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

[rvallee]

I can't see that this has been shared. It is Swedish Agency for Health Technology Assessment and Assessment of Social Services (Statens beredning för medicinsk och social utvärdering, SBU) that have compiled the scientific basis on which the National Board of Health and Welfare bases its report.

”SBU has mapped what research is available on the effects of treatments and rehabilitation efforts in post-covid and other related conditions and syndromes: ME/CFS chronic fatigue syndrome, Pediatric Acute-onset Neuropsychiatric Syndrome (PANS/PANDAS), long-term problems after sepsis and influenza and in the condition Postural orthostatic tachycardia syndrome (POTS). The report describes the systematic reviews and primary studies that have been included.”

Via Google translate:
https://www-sbu-se.translate.goog/s...l=auto&_x_tr_tl=en&_x_tr_hl=sv&_x_tr_pto=wapp

They only looked at clinical trials and systematic reviews of clinical trials. Somehow labeled as randomized controlled trials even though almost none of them are. It's basically, what, the tier 2 Rituximab trial and maybe a handful about supplements? All the others are open label randomized trials with subjective outcomes. So that would be most of the biopsychosocial evidence base:

Overall, the state of knowledge is deficient for all the conditions investigated

Correct. It's so annoying how we can't do some of this basic academic work because if someone collected all those quotes from authoritative sources it would add up to a very damning picture. On the eminence game, the quacks have lost. Authoritative bodies have basically declared it all irrelevant.

But instead we live in the alternative reality where despite this, this deficient state of knowledge rules every damn thing about it and continues to suck up most of the public funding.

This also is very significant given that this basically describes all systematic reviews, including the awful Cochrane exercise review:

The included studies were very different and therefore we judged that it was not meaningful to make comparisons of reported efficacy results, or to assess the reliability of those results

Although this is a bit odd, since if anything they are almost identical, but they have zero consistency with one another and any interpretation is down to preferences and biases. They all follow the same patterns, aims, but with the same general lack of coherence that makes them impossible to reliably compare. It's the very nature of pragmatic trials that is at fault. They are largely uninterpretable by nature.

Similar to what the NIH, IOM/NAM, CDC, NICE, IQWIG and others found, it's all garbage, not even worth looking at:

For the conditions ME/CFS, only two articles were included in addition to what was included in SBU's previous evaluation of the state of knowledge from 2019.

It's too long for me to read through but it looks technically sound. And devastating to the dominant biopsychosocial model whose proponents somehow pretend like they're the underdogs who were never given a chance. Not that I expect it will persuade anyone from continuing to fund studies that will inevitably be marked down as deficient despite being used to justify more failure. So far most LC studies have all the same flaws and biases.

 

[Sean]

The included studies were very different and therefore we judged that it was not meaningful to make comparisons of reported efficacy results, or to assess the reliability of those results

WTF? Especially the reliability issue. That is the whole damn problem: not using sufficiently robust methodology to produce reliable useful safe results.

So, anything goes now?

 

[mango]

Socialstyrelsen: Så bör vården hjälpa postcovid-patienter
https://lakartidningen.se/aktuellt/...sen-sa-bor-varden-hjalpa-postcovid-patienter/

National Board of Health and Welfare: How healthcare should help post-covid patients

Knowledge about post-covid and related conditions is still lacking, but patients should be offered assessment, treatment and rehabilitation for their symptoms. This is according to the National Board of Health and Welfare, which has developed a new knowledge support for healthcare providers.

- The symptoms of these patients are already well known within the healthcare system and for many of the symptoms there is often good symptom relief to offer the patients,’ says Thomas Lindén, Head of Department at the National Board of Health and Welfare in a press release.

The National Board of Health and Welfare's knowledge support is intended to support the assessment and selection of appropriate interventions for symptoms of post-covid and other related conditions. Typical symptoms include headaches, loss of smell and taste, dizziness, fatigue and difficulty sleeping. The knowledge support is primarily aimed at those working in primary care, but also in specialised care.

