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

Investigators at @NTUSg describe another case of postural tachycardia in a patient with COVID-19. This is the second case after the one described by @StanfordMed researchers.

https://link.springer.com/article/10.1007/s10286-020-00733-x

 

Via @DxRevisionWatch

This is a preprint presumably of the paper in question:

https://d212y8ha88k086.cloudfront.n...7e6-198188dab8b3_16307_-_felicity_callard.pdf

If anyone feels inclined, comments can be posted here:
https://wellcomeopenresearch.org/articles/5-224/v1

 

https://www.youtube.com/watch?v=gRJ5_bMggWQ

 

Very, extremely weird people: "malingering losers are faking having COVID because of all the secondary gains and status it gives them."

Reality:

‘I feel devastated’: COVID-19 long-haulers fight for understanding from employers

https://www.fastcompany.com/9055314...aulers-fight-for-understanding-from-employers

But muh "status" and "secondary gains".

 

When we first saw this reply (EDIT the one from Pope) it seemed surprising that a "prehistorian" could, during the period of her illness, have acquired the requisite knowledge of ME to respond with such certainty.

It seems less surprising now that we know one of her co-authors co-authored papers with David and Hotopf whilst at KCL and the Maudsley. It is surprising what "geographers" can be involved in.

 

Karl Lauterbach*, politician and epidemiologist mentions "chronic fatigue syndrome" in German talkshow** as a possible consequence of longcovid.

"serious illness, name is misleading, mainly women affected, people reach out to me on Twitter bc I've been talking about it"

"people can only do a couple of hours work and have to lay down, problems concentrating"

"we see that in other viruses, too and in SARS1 and we assume it's going to be a very important long term problem"

"Study shows 3mnths after Covid 30% still can't work, we don't see that with the flu"

Unfortunately the moderator doesn't go deeper into it and they go back to talk about government restrictions

*I don't think he understands the issue with different definitions yet and especially how severe ME can really get, but he had mentioned in the past on Twitter that exercise makes it worse - so he gets the main problem, I think.

**It's bad quality, I'll post the original when it's out

 

Not a terrible article:

 

I don't recall reading this before in one of these articles:

"People who are asymptomatic or have a mild case of COVID-19 can also face prolonged illness. Sometimes, these symptoms take weeks or months to appear."

Perhaps it refers to organ damage rather than symptoms falling into the ME-like post viral category, I'm not sure.

 

Hmm. Wasn't that what convalescence was for - to help people rest and recuperate while experiencing debilitating after effects post infection?

Perhaps if medicine hadn't been so keen to simply take the word of certain self appointed experts in the 80's we'd know a lot more about post viral long term complications today.

The fact we don't know much about long term post viral complications is because it was more convenient for those in power within the world of medicine not to look. This is entirely the fault of the medical establishment.

 

ABC Net - When Covid Won't go away

What support should be on offer for the so-called COVID long haulers? Some patients who have recovered from the acute phase of the disease have found themselves still struggling with symptoms ranging from severe exhaustion and lung damage to cardiac issues and brain fog. And sniffer dogs are proving themselves to be so adept at detecting coronavirus sufferers, they've been picking up the disease in people who haven't even begun to display any symptoms

Producers: Madeleine Genner and Nick Grimm

Mirabai Nicholson-McKellar, COVID patient

Paul Garner, Professor at the Liverpool School of Tropical Medicine and COVID patient

Julian Elliot, chair of Australia’s National COVID-19 Clinical Evidence Taskforce

Anne-Lise Chaber, University of Adelaide's School of Animal and Veterinary Science.

https://twitter.com/user/status/1309776930275831808

 

I think this means that there can be a period between the initial infection and a later re-emergence of symptoms where the patient may even feel recovered. I have a friend who felt like she was pretty much recovered only to develope symptoms of POTS months later.

 

Yes - I have a memory of 6 months being necessary for convalescence. That's from a long time ago in my life!

