfare's advice may therefore pose patient safety risks in some cases, according to critics.

- This is serious because, according to the WHO, doctors must rule out the possibility that the patient has suffered dangerous complications from COVID-19 before giving advice on physical exercise,’ Judith Bruchfeld told F&F.

Lisa Norén, a doctor and spokesperson for the Swedish Covid Association, also calls for more information in the knowledge support.

- ‘The National Board of Health and Welfare should include the WHO's red and also the yellow warnings,’ says Lisa Norén.

‘The red flag means a strong recommendation and the yellow a limited recommendation.

Judith Bruchfeld also calls for knowledge about how POTS can be diagnosed, and for doctors to be recommended to investigate respiratory problems such as dyspnoea before starting rehabilitation. This is because breathing problems may be due to chronic pulmonary embolisation or hypoxia due to impaired gas exchange in the lungs, she says.
National Board of Health and Welfare: no need for revision

In early November, Judith Bruchfeld and Lisa Norén, among others, met with representatives of the National Board of Health and Welfare to discuss the support. The agency's director general, cardiologist Björn Eriksson, also attended. At the meeting, they were told that there will be no revision of the knowledge support at present. Something that Sofia von Malortie, head of unit at the National Board of Health and Welfare, confirmed to Forskning & Framsteg.

During the meeting, the Swedish Covid Association criticised the fact that the National Board of Health and Welfare does not rely on international bodies such as the WHO or the US National Institute for Health and Care Excellence (NICE).

- The National Board of Health and Welfare's representatives stated that their ambition was to look at international sources of knowledge, but that they could not assess the WHO's evidence base, for example,’ says Lisa Norén.

National Board of Health and Welfare rejects WHO warnings

According to the Swedish Patient Act, healthcare professionals must carry out their work in accordance with both science and proven experience. Sofia von Malortie at the National Board of Health and Welfare says that the agency used the GRADE evidence grading scale to determine whether there is scientific support for recommending different medical interventions.

However, as the WHO's red warning flags are based on experts' proven experience, and as the WHO has not used GRADE, the National Board of Health and Welfare considers that the assessments have a weak evidence base.

‘We chose not to make recommendations based on such a basis, but instead to provide guidance by encouraging the recipient to make their own assessments and follow up their efforts,’ writes Sofia von Malortie in an email to Research & Progress.

In practice, this means that the National Board of Health and Welfare rejects the WHO's red flags. This is despite the fact that the WHO clearly states its evidence base in its guidelines under the heading ‘Justifications’ and provides a number of scientific references.

- Unless the evidence base is updated, it may be difficult for primary care doctors to diagnose serious complications and decide on the best course of action, including the need for referrals to secondary and tertiary care, says Judith Bruchfeld.
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I follow politics a lot. Especially the rise of disinformation, propaganda, and so on. It's common in some political circles to make all sorts of wild claims about this and that in public, but in formal settings, in court, in depositions, in inquiries and so on, under oath, they all admit that it's all BS. Sometimes it creates problems, but usually it barely matters because reality matters less and less. They'll keep spewing the lies in public, and if in a private formal setting they are asked again, they will again show temporary contrition about their lies.

But in health care, you just don't even see that minimal experience of shame and temporary contrition. They just stick to the lies, knowing that they are expected to lie and that the only way for there to be consequences for them would be to not lie, to admit the truth.
In the support, the National Board of Health and Welfare writes that there is no ‘evidence-based way’ to treat and rehabilitate the patient group. The advice given is mostly about relieving symptoms.

Judith Bruchfeld, a researcher at Karolinska Institutet and a specialist in infectious diseases at Karolinska University Hospital in Solna, agrees that there is a lack of good treatment studies in the field.

- ‘But that's not surprising, as the underlying mechanisms behind the diseases are still being discussed,’ she says.

However, Bruchfeld believes that there are plenty of well-designed studies based on clinical experience.

These include observational studies examining subgroups of post-COVID patients, or studies describing how the sequelae of COVID-19 can be diagnosed, alleviated and rehabilitated.
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Of course they know that this "no 'evidence-based way'" is the current standard, on the blatant lie that it is evidence-based. And that the lack of evidence is irrelevant, because they'll both admit that there is evidence or no evidence, sometimes in adjacent sentences, depending on what seems a more effective excuse, since facts simply don't matter.
The National Board of Health and Welfare's advice that patients with post-infectious symptoms can be offered rehabilitation in the form of gradually increasing physical activity was particularly harshly criticised.