- Healthcare professionals need to make an individual assessment that also takes into account the patient's previous medical history. It is often a puzzle that needs to be put together,’ says Thomas Lindén in the press release.

The Swedish National Board for Medical and Social Research (SBU) has also mapped the current research on interventions for post-covid and other similar conditions. In their summary, they conclude that there is still a lack of sufficient knowledge about the underlying causes, the condition and evidence-based treatment. The National Board of Health and Welfare believes that more research is needed.

- ‘We will monitor developments and continuously review and, if necessary, update the knowledge support for the healthcare sector,’ says Thomas Lindén.

 

[mango]

Skrivelse till Socialstyrelsen angående nytt kunskapsstöd – brister i beredningsprocessen
https://covidforeningen.se/skrivelse-till-socialstyrelsen-angaende-nytt-kunskapsstod/

Today, the Swedish Covid Association has sent a letter to the National Board of Health and Welfare with comments on the updated knowledge support for post-covid and other post-infectious conditions. We draw attention to several shortcomings in the preparation process, which have had a negative impact on the quality of the knowledge support with patient safety risks as a result. Download the letter with references or read the text without references here on the website.

Google Translate, English

ETA: Excellent letter! Definitely worth reading in its entirety I was very pleasantly surprised by many things, most of all that they have actually included ME fully which is new as far as I know. I especially appreciate that they highlight PEM, stress the need for home visits for the severely ill, and don't shy away from talking about stigma or the psychosomatic model. Thank you, Covidföreningen, really well done!

 

[Clementine]

Skrivelse till Socialstyrelsen angående nytt kunskapsstöd – brister i beredningsprocessen
https://covidforeningen.se/skrivelse-till-socialstyrelsen-angaende-nytt-kunskapsstod/

Google Translate, English

ETA: Excellent letter! Definitely worth reading in its entirety I was very pleasantly surprised by many things, most of all that they have actually included ME fully which is new as far as I know. I especially appreciate that they highlight PEM, stress the need for home visits for the severely ill, and don't shy away from talking about stigma or the psychosomatic model. Thank you, Covidföreningen, really well done!

They are also being direct about how problematic the process has been. They bring up several weird choices (chosing experts etc.) and it's really nice to see this clear and fearless approach.

 

[Eleanor]

Skrivelse till Socialstyrelsen angående nytt kunskapsstöd – brister i beredningsprocessen
https://covidforeningen.se/skrivelse-till-socialstyrelsen-angaende-nytt-kunskapsstod/

Google Translate, English

ETA: Excellent letter! Definitely worth reading in its entirety I was very pleasantly surprised by many things, most of all that they have actually included ME fully which is new as far as I know. I especially appreciate that they highlight PEM, stress the need for home visits for the severely ill, and don't shy away from talking about stigma or the psychosomatic model. Thank you, Covidföreningen, really well done!

I'm not able to read it all at the moment but this part stood out to my skimming eye - I think it's a really important point.

There are not that many completed drug studies yet. Before you start big ones, you have to have an idea of the underlying mechanisms, and then they take time to implement. Many of the treatment studies that have been carried out therefore deal with non-pharmacological methods, for example various forms of therapy. SBU and the National Board of Health and Welfare also state themselves that the approach means that the research studies included in the report do not necessarily reflect the most important problems and symptoms. SBU highlights as an example that they have identified a number of studies on the treatment of loss of smell in post-covid, even though it is not one of the most serious symptoms. In the latest survey that SBU carried out, for example, studies on aromatherapy were also listed. No researcher or clinician worth the name believes it will cure postcovid. But the simple fact that such studies can be started immediately – regardless of the fact that the underlying mechanisms have not yet been mapped – means that such studies can also be published more quickly than pharmaceutical interventions. In this way, the very timing of the publication of a compilation of knowledge with the demarcation now made also risks contributing to a distorted view of the diagnoses, which leads to the psychosomatic view of the diseases being reinforced and to the fact that patients cannot be offered good and patient-safe care based on the best available knowledge.

