Long Covid in the media and social media 2022

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CDC: Majority of Adults with Long COVID-19 Report Trouble Performing Daily Activities
More than 80% of adults with long COVID say their long-term symptoms have reduced their ability to carry out daily activities.

The survey’s results mean that over 18 million adult Americans are currently experiencing symptoms of long COVID and 15 million have problems performing daily activities because of it.
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https://www.usnews.com/news/health-...19-report-trouble-performing-daily-activities

https://www.cdc.gov/nchs/covid19/pulse/long-covid.htm
 
Here's a slightly longer news article about that CDC survey of Long Covid patients.

https://www.axios.com/2022/10/06/long-covid-cdc-data-disabling

Mentions "chronic fatigue syndrome" (not ME/CFS) and then uses "chronic fatigue" just a few lines later :banghead:

An excerpt:
Of the nearly 24 million adults in the U.S. who currently have long COVID, more than 80% are having some trouble carrying out daily activities, according to CDC data released Wednesday.

Why it matters: Nearly three years into a pandemic that has left millions newly disabled, medical researchers continue to search for an effective treatment.

The big picture: Long COVID symptoms can include shortness of breath, cognitive difficulties and symptoms that worsen even with minimal physical or mental effort — a primary indicator of chronic fatigue syndrome.
  • The pandemic sharpened the focus on the once largely dismissed area of chronic fatigue in health care, but misunderstandings and stigma persist.
  • Up to 4 million people are estimated to be out of work because of long COVID symptoms, according to a Brookings Institute report in August.
  • While long COVID is classified as a disability, qualifying for Social Security benefits requires proof that the condition has or will last a year, even though there's no test to diagnose long COVID, per CDC.
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ahimsa said:
Mentions "chronic fatigue syndrome" (not ME/CFS) and then uses "chronic fatigue" just a few lines later
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The first big picture sentence is pretty decent: they got PEM in there - yay. I might be inclined to give them a pass on the later point, ie allowing that chronic-fatigue-the-symptom, whether from ME or lupus, Sjogrens, MS or whatever, has been largely misunderstood and mismanaged.
 
SNT Gatchaman said:
The first big picture sentence is pretty decent: they got PEM in there - yay. I might be inclined to give them a pass on the later point, ie allowing that chronic-fatigue-the-symptom, whether from ME or lupus, Sjogrens, MS or whatever, has been largely misunderstood and mismanaged.
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They might do a correction/edit if someone pointed it out to explain the issue. I think a lot of people just write "chronic fatigue" unthinkingly and are totally happy to correct it.
 
SNT Gatchaman said:
A/Prof in computational statistics at Toronto.

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It's annoying how this fact is so rarely pointed out. Most of the risks people insure themselves against, some of them at a cost of hundreds or even thousands per year, are far less likely than the risk of Long Covid, which people technically pay nothing to insure themselves against.

Risk of flooding? Fire? Accidents? Most of those risks are fractions with several significant zeros, very low %. An absolute risk of >1% is the kind of risk that you can't insure against, too risky for an insurer / the policy would be too expensive.

But the possibility of lifelong disability, at about 1%, is fully uninsured, without any protection, in fact with basically negative protections, as the people who manage this risk are actually doing the most they can to maximize it, unwittingly/incompetently.

And the public doesn't know, because the people who manage this risk are not voicing it, are doing everything they can to make it not just more prevalent but far worse off for those who get it.

Then again, if people knew just how bad modern medicine still is at most things, they would be far more careful in everyday life, would do much more to avoid accidents and disease. Instead the opposite seems to happen, with the shortcomings of medicine being mostly an untold secret, most people are generally careless about their health, thinking that if the worst comes, the magic of modern healthcare will handle it. No informed consent here.
 
https://www.cepr.net/report/understanding-and-addressing-long-covid/

I just found this by accident. Can’t see if anyone else has posted it. Quick skim shows they refer to ME/CFS and suggest a range of risk minimisation and resilience strategies. Nothing earth shattering but seems to actually look at what needs to be done.

i know nothing about cepr.net and google tells me it’s cepr.org so…
 
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SNT Gatchaman said:
Unprecedented numbers of shows being cancelled. Presumably a mix of long Covid, acute Covid and +/-post-Covid-augmented other infections.

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Some fan groups have been making and sharing "covid bingo cards" on social media, documenting confirmed covid cases after shows, in order to encourage people to get tested, isolate, wear masks etc. Here's an example from July (Krakow, Poland).


