News about Long Covid including its relationship to ME/CFS 2020 to 2021

Thanks for posting!

 

This morning on the telly they talked about a new Swedish study by Karolinska Institutet and Karolinska University Hospital on long covid patients. Judith Bruchfeld and Mikael Björnson were interviewed.

The main message seems to be that there are clear differences between the two groups that were studied. The first group was people who have been hospitalised for covid-19 (mostly men, older, higher BMI etc), and the second group was people with long covid who haven't been hospitalised (mostly women, younger, lower BMI, more active/fit compared to the other group before onset, previously healthy).

The second group (not hospitalised) are doing worse on the long-term follow-up tests like the 6-minute walking test, muscle strength on inhalation etc. Their functional ability has been even more negatively impacted compared to the previously hospitalised patients'.

Bruchfelt believes the long term effects is an umbrella concept, where patients can have different disease mechanisms. It's possible that the mechanisms for the two groups are completely different. She believes it's important to find out why this is, on a molecular level, in order to develop better treatments and hopefully eventually a cure.

What can be done to help them? Bruchfeld says that diagnosis is important, for example POTS and autonomic dysfunction because there are many different treatments available, as well as individualised rehab. Also dysfunctional breathing, because there is physical therapy that can help a lot. It's important that the patients are assessed by specialists.

https://www.tv4.se/klipp/va/13359160/ny-svensk-studie-om-postcovid

 

This looks very interesting. But seems the study isn't published yet? I can't find it.. Do you know the title?

 

No, sorry I haven't been able to find any info besides this tv interview. The ki.se website seems to be down today, I haven't been able to access it to check if they have published anything in their news section. Haven't found anything on dagensmedicin.se either, nor on any of the other news websites (that don't use a paywall).

 

Does anyone know of long covid groups that focus on advocacy at the European level?

 

https://twitter.com/user/status/1434757756167229440

 

https://twitter.com/user/status/1434758023268864003

 

From S. Africa

"Covid-19: Clearer picture of #longCovid slowly emerging"

https://www.news24.com/health24/med...icture-of-long-covid-slowly-emerging-20210908

Mentions a group of patients "has symptoms very similar to #chronicfatiguesyndrome”

Later mentions "SARS-CoV-2 has triggered a #postviralfatiguesyndrome” in some

 

https://twitter.com/user/status/1435712077029466112


"Chronic fatigue". Ugh. Still complete basic vocabulary fail.

 

I can't access the abstract. Quickly looking at the slides, I can't see any reference to "chronic fatigue syndrome".

The article says this which does sound like it is referring to a diagnosis of chronic fatigue syndrome, but I would like something more definite:

---
I found this interesting:

 

Långtidssjukas kamp för att orka med vardagen – ”som ett dåligt batteri”
https://www.aftonbladet.se/nyheter/...-att-orka-med-vardagen--som-ett-daligt-batter

Åsa Kristoferson Hedlund, the Swedish Covid Association, is interviewed too.

Google Translate, English

 

Opinion piece on a Swedish website/magazine for healthcare professionals.

”Lyssna på patienter med långtidscovid”
https://www.dagensmedicin.se/opinion/debatt/lyssna-pa-patienter-med-langtidscovid/

Google Translate, English

 

According to dr Bruchfeld it was published as an abstract at the ERS congress last Sunday.

I've had a look but it seems abstracts are only available to registered participants/members, I think?

https://www.ersnet.org/congress-and-events/congress/clinical-case-abstract-submission/

https://europeanlung.org/en/get-involved/events/ers-congress-2021/

 

Thank you @mango ! I'm sure we'll hear more about the study soon, then.

 

Long Covid has truly revealed the sham of "learning the lessons of the AIDS crisis". The main lesson of the AIDS crisis has been "nothing about us without us". Not only has this lesson not been learned, it's effectively worse this time around, with zero understanding of the overlap every time it comes up. Not only has it not happened since anywhere, in our case it's basically taken a weaponized form, where patient involvement is attacked as a negative, as unacceptable.

There is zero interest within medicine to work with patients and frankly at this point I think that this is by far the biggest obstacle to progress in medicine going back several decades, even more significant than mere difficulty. This is basically artificial difficulty and it's stuck everyone at the same level for decades, in some cases going back a full century.

Because the one thing worse than not learning lessons from a major crisis is to genuinely believe, or at least proclaim, that you have, then show blatantly how nothing at all was learned, which makes it impossible to actually learn since what more is there to learn if you've already "learned" it so well that it's celebrated as an event?

Medicine is basically facing a crisis of its own making, having largely stopped progressing, outside of cutting edge technology, not because of technical or scientific issues, but over culture and politics, including actual failure of basic vocabulary and absurd failures like category errors and false attribution. And this is almost all because of this pervasive refusal to consider the patient experience as useful, a necessary source of information that is simply dismissed without a valid reason other than mere tradition and culture.

In a sense this is similar the failure of dealing with climate change. We have the technology and the industrial capacity for it, but it's not happening because of culture and politics.

 

CDC article (MMWR)
on long-term symptoms among adults https://www.cdc.gov/mmwr/volumes/70/wr/mm7036a1.htm?s_cid=mm7036a1_w

PEM is mentioned and defined as "Worsening of symptoms after even minor physical, mental or emotional exertion." No discussion of onset, duration, severity.

 

Today's programme of Times Radio - Catch up with Kait Borsay - was about Long Covid. First part is about Long Covid and ME with drs David Strain and Asad Khan as well as Sonya Chowdhury, second mostly about Long Covid.

Begins after 1 hour and 6 minutes. Factual and informative, but nothing new.
https://www.thetimes.co.uk/radio/show/20210910-6141/2021-09-10

ETA:

 

https://twitter.com/user/status/1435875627073093634

 

https://twitter.com/user/status/1436570199394689029