The Royal Swedish Academy of Sciences' report on long covid

mango

mango

Senior Member (Voting Rights)
The Royal Swedish Academy of Sciences (Kungliga Vetenskapsakademin) published a report on long covid today.

The portrayal of ME in the report is very problematic, and I feel it needs to be challenged.

Postakut Covid-19-syndrom – långtidskomplikationer av Covid-19
https://covidforeningen.se/kungliga-vetenskapsakademin-publicerar-rapport-om-langtidscovid/

Summary/comments by the Swedish Covid Association:
Google Translate said:
Today, the Royal Swedish Academy of Sciences publishes a report on long-term covid which is based on the current state of knowledge about prevalence, symptom picture and theories about what causes long-term symptoms. It is pointed out that the need for research and knowledge is great, and that we have a unique opportunity to learn about post-infectious conditions.

But above all, something is stated that we as a patient association have long put forward: Long-term complications of covid-19 are a significant public health problem that increases with the spread of infection, and Sweden has in comparison with many other countries taken longer to set up specialist clinics and develop knowledge support for healthcare.

We hope that decision-makers in government, healthcare and politics will take on board the academy's criticisms, and seriously start allocating resources to build the skills needed to deal with the pandemic's largest patient group. This is best done by following the recommendations that the Royal Swedish Academy of Sciences makes in the report, and which are in line with what both the Swedish Covid Association and the WHO put forward:

  • All regions should set up one or more highly specialized clinics for patients with long-term complications of Covid-19.
  • These receptions should involve skills from several different specialties and professions.
  • The collaboration between research and healthcare needs to be strengthened in order to produce, as quickly as possible, a scientifically based knowledge base on how various long-term complications of Covid-19 are to be diagnosed and treated.
  • The victims' experiences are an important part of knowledge acquisition and must become a clearer part of the research process.
  • Authorities, professional organizations, patient associations and research funders must work together to ensure knowledge-based care of people with long-term complications in both primary and hospital care.
Read more: https://s3.eu-de.cloud-object-stora...ge-pdf/2021/04/covidrapport3_210426_FINAL.pdf

Royal Swedish Academy of Sciences: covidrapport3_210426_FINAL
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Here's what the report says about ME:
Google Translate said:
It is sometimes pointed out that many patients examined for post-acute Covid-19 syndrome have diffuse symptoms that cannot be measured or documented objectively, such as fatigue or pain. Thus, they could be considered as part of the previously known group of patients suffering from similar disorders, and which are often interpreted as a post-infectious condition, but without being able to identify the triggering factor or follow the disease development with various samples and tests for longer time.

There are various subgroups, such as myalgic encephalomyelitis and chronic fatigue syndrome (ME/CFS), and it has been argued that these conditions are more likely to be due to psychosocial anxiety and other factors that are channeled into bodily symptoms.

At this stage of the pandemic, it cannot be ruled out that certain cases of post-acute Covid-19 syndrome may be explained in this way. However, we can already draw two important lessons:

1) Many patients with post-acute Covid-19 syndrome show clear deviations in functional tests and laboratory values.

2) There is now a unique opportunity to study the development of one post-infectious condition. A very large number of patients have been affected for a short period, and it is possible to obtain good information about the time of primary illness and course, and in many cases also different test results and function tests in series. There is a lot to learn here, although general principles that may be relevant to other infections.
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I feel very strongly that this problematic portrayal of ME needs to be challenged. Would anybody here be up to writing a comment/letter to the academy? Please? (I'm too ill to do it myself.)
 
mango said:
The Royal Swedish Academy of Sciences (Kungliga Vetenskapsakademin) published a report on long covid today.

The portrayal of ME in the report is very problematic, and I feel it needs to be challenged.

Postakut Covid-19-syndrom – långtidskomplikationer av Covid-19
https://covidforeningen.se/kungliga-vetenskapsakademin-publicerar-rapport-om-langtidscovid/

Summary/comments by the Swedish Covid Association:

Here's what the report says about ME:

I feel very strongly that this problematic portrayal of ME needs to be challenged. Would anybody here be up to writing a comment/letter to the academy? Please? (I'm too ill to do it myself.)
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"it has been argued"

I'm pretty sure no mistranslation can overcome the absurdity of this position. HIV denial has also been argued plenty. Many things have, it may just about be the weakest form of non-evidence there is. It's even lower than "are more likely to be due to X because of [arglebargle]", which is already at a solid 0.

This is really an incredible level of incompetence and impetuous opinion-having. It has absolutely no place in any serious discussion of anything, frankly. There is simply no possible good outcome out of people being allowed to just arbitrarily redefine things as they want in the context of a profession.

And yet nothing matters and it won't even have any consequences for years, if at all. Well, accountability consequences anyway, as it will have plenty of bad consequences, we already that for a fact.
 
As @rvallee points out re "it has been argued," as if it's fact. What about the opposition? They apparently don't get a say in this. Giving complete credence to one side due to perhaps the more favored political government coffer position, is standard practice, with as usual ongoing tragic consequences.
 
mango said:
@Obermann Is there any chance you will be writing a comment or letter to the Academy about this? Do you know if the RME or the RME Scientific Advisory Board is taking action on this?
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Thanks for bringing the report from the Royal Academy of Sciences to my attention. I am afraid that I have had a long and bad relapse in my ME/CFS. I am trying to return to work and currently work 25% from home over VPN connection. I have very limited excess energy, and cannot at the moment engage in any more activities apart from some daily tweets. For that reason, I must refrain from commenting on the report. I don't know if RME is planning a response.
 
A member of the Royal Swedish Academy of Sciences' expert group is quoted in this news article (including a video, 1 minute long, in Swedish):

Professorn om postcovid: ”Sjukvården har misslyckats med patientgruppen”
https://www.svt.se/nyheter/lokalt/v...dscovid-sjukvarden-har-misslyckats-med-varden

Google Translate, English
Auto-translate said:
Professor on post-covid: "The healthcare system has failed the patient group"

[...] Professor Jan Nilsson, a member of the Royal Swedish Academy of Sciences' expert group. And he is critical of the healthcare system, which he says has failed this patient group.

- The knowledge and interest within the healthcare system is not that great when it comes to taking care of those who are affected, he says. [...]

It is not known what causes long covid, but according to Jan Nilsson, one explanation could be the development of autoimmune reactions that cause the symptoms.

- Sometimes the immune system fails to keep track of what is bacteria and viruses and what is the body's own structure, and then the immune system can attack its own body instead.

It is unclear how many people are affected by long covid. Opinions are divided. According to the expert group's report, between 50 000 and 100 000 people in Sweden may have suffered from long covid. [...]

New statistics from the National Board of Health and Welfare are expected at the end of February.
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What is the expert group's current assignment?
Will highlight the remaining gaps in knowledge about the virus and the disease, the state of the art in infection control, vaccination and treatment of covid-19, and the lessons to be learnt about infection control, drug and vaccine development.

- The group will also consider whether the dialogue between the scientific community, governments, public authorities and the health sector can be developed in the future based on the experience of the pandemic.
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ETA: The National Board of Health and Welfare published their updated long covid statistics yesterday (24 February), available to download here.
 
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