 

[CorAnd]

Skrivelse till Socialstyrelsen angående nytt kunskapsstöd – brister i beredningsprocessen
https://covidforeningen.se/skrivelse-till-socialstyrelsen-angaende-nytt-kunskapsstod/

Google Translate, English

They did an amazing job! I really can’t praise them enough.

 

[mango]

Läkaren Anna drabbad av postcovid: ”Jag har fått strida för hjälpen jag fått”
https://www.dn.se/sverige/lakaren-a...vid-jag-har-fatt-strida-for-hjalpen-jag-fatt/

Anna, a doctor affected by post-covid: ‘I had to fight for the help I received’

Anna Voltaire had prolonged fever, chronic migraines and memory problems due to post-covid. Now she is working full-time and exercising again.

- ‘I've had to fight for the help I've received,’ she says.

A new report from the National Board of Health and Welfare shows how healthcare providers should help patients with post-covid.

[...] Over the past year, Anna Voltaire has gradually returned to work. She now works full-time, but it doesn't work, she says.

- ‘I come home and sleep all night, miss dinner and my children. I love working, but it comes at a high price.

What has helped her most is the support she has received from rehabilitation services, such as occupational therapists and speech therapists. For example, she has learnt to manage her energy in different ways throughout the day. Like taking regular breaks.

- ‘I work for 45 minutes and then I take a 15-minute break.

[...] The traces that the covid virus has left in her body, such as damage to the tissue in her lungs, have not been helped.

- ‘I have had to fight to be examined, not least to rule out certain conditions. The worst thing has probably been that after a while, healthcare staff think it's ‘something else’ when you don't get well.

[...] The SBU has examined so-called randomised studies with control groups. It is still unclear exactly how these long-term problems arise, but there is some evidence of symptom relief, especially in post-covid, for example:

- Physical exercise, such as aerobic exercise, strength training, pool training.

- breathing training, including vocal training

- various forms of rehabilitation and lifestyle changes

- Psychological treatment, such as cognitive behavioural therapy.

One of the people who compiled the SBU's scientific summary is Per Åkesson, a doctor specialising in infectious diseases at Skåne University Hospital in Lund. Over the past three years, he has seen around 300 patients with post-covid. He had expected more from research after four years of COVID-19.

- ‘But it's difficult to do research in this area. The patient groups look so different over time. They have been infected by different virus variants, and in the beginning there were no tests, which means that many lack a confirmed diagnosis of COVID-19. Not everyone has been vaccinated either.

Per Åkesson says that despite having met so many patients, it is difficult to understand the disease and help in the best way.

- ‘In my experience, the vast majority of people recover by themselves, but it takes time. You need a safe healing environment. It is important to be accompanied by committed healthcare staff, as well as to avoid stress and anxiety about the work situation and finances, for example.

Thomas Lindén at the National Board of Health and Welfare perceives disappointment among some patients that the report lacks recommendations on new treatment options.

- ‘Some people want us to lower the threshold for the evidence requirements we set for issuing recommendations. But unfortunately we cannot do that.

 

[rvallee]

The SBU has examined so-called randomised studies with control groups. It is still unclear exactly how these long-term problems arise, but there is some evidence of symptom relief, especially in post-covid, for example:

- Physical exercise, such as aerobic exercise, strength training, pool training.

- breathing training, including vocal training

- various forms of rehabilitation and lifestyle changes

- Psychological treatment, such as cognitive behavioural therapy.

That's not what the report said, though. Those are the treatments it found in the literature, but it found that none of them show any efficacy and that the evidence base is deficient and so chaotically heterogeneous that even making comparisons is difficult. And all the claims from biased studies can be explained by this:

‘In my experience, the vast majority of people recover by themselves, but it takes time. You need a safe healing environment. It is important to be accompanied by committed healthcare staff, as well as to avoid stress and anxiety about the work situation and finances, for example.

Except for the "important to be accompanied by committed healthcare staff" part. There is no basis to this, the only thing they can really do is sign people off from work. For anything else they mostly admit that there is nothing they can do, so what would any "accompaniment" even matter here? This is convalescence. Not rehabilitation. But they only want to do the rehabilitation, because it feels like doing something, even if it leads to worse outcomes they prefer that.

