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

Socialstyrelsen, Sweden's National Board of Health and Welfare, published national guidelines for post covid, post influenza, post sepsis, post intensive care syndrome, ME/CFS and PANS/PANDAS today.

As many of you already know, there were no national guidelines for ME in Sweden, so this is pretty big news. And it's not looking good at all

The guidelines are in the form called "kunskapsstöd" (literally "knowledge support"), a kind of state of the knowledge report.

Link to the report (.pdf, 48 pages, in Swedish):

Postcovid och andra närliggande tillstånd och syndrom
https://www.socialstyrelsen.se/glob...t/artikelkatalog/kunskapsstod/2024-8-9183.pdf

 

Auto-translated from the report:

"Postcovid and other related conditions and syndromes

Executive summary

This knowledge support covers post-covid, post-influenza, post-sepsis, post-intensive care syndrome, chronic fatigue syndrome (ME/CFS) and paediatric acute-onset neuropsychiatric syndrome (PANS/PANDAS). It is primarily aimed at those who meet patients in primary care, but also in specialised care or in social services. You will be supported in choosing appropriate interventions for different symptoms.

Weak knowledge today and a continued extensive need for knowledge

There are few relevant and well-conducted treatment studies for the conditions in question, and the majority of those that do exist concern post-covid. Only a few studies have been found for interventions for the other conditions.

The state of knowledge for post-covid is developing favourably, and new research on treatment and rehabilitation interventions is constantly being added. However, this does not apply to the same extent to the other conditions in the knowledge support: post-influenza, post-sepsis, post-intensive care syndrome, ME/CFS and PANS/PANDAS. Common to all conditions, including post-covid, is that there is still a significant knowledge gap.

Offer symptom relief

Many of the clinical symptoms of the conditions in question overlap, but although there is currently insufficient knowledge of the underlying mechanisms or evidence-based treatment for a diagnosis, the patients' symptoms are well recognised in healthcare. Therefore, thanks to the experience of caring for patients with similar symptoms, there is often good symptom relief to offer them.

When the cause of the condition is not clear or when there is no targeted evidence-based treatment, it is important to focus instead on providing symptom relief as far as possible and on compensating for the symptoms with different strategies and assistive devices, to promote activity and participation.

Within these conditions, there is a very wide variation in the severity of symptoms and functional impact. Individualised and person-centred assessment is therefore of great importance.

The underlying mechanisms are unclear

The conditions included in this knowledge support differ in several respects, but have in common that they are not medically or scientifically clear-cut. For some of them, the link to previous infection is unclear, i.e. it cannot be said with certainty that they are post-infectious as the causes of the conditions are not clear. There is also no evidence-based approach to the assessment, treatment and rehabilitation of patients with these conditions."

 

News article by the National Board of Health and Welfare (in Swedish)
https://www.socialstyrelsen.se/om-s...ess/sa-far-patienter-med-postcovid-bast-vard/

 

More from the report:

 

RME, the Swedish ME Association, has previously been involved in developing these guidelines. They published a short news article on their blog today.

 

More from the report:

 

More from the report:

 

More from the report, on cardiovascular symptoms:

 

The old "You're simultaneously a mentally frail malinger and an overachieving perfectionist"

 

I felt gutted reading the new guidelines yesterday. So much so that I hardly slept last night.

These guidelines are used by doctors all over the country, and the National Insurance Company loves to cherry-pick quotes from them when they deny disability.

There are many problems with the text, but the chief among them is that the authors state that ”tiredness” can be treated with ”gradually increased activity.”

First of all, what I feel is not ”tiredness”, that word is a gross missrepresentation. What I feel is a complete lack of energy, an exhaustion that is so deep it actually hurts physically. It is trivial and inaccurate to characterize my symptom as ”tiredness”.

Second of all, the guidelines contradict themselves. On the very first page it is stated that the causes of Post Covid and related illnesses (ME/CFS included) are unknown. Later on they say you can treat ”tiredness” in these diseases with ”gradually increased activity”.

Isn’t that illogical? They say the don’t know the causes, but they are confident in regards to treatment, despite the lived experience of so many patients who repeatedly point out that GET leads to deterioration. I, myself, went from mild to severe after intense GET under the supervision of a physiotherapist.

 

Looks like a huge mess to me. Just treat symptoms. How? Just do it.

We've always been at war with East Asia. East Asia does not exist. East Asia is a crucial ally in our war with West Asia. The combined forces of East and West Asia have been crushed. Asia has never existed.

They don't have a damn clue and aren't paying attention to anything. Still trying to find magical explanations that will simply overrule the damn universe.

They're still insisting that all you need to do is rehabilitation, and if rehabilitation doesn't work, then you need more rehabilitation, with more magical hopium or whatever. Rolling up your sleeves doesn't work? Roll them up higher!

Good grief. They trapped themselves in a bind based on magical fairy dust and can't admit it, so they generally just make stuff up hoping that no one will notice or care. They're basically trying to trickle in some bits of truth while changing nothing. Ugh.

Things are generally looking like the worst of both worlds: the are begrudgingly dragged kicking and screaming into admitting that what they have insisted for decades is bullshit that doesn't exist may, perhaps, be a problem but just follow the same steps that never worked, as before, and it'll all be fine. There are good bits, but they are immediately overruled by the traditional nonsense.

 

Simultaneously too tall and too short. Average height? Way too average, that's the danger zone. No one finds any problem with any of that BS. Absurd.

 

Reduced fitness and muscle function lead to fatigue even in everyday activities.

That is incorrect. (well most is incorrect but this is just a small sampling of the rubbish)

So did the Swedish ME association provide information and then it was completely reworked by the people doing the guideline? How disappointing for pwME and LC and the potential harm.

 

I generated an English PDF with DeepL and had a very brief skim.

From the physical exercise section:

This is just absurd, as there are reports of negative effects from physical exercise in the literature. In fact I think even some of the psychosomaticians acknowledge that.

In the "offer rehabilitation" section, there's no mention of PEM at all, or any acknowledgement that ME/CFS patients can't be rehabilitated out of it.

There doesn't seem to be any acknowledgement in the social services section of just how severe ME/CFS can become:

This is a poor description of PEM:

The list of what to offer for fatigue:

I'm also not sure that PANS/PANDAS should be regarded as a discrete syndrome; last time I looked into this I thought the evidence for it was lacking.

There are some interesting statistics in the report, both for post-COVID:

and for ME/CFS:

 

I’d be interested in this too

along with whether Cochrane / larun has been referenced anywhere ?

 

Interaktiv karta Insatser vid postcovid och andra närliggande tillstånd och syndrom
Den interaktiva kartan är baserad på rapporten Insatser vid postcovid och andra närliggande tillstånd och syndrom – en kartläggning

https://www.sbu.se/fullpagetablevie...llstånd och syndrom – en kartläggning&lang=sv

 

Automatic translation of whole pdf

 

Paywalled news article in Dagens Medicin, a news website for healthcare professionals.

Socialstyrelsen: Så bör postcovid och liknande tillstånd hanteras
"Kunskapsläget är fortfarande skralt, men Socialstyrelsen lyfter vikten av symtomlindrande behandling så långt det är möjligt vid postcovid och fem närliggande tillstånd. Kunskapsstödet riktar sig främst till primärvården."
https://www.dagensmedicin.se/specia...or-postcovid-och-liknande-tillstand-hanteras/

 

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