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

Status
Not open for further replies.
Via @DxRevisionWatch
Dolphin said:

While I remember, I thought I would highlight this tweet by one of the co-authors:
Click to expand...

This is a preprint presumably of the paper in question:
Why the Patient-Made Term 'Long Covid' is needed
Elisa Perego1, Felicity Callard 2, Laurie Stras 3, Barbara Melville-Jóhannesson4,
Rachel Pope5, Nisreen A. Alwan 6-8
1Institute of Archaeology, University College London, London, WC1H 0PY, UK
2School of Geographical and Earth Sciences, University of Glasgow, Glasgow, G12 8QQ, UK
3School of Music, Humanities & Media, University of Huddersfield, Huddersfield, West Yorkshire, HD1 3DH, UK
4Creative Informatics, University of Edinburgh, Edinburgh, EH8 9BT, UK
5Archaeology, Classics and Egyptology, University of Liverpool, Liverpool, Lancashire, L69 7WZ, UK
6Faculty of Medicine, University of Southampton, Southampton, Hampshire, SO16 6YD, UK
7NIHR Southampton Biomedical Research Centre, Southampton University Hospitals NHS Trust, Southampton, Hampshire, SO16
6YD, UK
8National Institute for Health Research Applied Research Collaboration Wessex, University of Southampton, Southampton,
Hampshire, SO16 6YD, UK
Click to expand...
https://d212y8ha88k086.cloudfront.n...7e6-198188dab8b3_16307_-_felicity_callard.pdf

While similarities between some ‘Long Covid’ symptoms and symptoms from conditions such as Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and dysautonomia need to be investigated47,48, there is a risk of prematurely framing studies of ‘Long Covid’ through other diseases. This might downplay emerging phenomena specifically linked to COVID-19 – such as the range of SARS-CoV-2 action via ACE2 receptors widespread in the body, and the temporally and spatially complex immune response to the virus – thereby missing thresholds for early intervention25,45.
Click to expand...

Anthony Fauci has stated that a COVID-19 ‘post-viral syndrome’ is ‘strikingly similar to myalgic encephalomyelitis/chronic fatigue syndrome’61. While we acknowledge the importance of investigating comparisons with other diagnostic entities, we argue however against enfolding ‘Long Covid’ within other diagnoses. We need a label distinct from other phenomena related to earlier viral and other exposures (e.g. ME/ CFS).
Click to expand...

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

Those who have been struggling for months to recover from the disease face more than just medical uncertainty. Many are dealing with job loss or lack of accommodations from employers who don’t understand their prognosis.
Click to expand...
Alexa is part of a small but growing coterie of COVID-19 patients who call themselves long-haulers—people who have remained sick for months and months, plagued by an onslaught of varied symptoms. As they navigate doctors’ appointments and mounting medical bills, many long-haulers are simultaneously losing months of pay or fighting for alternate work arrangements so they can stay afloat financially.
Click to expand...
Many people I spoke to encountered some measure of medical gaslighting, when doctors minimized or dismissed their physiological symptoms. (One hospital that has taken up their cause is Mount Sinai in New York City, which introduced a program specifically focused on the care of long-haulers.) Countless patients who became ill in March and April were unable to get tested for the coronavirus and never got a positive test result, which further complicated their access to care; others got conflicting test results or false negatives when they finally did get tested.
Click to expand...
“I’m seeing people who worked salaried positions, took a certain amount of paid time off, and then are struggling to get more paid time off from their employers,” says Fiona Lowenstein, the 26-year-old founder of Body Politic, who started the Slack support group after she got sick with COVID-19. “Some of these people reached out to me in April and May saying, ‘Do you have any articles on the existence of long-haul COVID that I could send to my employer? Because they don’t believe that it’s taking more than two weeks for me to get over this since I wasn’t hospitalized.'” For gig workers like Lowenstein, paid time off wasn’t even an option.
Click to expand...
As weeks of illness stretch into months, long-haulers have lost their jobs or had no option but to stop working, leaving them in a precarious financial state. Montano hasn’t been able to work at all since she was let go. “I ended up having to move into my mom’s apartment, so that helped alleviate having to pay rent,” she says. “But I’ve pretty much almost depleted my savings at this point.”
Click to expand...
Angela Shearer, a healthcare worker, lost her job of 14 years after she got sick. “My employer was supportive for a while,” she says. “But in July, they decided they had to fill my position.” Shearer, 47, was able to secure short-term disability, but her coverage has since run out and she’s now seeking long-term disability. “I feel devastated by what I lost because I worked really hard for a really long time for the position that I’m in,” she says. “And yet, I’m still one of the lucky ones because I had been there for a while, and I still can get some type of disability [benefits].”
Click to expand...
In the meantime, she has gotten virtually no financial support, being unable to access unemployment benefits or short-term disability, and she isn’t sure how much longer she’ll be able to pay rent. “I don’t think employers understand the long-term effects,” Taylor says. “There have been too many of us in the COVID support groups losing benefits, and some have been pressured to return to work when unable to function normally.”
Click to expand...
But muh "status" and "secondary gains". :facepalm:
 
Dolphin said:

While I remember, I thought I would highlight this tweet by one of the co-authors:
Click to expand...


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 :cautious:

*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:

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

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.
Click to expand...

Dr Short said without long-term studies, it's difficult to know how concerned we should be about COVID-19 in contrast to other existing viral infections.

"The question is: If you took a virus of similar severity and similar duration, would you also see long-term complications?" she said.

"It's very possible that we're just seeing this with SARS-COV-2 because of the sheer numbers of people being infected."
Click to expand...
 
Art Vandelay said:
Not a terrible article:
Click to expand...

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.
 
Dr Short said without long-term studies, it's difficult to know how concerned we should be about COVID-19 in contrast to other existing viral infections.

"The question is: If you took a virus of similar severity and similar duration, would you also see long-term complications?" she said.

"It's very possible that we're just seeing this with SARS-COV-2 because of the sheer numbers of people being infected."
Click to expand...

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.

 
Kitty said:
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.
Click to expand...

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.
 
Invisible Woman said:
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.
Click to expand...
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.
 
Last edited:
Kalliope said:
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.
Click to expand...

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.




 
Last edited:
Colin said:
... 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."
Click to expand...

(bolding mine)

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



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.
 
Status
Not open for further replies.
Back
Top Bottom