Over the past three years, he has seen around 300 patients with post-covid. He had expected more from research after four years of COVID-19.

Given the state of the research so far, this expectation is badly misplaced. You have to put in a competent effort if you want results. No one seems capable of putting in a competent effort outside of a small group of privately funded researchers with personal stakes in the outcomes, who simply don't have the resources to get far.

So this is mostly disinformation. It presents a report that said there is no evidence for rehabilitation as if it says the opposite. Ridiculous.

 

[mango]

what would any "accompaniment" even matter here?

It's a bad auto-translation. Literally "be followed by", I think it was probably intended to be in the sense having check-ins and follow-ups etc over time? (Sorry, bad PEM, can't find the right words at the moment.)

 

[rvallee]

It's a bad auto-translation. Literally "be followed by", I think it was probably intended to be in the sense having check-ins and follow-ups etc over time? (Sorry, bad PEM, can't find the right words at the moment.)

That's how I understood it. I don't see how it matters to be followed by someone when they don't know what to do, know less than the patients themselves, when nothing they do hooks back to research and no one makes any of use of that data.

It's self-management until then. The rest of the support needed is financial/economic, nothing health care professionals can do about any of it. They write that it's important. It isn't. To have the option to call someone is important, in case of unrelated problems, but for the most part they don't contribute anything. It just seems put there to give themselves some role, to take credit for natural recoveries.

For sure if it was competent and knowledgeable it would be important, but they're still glued to the starting line and unable to budge from there.

 

[mango]

A news item on Swedish radio this morning (2 minutes):

Kritiken: Nya riktlinjer för postcovid kan leda till patientskador
https://sverigesradio.se/artikel/co...ar-socialstyrelsens-riktlinjer-for-behandling

Criticism: New post-covid guidelines could lead to patient harm
2:08 min

The National Board of Health and Welfare's new report on how doctors should treat patients with post-covid has been sharply criticised by the Swedish Covid Association, among other things for encouraging patients to exercise.

The World Health Organisation (WHO), among others, believes that certain conditions that can affect post-covid patients risk being exacerbated by physical activity.

The National Board of Health and Welfare says that there is still not enough research to advise these patient groups against exercise.

Dr Lisa Norén says there are two problems: there is not enough clarity about the different conditions, and sometimes what is written is completely wrong (for example recommending gradually increased activity, because it can cause iatrogenic harm).

Thomas Lindén, Socialstyrelsen, says that there is not enough evidence to defend recommending patients with certain conditions to refrain from* exercising. Regarding describing the illness in more detail, he replies that it's a matter of time (meaning future research will give us more knowledge).

* The word used was "avstå". I'm not sure how best to translate it. Abstain from? Choose not to exercise?

 

[mango]

A news item on Swedish radio yesterday:

Kritiken ökar mot Socialstyrelsens rapport om postcovid
https://sverigesradio.se/artikel/kritiken-okar-mot-socialstyrelsens-rapport-om-postcovid

Increasing criticism of the National Board of Health and Welfare's report on postcovid

2:04 min

Criticism is increasing against the National Board of Health and Welfare's new recommendations for the treatment of patients with postcovid and related conditions.

Ekot has been in contact with a number of researchers, doctors and patient organisations - all have objections to the National Board of Health and Welfare's new knowledge support.

‘The report is so general that it is not a good support for doctors at the country's health centres, which treat most patients,’ says Per Julin, chief physician at Karolinska Hospital.

For example, there are several groups of patients who risk being harmed by the call for physical activity. This is the conclusion of Per Julin, a consultant physician at Karolinska Hospital who works with patients who have suffered serious sequelae after an infection.

‘If you constantly have these severe setbacks, you counteract the healing process. We also see this in these patients who have a more severe form of palpitations and get a very strong heartrate increase just by standing up. When they try to exercise, they experience severe deterioration, and their bodies simply take a beating.’