(P.S. There are plenty of alternative speculations and conspiracy theories regarding this as well, the fact that so many shows are suddenly being cancelled on the same day. Some believe it could have something to do with the music company that owns the record labels in question, ongoing court cases and certain very serious allegations that have been raised against them recently. See for example Rebecca Ferguson's story on TikTok.)
 
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Wow, that was pretty good coverage. Dr. Li said that Long Covid is absolutely a real condition:
News anchor Chris Cuomo: "First, the simple reality. Is there any chance that long Covid is just some mushy excuse for people wanting to say that they have bad things and phantom illnesses?"
Doctor William Li: "Absolutely not. I mean, Covid is a new human disease."
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He emphasizes that Covid causes unambiguously physical issues, such as diabetes in children and teens, heart problems and strokes in middle age, and Alzheimer's Disease in older people.

While he doesn't mention ME, he says we need to research treatments, and he doesn't mince words about how serious long Covid is:
Dr. Li: "What's happening now is that doctors are getting into the game, and we now have to confront the fact that there are a certain percentage, less than half, but certainly not rare, people that have a spectrum of conditions, and I actually take care of people that are seriously debilitated. Their lives--they say that their lives are actually ruined. And so, for me, as a researcher, I'm interested in finding out what is going on underneath, how can we predict who's actually at risk for developing it, and of course, what do we do to try to help people overcome the suffering?
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Mij said:
A doctor’s humbling journey treating long Covid
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A nice read
Unfortunately way too many people with this are not being believed about their illness. And this has happened before, with long Lyme, and CFS, and fibromyalgia. And I will tell you, as a medical insider, that I used to think that those weren’t real. I was taught in medical school that they weren’t real. I was just with some medical students last week, and I talked to them about a patient of mine who had long Lyme. And they said we were taught that that’s not real — and these are current med students. This is something the ivory tower medical profession needs to realize — long Covid is going to push us to get outside of our comfort zone with illnesses that we can’t define. Because we don’t like it when we can’t understand something, but we have to get over that.
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Long Lyme? Amy Proal used that re-branding, I think. To me it's like saying Long Syphilis. It just isn't right.
 
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I found the passage on how he ended up on social media interesting. I also did a 180 from a very anti position to see the benefits of rapid information dissemination (and all the risks needless to say).

So, I’m 58 years old. You know, an old doctor. And if you had told me two years ago that I was going on social media and Twitter, I would have said, “You’re crazy. There’s no way.” But two things happened. One was that at the beginning of the pandemic, a lot of doctors around the world were writing me and saying, there’s so much ICU delirium, we’ve got to study this. And they said if you get on Twitter, we can find the patients faster. I said fine. I’ll open a Twitter account and we will advertise for the study on Covid delirium. We enrolled 2,100 patients in two weeks. And so I decided to stay on Twitter to share and validate people’s stories and spread good science about long Covid and brain dysfunction and PICS and such.

And then about six months ago, people in the office said you need to get on TikTok and I said, “No, I’m drawing the line.” But there’s this crazy set of misinformation being spread on TikTok, misinformation so egregious that I thought, “You know what, I’m just going to try five videos and see what happens.” So all I do is I sit in my office, flip my phone around, and give a two to three minute message on some topic, and I post it. I don’t spend any time on it, there’s no production. It’s super old school. But if it’s helping people, then I’ll keep doing it.
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There's been some push-back against the ignorant remarks from Australia's CMO (discussed here):

Chief Medical Officer Paul Kelly downplayed long COVID while justifying end of isolation requirements, medical specialist says

A leading medical specialist and long COVID patients say the chief medical officer (CMO) downplayed the state of long COVID in Australia while justifying the end of national isolation requirements.

Steven Faux, who heads up a long COVID clinic at a Sydney hospital, called the comments "unusual" and akin to "pulling the sheet over your head".

During a press conference last month, when the October 14 mandatory isolation end date was announced, Paul Kelly said health authorities were still assessing the extent of long COVID in Australia.

"We're not seeing a major picture of long COVID," he said.

"For the majority of Australians, we were not exposed to COVID before we had at least two vaccines.

"We know that the major risk factors for long COVID are having had infection before vaccination, being unvaccinated, having severe illness and having other types of COVID that were not Omicron."

Professor Faux, who co-directs the long COVID clinic at St Vincent's Hospital in Sydney, said Professor Kelly's comments did not accurately represent the patients who were presenting at his practice.

"Mostly we're seeing people who got [COVID-19] in December and that's the Omicron wave … and the majority we are seeing are vaccinated," Professor Faux said.
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