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

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..

 

Agree.. it’s a great article. And the fact that Koroshev and Nath have been leading on ME for 4 years and are now familiar, connecting the dots, planning the same type of research protocols — its huge. To see their names attached to long covid gives me so much hope.

 

Why indirectly? It’s not indirect — there is a percentage of long covid that will be ME. If you are reading the accounts of their stories, it is clearly ME. People with long covid clearly describe not just chronic fatigue but PEM after activities and including brain fog, OI or pain. I’ve read all the articles and am in the Facebook groups. Fauci, Koroshev and Nath at NIH are clear that it is leading to ME in some cases.

By summer, once the US is vaccinated, the focus will shift to helping long covid in general, incl 1 to 2M new ME patients, and they already have the media on their side to keep up public and political pressure. Some are already one year into illness, so, the data as they become two year and three years ill patients will be a huge boon.

As for the UK, I know BPS is entrenched, but with the progress and changes in research, their days are numbered. I’m sure that young researchers are fascinated and will see post-viral illness as a new and viable field. Scientific research made huge strides in past year, just in the pace of how people are working. Plus, gene therapy and editing is still in its infancy but there are so many companies doing new exciting work. Al the “omics” work.. I think we are at the start of a really exciting time.

 

I was wondering whether it might be worthwhile for @Chris Ponting to apply for funding for his GWAS study in the US. They have $1.15 billion for long Covid and MIS-C and there might be no one else who might take on such a mammoth project.

@Simon M

 

I find it also incredibly annoying that the ME community have been trying to 'explain' what became known as PEM for ages, and now suddenly due to them adopting the term for long-covid they
"know" exactly what it is.

 

That's the one benefit of rock bottom: there is no bottomer point, it is the bottomest of points. Seeing medicine's reaction to LC really sells the point that the BPS ideology is fully embraced at a level I did not think was so total. It can't really get any worse. It may not get better but it can't be worse than the status quo. So the worst case is just the same old nonsense, while the best is a complete upending that changes everything.

Frankly if LC doesn't do it nothing will. We will otherwise be entirely dependent on chance for a breakthrough in basic research. But it won't get worse, it literally can't.

But seriously long haulers need to start getting mad and quick. This hope that medicine will deliver something it clearly cannot do is badly misplaced and because of the asymmetry involved, BPS research is quick and cheap with zero requirements, while real research is the exact opposite. Playing nice with "please and thank you" won't work here, there are people seriously motivated at doing everything to cancel all of it and keep the ideology as is. Everything about us without us.

 

It would be 'naive' to think that things can't get worse.

They can.

 

There is some discussion of long Covid in this newspaper article
https://twitter.com/user/status/1360644516492029957

 

Good to see the following message on exercise and PEM coming across from dr. Daniel Griffith in his latest clinical updated at TWIV (at 19.20 min)

I also want to talk a little bit about treatment here. I still find it frustrating, I’m sure a lot of our listeners who have Long Covid find it frustrating, that we still don’t have a lot of really good data driven interventions to help with Long Covid. We’re actually, we take care of a lot of long Covid patients here in New York at Pro Health, but we’re trying to consolidate our Covid care so we can really learn from each other, learn from patients, so..

I think one of the big things I just want to throw in here before we close is that people who have Long Covid, who are having problems exercising, having problems going upstairs. There’s this subset that has a significant post exertional malaise issue. These aren't people who can just buck up and gradually increase their exercise. These are people who need to be treated differently, so you really want to screen for that in your guidance of what these people are going to be doing.

https://www.youtube.com/watch?v=DdDRbSI6DLU

 

Not necessarily the UK, but it's pretty much certain that at least one country will do this. And if done, it would be in such a way that guarantees the maximum number of LC cases because the most vulnerable population to LC will be vaccinated last. Especially for countries that may already have decided to go with this, there will be extra motivation to completely deny LC and inflict maximum harm on their patient population.

This is an obvious non-starter taking LC into account. But so far no country takes it seriously enough for it to impact the decision. For any country that went the France, Norway or Sweden way and just straight up treat it as mass hysteria, it's too easy to make the wrong decision.

https://twitter.com/user/status/1360181880319078403

 

The Swedish National Board of Health and Welfare has added a section on “post-infectious condition after covid-19” to their decision-support guidelines for medical insurance.

Doctors can use this as a guide when prescribing sick leave. It can also be used when assessing a person’s ability to work. The Swedish Social Insurance Agency (Försäkringskassan) also sometimes uses these guidelines.

Socialstyrelsens försäkringsmedicinska beslutsstöd för postinfektiöst tillstånd efter covid-19 (U099)
https://roi.socialstyrelsen.se/fmb/postinfektiost-tillstand-efter-covid-19/705

Google Translate, English

Their guidelines are partly based on the Swedish Agency for Health Technology Assessment and Assessment of Social Services’s (SBU) reports:

Long-term symptoms of the disease Covid-19
https://www.sbu.se/en/publications/sbu-bereder/long-term-symptoms-of-the-disease-covid-19/

Swedish version: Långvariga symtom vid covid-19
https://www.sbu.se/319

Here are the Board's rehabilitation guidelines for covid-19 in primary care:
https://www.socialstyrelsen.se/glob...kument/artikelkatalog/ovrigt/2020-11-7017.pdf

***

The Board currently offers no medical insurance guideline for ME/CFS. In their 2018 report they said “[our] assessment is that it is currently not possible to draw up national guidelines with general advice in this area”, citing lack of scientific evidence and lack of consensus within the profession.

For comparison, here’s the Board's report on ME:

A review of the current knowledge status for Myalgic encephalomyelitis/chronic fatique syndrome, ME/CFS
https://www.socialstyrelsen.se/glob.../artikelkatalog/ovrigt/2018-12-48-summary.pdf

And here’s the SBU report on ME (2018):

Myalgic encephalomyelitis and Chronic Fatigue Syndrome (ME/CFS)
https://www.sbu.se/en/publications/...omyelitis-and-chronic-fatigue-syndrome-mecfs/

ETA: The lack of medical insurance guidelines is not neccessarily a bad thing, as they can be used as a way to limit/minimize sick leave etc.

 

https://twitter.com/user/status/1355974212989685760

 

Dr. Fauci Warns These COVID Symptoms May Never Go Away

https://www.yahoo.com/lifestyle/dr-fauci-warns-covid-symptoms-124158665.html

 

Code:

https://twitter.com/TomKindlon/status/1361076764110446598

 

Long Covid ‘could cost UK around £2,500,000,000 a year’

https://metro.co.uk/2021/02/10/long-covid-could-cost-uk-around-2500000000-a-year-14050266/