Malin Nygren Bonnier is a physiotherapist and associate professor of physiotherapy at Karolinska Hospital in Stockholm. She notes that her profession is almost always in favour of exercise, but there are exceptions.

‘It's even in the WHO recommendations that we should look at whether the patient is not oxygenating, and it's very important that this is made very clear, that there is a warning flag on it.

But Thomas Lindén at the National Board of Health and Welfare stands by the agency's assessment.

‘There has not been enough evidence to recommend them to refrain from physical activities at group level.’

(It really annoys me that Lindén keeps talking about something different than what the criticism is actually about. Is he not listening at all, or is it the editing? )

 

[mango]

A news item on Swedish radio this morning (2 minutes):

Kritiken: Nya riktlinjer för postcovid kan leda till patientskador
https://sverigesradio.se/artikel/co...ar-socialstyrelsens-riktlinjer-for-behandling

Dr Lisa Norén says there are two problems: there is not enough clarity about the different conditions, and sometimes what is written is completely wrong (for example recommending gradually increased activity, because it can cause iatrogenic harm).

Thomas Lindén, Socialstyrelsen, says that there is not enough evidence to defend recommending patients with certain conditions to refrain from* exercising. Regarding describing the illness in more detail, he replies that it's a matter of time (meaning future research will give us more knowledge).

* The word used was "avstå". I'm not sure how best to translate it. Abstain from? Choose not to exercise?

Covidföreningen: Nytt kunskapsstöd kan leda till allvarliga patientskador
https://lakartidningen.se/aktuellt/...sstod-kan-leda-till-allvarliga-patientskador/

The Covid Association: New knowledge support can lead to serious patient harm

The knowledge support on post-covid treatment recently presented by the National Board of Health and Welfare may lead to serious patient harm. This is according to the Swedish Covid Association. Sometimes what is written in the support is completely wrong, says doctor and spokesperson Lisa Norén.

‘The knowledge support has been long-awaited because not many doctors have received sufficient training about post-covid,’ says the specialist in general medicine, who is also the association's spokesperson, in an interview with Swedish Radio Ekot. But when the support came, it raised questions.

- ‘One problem is that the knowledge support does not state the various conditions clearly enough. And the other is that what is written in the knowledge support is sometimes completely wrong.

One such error, according to the association, is the encouragement of exercise.

The knowledge support states that ‘treatment and rehabilitation need to be based on the patient's individual level of function and activity and work gradually to increase this’.

However, the Swedish Covid Association points out that the World Health Organisation (WHO), among others, indicates that physical exertion can worsen the situation for some post-covid patients.

- ‘If a doctor at a health centre gives this advice in all good faith, there is a risk that it will lead to harm,’ says Lisa Norén.

But the National Board of Health and Welfare says there is not enough support in research to advise against exercise for certain conditions. And when it comes to more detailed descriptions, Thomas Lindén, head of department at the National Board of Health and Welfare, tells Ekot that the recommendations may become clearer in the future as research provides more answers.

The Swedish Covid Association will send its analysis to the National Board of Health and Welfare and the Ministry of Social Affairs.

 

[Clementine]

A news item on Swedish radio this morning (2 minutes):

Kritiken: Nya riktlinjer för postcovid kan leda till patientskador
https://sverigesradio.se/artikel/co...ar-socialstyrelsens-riktlinjer-for-behandling

Dr Lisa Norén says there are two problems: there is not enough clarity about the different conditions, and sometimes what is written is completely wrong (for example recommending gradually increased activity, because it can cause iatrogenic harm).

Thomas Lindén, Socialstyrelsen, says that there is not enough evidence to defend recommending patients with certain conditions to refrain from* exercising. Regarding describing the illness in more detail, he replies that it's a matter of time (meaning future research will give us more knowledge).

* The word used was "avstå". I'm not sure how best to translate it. Abstain from? Choose not to exercise?

