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

Ist there any information yet if the vaccines prevent LongCovid, too?

From what I understand, they prevent severe illness & death.

But if LC is not correlated with symptom severity, can a vaccineted person still get it?

 

COVID-19 Syndrome and Chronic Fatigue Syndrome (ME/CFS) following the first pandemic wave in Germany: a first analysis of a prospective observational study

Thread on this study here:
https://www.s4me.info/threads/prepr...n-germany-kedor-et-al-2021.19076/#post-323407

 

Long-Haul COVID Cases Cast New Light on Chronic Fatigue Sufferers

https://www.cancerhealth.com/article/longhaul-covid-cases-cast-new-light-chronic-fatigue-sufferers

 

https://twitter.com/user/status/1358744293230403584

 

Code:

https://twitter.com/IrishMECFSAssoc/status/1359175506684428289

 

Don't know whether this was posted before or not. Has a few mentions of ME/CFS.

https://www.journaljammr.com/index.php/JAMMR/article/view/30781

 

Doesn't look great on a quick skim:

https://www.researchgate.net/public...-19'_The_Long-term_Complications_and_Sequelae

 

Newsweek has long gone down the drain when it comes to political news reporting, so forgive me but this article is relevant. They mention LC ME/CFS relationship too and feature NINDS.

Newsweek Magazine:
COVID-19 Could Increase Dementia, Other Brain Disorders for Decades to Come

 

https://twitter.com/user/status/1359552575679307776


https://twitter.com/user/status/1359555109558996992


https://twitter.com/user/status/1359556626101850117

 

Pretty good. It's really fortunate that this happened at the tail end of years of efforts. Even though those efforts were not accomplishing anything, it set the stage for the NIH to be the only serious player. So far I have seen nothing elsewhere that doesn't reek of BPS, though most countries aren't even trying and clearly waiting on the NIH to do all the work. Medicine is so insular, hardly any cooperation going on.

If cognitive dysfunction continues to be treated with the respect I have seen so far and reported here, it would change everything. Even if nothing else improves, if we could have our wits back, we would be able to do all the things we currently cannot do, we would be able to fight on even ground, to defend ourselves personally with physicians, to effect change locally and to bring about global efforts.

It's seriously weird that medicine paid zero attention to this until now. It shows how dysfunctional it is to cede ground to psychology in medicine, all it ever accomplishes is cause harm and impair progress.

 

The administrators of Sweden's largest(?) support group for people with covid and long covid on Facebook published a new FAQ/help post last week. I won't share too much since it's a private group, but I thought you might be interested to know that their first recommendation is GET.

They describe GET as "a well-established rehabilitation method for other diseases", and claims that "it works for some long-term ill people". They don't cite any sources, but refer to Sveriges Arbetsterapeuter (the Swedish Association of Occupational Therapists) for advice on how to apply the method.

They recommend pacing as well (referring to a study called Management of post-acute covid-19 in primary care), and -- in the paragraph about pacing -- mention that GET might make some people worse. They also stress the importance of having patience, listening to the body, avoiding over-exertion etc.

The post was written by a person who is on the board of the Swedish Covid Association. The association is currently developing a folder/info material, so it will be "interesting" to see if GET will be the first recommendation there too.

 

Sounds like they dont understand how GET and pacing is mutual exclusive for people with PEM.

And looking at what SW et al. are saying publicly it really is confusing.

 

Hour long video/podcast where they both acknowledge the help and assistance that has been given to Long Covid patients by the ME/CFS community.
The timings of the best excerpts are within the tweet.


https://twitter.com/user/status/1359480196802502660

 

Physical Therapists Living With Long COVID, Part 2: When "Keep Pushing" Isn't the Answer

https://www.jospt.org/do/10.2519/jospt.blog.20210210/full/

https://twitter.com/user/status/1359771551978160128

 

Given this was written by a psychiatrist, I had low expectations but I thought it was thoughtful enough; it was just a pity it suggested exercise and the like
—-
Source: Psychiatry & Behavioral Health Learning Network
Date: February 10, 2021
Author: Holly Hendin
URL:
https://www.psychcongress.com/article/post-covid-syndrome-psychiatric-clinic


Post-COVID Syndrome in the psychiatric clinic
---------------------------------------------
Addressing the Unique Challenges of the Post-COVID Patient

 

As I see it when covid started and the first LC people appeared with symptoms it was always going to be unclear how to proceed. While I think most have stepped back from vigourous exercise and now stress an approach like this one:

The problem is not knowing who will go on to recover naturally and who will not. Without this biological data exercise will not be seen as problematic when some people do recover.

 

Chronic Fatigue Syndrome After COVID-19 Infection: A Call for Action
Pradyumna Pan1 , Ritika Pan2

A hodge-podge of bits of info. Not sure it says anything new or noteworthy
https://jag.journalagent.com/erciyesmedj/pdfs/EMJ_43_1_98_99.pdf

 

I am getting increasingly worried by the constant use of PEM as a symptom of longcovid. They do not define it anywhere so I think it most likely they are talking about malaise after exercise. "I feel bad when i exercise". the BPS people have been trying to change PEM to mean this.

The original wording for ME was an abnormal response to exercise i.e. not the response to exercise you would expect so getting breathless and fatigued when you have a post viral or have had lung damage or heart problems is the expected response. The CDC with the fukuda definition (helped by Michael Sharpe) made this optional and gave it an ambivalent name.

The point about our "PEM" is that we get unexpected things when we exercise. There is often a delay in any problem, there are immune symptoms, rest does not help and it can take days or weeks to get back to the original point. Mental effort causes physical symptoms and vice versa.

It may be that lots of longcovid people get the same PEM as us but we don't know. This confision may be why Paul Garner thought he fit the definition for CCC

 

Def not me..
I think post covid ME, and ME itself will be the AIDS of the next decade in terms of research attention. I can’t think of a more explosive positive change to happen to our disease. I expect the 1.15B for NIH will open up a whole new field of research..