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

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:

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:

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:

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.

 

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

 

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.

 

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.

 

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

 

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/

 

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:

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.

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.

 

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.

 

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?

 

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

(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? )

 

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

 

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...

 

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".

 

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.

 

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