In this context, I think "avstå" kan be translated to "avoid". Normally, it isn't the best translation ("refrain" would be beter in most contexts). In this case however, I think that's what's influencing his defence and how he's phrasing it. He and Socialstyrelsen probably don't want to be accused of favoring avoidance and encourage patients to not excercise, because they have bought into the BPS-idea of avoidance as a central cause to our symptoms. I feel like I'm not explaining this well but I think his reasoning makes more sense (in its own, twisted way) if we see it as a reference to avoidance ideas.

 

[mango]

In this context, I think "avstå" kan be translated to "avoid". Normally, it isn't the best translation ("refrain" would be beter in most contexts). In this case however, I think that's what's influencing his defence and how he's phrasing it. He and Socialstyrelsen probably don't want to be accused of favoring avoidance and encourage patients to not excercise, because they have bought into the BPS-idea of avoidance as a central cause to our symptoms. I feel like I'm not explaining this well but I think his reasoning makes more sense (in its own, twisted way) if we see it as a reference to avoidance ideas.

Thank you so much for sharing your thoughts on this, much appreciated I too am getting the impression that he's basically talking about (fear-based) avoidance, but at the same time I was thinking maybe I'm reading too much into it...

 

[rvallee]

There's still not a damn bit of evidence that exercise is an effective treatment for any part or whole of this condition, and yet they're still at the stage where they defend it like it's the last bottle of water in a very large desert.

No one has any idea why they're even pushing this. They just push it reflexively, because it takes all responsibility away from them.

This has to take the all-time crown for "smart people promoting dumb things without a clue as to why".

 

[mango]

Opinion piece in SvD today, signed by Jonas Bergquist, Björn Brageé, Olli Polo, Jonas Axelsson and others.

”Socialstyrelsen försämrar ME-vården”
https://www.svd.se/a/nyL4Jd/debattorer-socialstyrelsen-forsamrar-me-varden

‘The National Board of Health and Welfare is worsening ME care’

The National Board of Health and Welfare's new recommendations for post-infectious conditions have been met with astonishment among doctors and risk harming an already vulnerable patient group. This is according to several commentators.

 

[mango]

Opinion piece in SvD today, signed by Jonas Bergquist, Björn Brageé, Olli Polo, Jonas Axelsson and others.

”Socialstyrelsen försämrar ME-vården”
https://www.svd.se/a/nyL4Jd/debattorer-socialstyrelsen-forsamrar-me-varden

SvD's Facebook post about the opinion piece, for those who are interested in reading the comments.

 

[mango]

MEdagboken on Instagram wrote a really important piece in August, and I think it's definitely worth repeating again in this context.

ME sufferers in Sweden face a choice. Either we push the line that treatment in healthcare should be based on evidence, advocate for more and better studies and are safety-conscious. We can then take the line that healthcare should not be able to force us into treatments with an unclear risk profile or treatments where there are many indications that it is harmful. Experiments may be conducted in scientific studies and are not something that, for example, the Swedish Social Insurance Agency should be able to force us to do. Then we can argue that we should not have treatment recommendations that include gradually increased exercise (GET), because there is actually no evidence for it.

Or we can say that evidence is not important and that we should be free to experiment on ourselves and test interventions even outside studies. Then we can argue that we should be allowed to test treatments that completely lack evidence or where it is unclear. This means that we give the healthcare system free rein to also treat us with GET, outside of studies, and it gives the Swedish Social Insurance Agency the opportunity to demand that we test GET. The most seriously ill are sacrificed in this scenario, and more people are at risk of becoming seriously ill from the experiments.

As long as you choose one of these lines, you can argue credibly, because you are consistent and logical. But you can't mix and match and choose what suits the moment. It is not possible to argue only for what is best for ourselves as individuals, because whatever line you choose, it affects other ME sufferers too.

There is still no evidence for GET in ME defined by criteria where PEM is a requirement. There has, however, been an opinion-forming line for health care to test more outside evidence, and we do not know how much that idea has influenced. The message that it should be allowed to experiment and do things for which there is no evidence in ME patients has been pushed hard by certain forces, and now it is up to everyone to put it in an economic and political context and consider whether it is sustainable in the long term.