This is despite the fact that, for example, the WHO in its clinical guidelines for COVID-19 shows red flags to warn doctors against recommending physical exercise for conditions such as exercise-induced low oxygenation or exercise-induced heart problems. The latter include POTS syndrome, which causes a sharp increase in heart rate when sitting or standing up.
Click to expand...
There is no evidence. But also there is evidence. Any evidence that contradicts the lack of positive evidence is simply ignored. They simply don't even bother pretending to adhere to reality, to facts or even basic standards of decency. They straight up just lie all the way. Then lie about the lies. And never actually display even a tiny bit of shame or hesitation at doing so. They'll lie on the stand, and in documents, and in depositions, and nothing matters. Worse than political operatives who literally lie for a living.

It's stuff like this that makes the likely rule of RFK Jr over American health care seem like barely a slight deviation from a current standard of complete dumpster fires. Sweden technically has none of those problems, this is purely decided by technocrats. And yet the outcomes they produce are just as incompetent and malicious, just as detached from reality as a possible, likely, shift at the NIH away from researching infectious diseases, or stuff like raw milk, or 5G causing autism, or whatever. The only difference is really between being ineptly failed, or maliciously-ineptly failed. You get failed either way, and reality doesn't factor in one bit either way.
 
rvallee said:
I follow politics a lot. Especially the rise of disinformation, propaganda, and so on. It's common in some political circles to make all sorts of wild claims about this and that in public, but in formal settings, in court, in depositions, in inquiries and so on, under oath, they all admit that it's all BS. Sometimes it creates problems, but usually it barely matters because reality matters less and less. They'll keep spewing the lies in public, and if in a private formal setting they are asked again, they will again show temporary contrition about their lies.

But in health care, you just don't even see that minimal experience of shame and temporary contrition. They just stick to the lies, knowing that they are expected to lie and that the only way for there to be consequences for them would be to not lie, to admit the truth.

Of course they know that this "no 'evidence-based way'" is the current standard, on the blatant lie that it is evidence-based. And that the lack of evidence is irrelevant, because they'll both admit that there is evidence or no evidence, sometimes in adjacent sentences, depending on what seems a more effective excuse, since facts simply don't matter.

There is no evidence. But also there is evidence. Any evidence that contradicts the lack of positive evidence is simply ignored. They simply don't even bother pretending to adhere to reality, to facts or even basic standards of decency. They straight up just lie all the way. Then lie about the lies. And never actually display even a tiny bit of shame or hesitation at doing so. They'll lie on the stand, and in documents, and in depositions, and nothing matters. Worse than political operatives who literally lie for a living.

It's stuff like this that makes the likely rule of RFK Jr over American health care seem like barely a slight deviation from a current standard of complete dumpster fires. Sweden technically has none of those problems, this is purely decided by technocrats. And yet the outcomes they produce are just as incompetent and malicious, just as detached from reality as a possible, likely, shift at the NIH away from researching infectious diseases, or stuff like raw milk, or 5G causing autism, or whatever. The only difference is really between being ineptly failed, or maliciously-ineptly failed. You get failed either way, and reality doesn't factor in one bit either way.
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I’m not sure whether you are correct about Sweden being about technocrats/none of those issues from what I’ve read on the political situation there?
 
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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".

Forum thread here:
https://www.s4me.info/threads/swede...ce-new-evidence-reviews-for-post-covid.42487/
 
Region Stockholm has published the program for a training series of 15 lectures for health care staff in primary care on post-infectious conditions. The information shows that the program will be based on the National Board of Health and Welfare's national guidelines and, like this, will focus on isolated symptoms rather than diagnosis. ME and PEM do not appear in the program.

"To strengthen the clinical work with post-infectious conditions, the Academic Primary Care Center offers two digital lecture series for doctors and rehabilitation staff in Region Stockholm's primary care this fall. Other professional groups in primary care are also welcome to participate. Based on the National Board of Health and Welfare's guidelines on postcovid and related conditions and syndromes, a total of 15 webinars will be given, focusing on symptoms, collaboration and an interprofessional approach."
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Among the lecturers are a number of people who the National Board of Health and Welfare and SBU used as experts when working on the much criticized national guidelines.

Link (autotranslated): Two training series on post-infectious conditions


I have collected my thoughts about this in a blogpost:
”Conclusion : The Stockholm Region's planned training package for primary care is a slap in the face to the entire patient community, as well as the healthcare staff who have the most experience with the patient group and biomedical researchers with experience of the diagnoses. All of these, with a lot of facts, knowledge and experience on their feet, have criticized the National Board of Health and Welfare's national knowledge support both in terms of work process and its unscientific and patient-dangerous content.”
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Link (autotranslated): Stockholm Region's training package, a major betrayal of patients
 
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