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

It's well worth a listen to the podcast with Simon Decary if you can manage it - he started off with a grant for a research programme for Long Covid including exercise. When he received feedback from people with ME on social media, he paused his research and has gone off and read up on everything including the PACE trial and has now shifted his emphasis into research for people with ME. I think he is still doing his Long Covid trial but looking at stop rest pace as the underpinning principle rather than exercise.

As physios for ME we have been in touch with him and hopefully will continue to work with him (watch this space for more info)

Compare and contrast with the REGAIN study.......

 

Code:

https://twitter.com/TomKindlon/status/1358099808318337030

 

Long COVID: tackling a multifaceted condition requires a multidisciplinary approach

https://www.thelancet.com/journals/laninf/article/PIIS1473-3099(21)00043-8/fulltext

 

Decoding the unknowns in long covid

https://www.bmj.com/content/372/bmj.n132

 

For what it is worth:

Post-COVID-19 Symptom Burden: What is Long-COVID and How Should We Manage It?
https://assets.researchsquare.com/files/rs-164000/v1/c2f9af85-34fd-4b63-9f40-629847cfd4e2.pdf

 

Preprint: Preliminary Evidence on Long COVID in children

https://www.medrxiv.org/content/10.1101/2021.01.23.21250375v1.full-text

 

The Japan Times Japanese doctors warn of long-lasting COVID-19 aftereffects among young people

It is important for people who have recovered from COVID-19 to refrain from exercising for a while, Hirahata said, warning that just taking a walk can cause their condition to deteriorate.

“In one case, a patient became bedridden after exercising forcibly and was dismissed from the workplace,” he said. “I want the government to earnestly tackle the problem by taking measures such as letting the public know of the issue so that patients who suffer from the aftereffects will not face disadvantages.”

 

Hmm.....

 

Last week an independent group of Swedish physicians with long covid published clinical guidelines for long covid.
http://www.langtidscovid.se

There's a news article on this in the journal of the Swedish Medical Association:

Läkartidningen: Läkare med långtidscovid publicerar kunskapsöversikt

"A group of doctors who themselves have the disease are now publishing their own knowledge review about long covid, while waiting for the National Board of Health and Welfare to publish something."

 

An easy way to suggest it's all about a maladaptive stress response and unhealthy behaviour, maybe? Put the blame on the patient instead of the virus?

The original news article they are referring to is behind a paywall.

 

Not terrible but they have clearly not looked much beyond their own experience, it's very limited. Hard to expect much, but it's definitely a good thing not to wait for medical authorities, they have clearly no intention of doing anything to risk their beloved herd immunity. Doubtful this goes anywhere, frankly.

At least they warn against GET. Otherwise it's frankly mostly poor or generic and seems to assume that it's just a matter of trying unless there is organ damage. Positive thinking is good in most circumstances but misguided hope helps no one. Frankly most patients groups with no input from physicians do better, as at least they research existing information on chronic illness. Here they wear their physicians hat and bring with them the flawed thinking that has dismissed chronic illness forever.

 

The Swedish government has proposed that 50 million SEK be earmarked for long covid research. The Swedish Research Council (Sweden’s largest governmental research funding body) has now been tasked to prepare for distributing the money.

https://www.regeringen.se/pressmedd...gallande-forskningssatsning-om-langtidscovid/

 

Sahlgrenska University Hospital in Sweden is starting a long covid study.

They will investigate what symptoms are common among those who have not been seriously ill, but have been having symptoms for a long time. More than 55 000 people will be invited to participate.

https://www.svt.se/nyheter/lokalt/vast/ny-covidstudie-inleds-pa-sahlgrenska

 

A couple more articles today in Sweden, about long covid.

https://tt.omni.se/manga-med-langtidscovid-kanner-sig-misstrodda/a/OQjplO

https://sverigesradio.se/artikel/flera-med-langtidscovid-kanner-sig-misstrodda-av-varden

It doesn't sound like the National Board of Health and Welfare realizes the severity of the problem, does it? Just like stigmatization and discrimination related to ME it is often talked about in the past tense, as if it isn't still happening. Why? So there's no need to actually take responsibility and do something about it?

 

From a Solve email

Solve M.E. President Oved Amitay Joins World Health Organization Seminar on Long COVID

Solve M.E. President and CEO Oved Amitay will join other experts as a participant in a series of seminars presented by the World Health Organization (WHO) designed to improve our understanding of the Post COVID-19 condition and optimize the health of patients who have suffered from COVID-19.

Amitay will be featured in the first webinar, Expanding Our Understanding of the Post COVID-19 Condition, held tomorrow, Tuesday, Feb 9, 2021, from 1-6pm CET (4 am-9 am PST). The focus of the webinar will be on finding consensus on the clinical description of Post COVID-19 condition, based on the most up-to-date evidence, acknowledging the uncertainties and defining research priorities.

In it, Amitay will share insights from other post viral diseases, such as ME/CFS, and highlight the scientific opportunity to bridge existing knowledge gaps to benefit people with Post COVID-19 condition, as well other diseases.

The goal of the WHO seminars is to create a forum for sharing scientific data and clinical experiences, while also building collaborations for future research.

To register for this webinar, follow the link below:

http://go.solvecfs.org/e/192652/ster-WN-r1LkC1VRSHCTG7u2nOghjQ/297v2z/190733399?h=Wv8fhTfVGesuyVqoh7OH5U8kSrHXNcT1CGthFLZ8-eY

Upon registration, participants will receive a confirmation email with the information about joining the webinar (Zoom connection details).

Registration will close on Feb 8, 2021 (end-of-day CET).



Discussion of this WHO seminar continues here:
News about the World Health Organisation and ME/CFS, Long Covid and related conditions

 

Opinion piece in DN (Sweden's largest morning news paper) by doctors suffering from long covid themselves:

DN: Sverige senfärdigt kring långtidscovid ("Sweden is late on long-term covid")
https://www.svd.se/sverige-senfardigt-kring-langtidscovid/i/senaste

 

It may bring in more money to describe it as "new" but does it really "differ radically" from other postinfectious diseases.

 

The doctors in the article should come here and find out the reality of 'those other postinfectious diseases'. Seeing this always feels like we're rolling a boulder uphill.

 

The constant highlighting of this made-up separation is clearly a pattern, at least here in Sweden. ME is simply not part of the discussion.

Have a look at all the long covid related Swedish articles (news, medical, opinion pieces, governmental reports, politics, public health etc), and you'll quickly see that ME is very rarely mentioned, or is described as something "other". It's not mentioned by the long covid activists, nor by the doctors at the long covid clinics, the long covid researchers, the primary care health professionals, the politicians, the National Board of Health and Welfare, the government, the Public Health Agency, the Swedish Research Council, the long covid activists criticising the Social Insurance Agency's policies... and so on.

The only ones who seem to been keen on mentioning CFS (ME) and other post infectious diagnoses are those writing opinion pieces about "culture-bound syndromes", claiming that ME doesn't exist, suggesting that "fearmongering" by patient organisations is causing trauma that might cause psychosomatic symptoms and other mental health problems, and those having opinons about so called "high-performing" women's behaviour and mental health etc