 

It would be interesting to know when the concept of convalescence disappeared. A doctor I know told me it was in Kenneth Clarke's time as Minister - mid to late 1980's. But then most things that went wrong started to go wrong then. That may just be my age talking.

 

https://www.theguardian.com/comment...d-casual-but-with-a-sick-sister-thats-changed

 

I found this report, by Linda Mottram, this morning, particularly interesting as it was quite unabashed in putting chronic, post-CoVid-19 symptoms in the same basket as ME/CFS. So far the rule, by the ABC and politicians in Australia, has been to use avoidance language, even when it was quite obvious that they must have been aware of the many similarities. The premier of Victoria, for instance, used "post-viral fatigue" at one of his daily, media conferences. And the ABC's flagship, tv, current-affairs program, "7.30", has, by and large, avoided the obvious. Rarely, it has slipped through, such as in this report in May that also featured Professor Garner:

Coronavirus patients with even mild cases of COVID-19 are taking months to recover and suffering extreme fatigue

In it the Professor was quoted as saying: "It gives you some of the symptoms that are very similar to chronic fatigue but I am hesitant about calling it that," he said. But no context was given for that term and the average listener would have had no clue what he was referring to.

A more typical example is this recent report from "7.30", on 17 September:

Long-term health consequences of COVID-19 becoming clearer

In it, not even the word "fatigue" is used. While it might be that the particular cases featured did mostly have symptoms peculiar to the lung and heart damage, the pattern of reporting for the last six months has been to avoid, avoid, avoid. And they did that very thoroughly here even though they did admit that one of the patients had "brain fog".

But now there appears to have been a shift in policy. A day ago there was this report by Olivia Willis on the ABC's website:

When looking at impact of coronavirus, we can't forget the long-term health effects

In it she wrote: "Self-described as COVID-19 "long haulers", some patients describe debilitating fatigue, difficulty exercising, and general "brain fog" months after their infection has cleared. Dr Short said post-viral fatigue is seen in other viral infections too. "We know that Epstein-Barr virus, which causes glandular fever, has also been linked to chronic fatigue syndrome," she said."

That might sound like pretty standard stuff but even that was unusual. And now the Saturday "A.M." program devoted almost 19 minutes of the 25-minute program to this one report. Amongst much candid discussion of the similarities was this from Julian Elliot, chair of Australia’s National COVID-19 Clinical Evidence Taskforce (starting 6:50m):

"I think one of the most important things is that people recognize prolonged symptoms, after the acute phase of CoVID, is a reality. It does occur and it's extremely important that health-care professionals—and, in fact, people generally in society—are aware of this and support people during this time. As we've seen in the past with chronic-fatigue syndromes and other post-infective fatigue and other syndromes, one of the most debilitating aspects can be when people are not believed."

For any major, media outlet in Australia, that is an extra-ordinary statement and I am quite encouraged by it.

 

(bolding mine)

Thanks @Colin for transcribing those encouraging lines from the audio (TV?) program.

 

Why indeed?

https://twitter.com/user/status/1309876241508585474


We know why.

 

As I suspected, some of the lowering numbers on the ZOE app are because many post-Covid patients have simply given up using it. In part because it still doesn't include many of the symptoms that have been reported for months, requiring manual input. And since no one knows whether this will be of any use, there is obviously little motivation to do this ritual every day, especially when little changes.

https://twitter.com/user/status/1309600143650455554


Half-assed efforts seldom give results. This is basically a tenth-of-an-ass. People will be motivated at first but without reason most will simply give up. The points made in the replies were all made early on. They were not taken into account. I don't know what they expected here, engaging with patients, requiring them to do work, but not listening to what people say. Ugh.

 

Arriving at the arbitrary 6 months threshold...

https://twitter.com/user/status/1309897930887790592

 

https://sports.yahoo.com/dr-fauci-says-covid-symptoms-110222378.html
https://twitter.com/user/status/1309925839690235906

https://twitter.com/user/status/1309926468156354560