Long COVID Comes Into the Light

[marmar]

Long COVID Comes Into the Light
We’re finally starting to see the truth about the vexing condition. It’s not what we thought.

BY JEFF WISE
MARCH 19, 20237:00 PM


(Slate) Even before 2020’s first horrific wave of COVID-19 deaths subsided, reports surfaced warning of a brutal second punch: Instead of recovering quickly after a mild infection, some people were suffering from symptoms that lingered or even intensified in the weeks and months that followed.

The condition came to be called long COVID. In those early days, everything about it was uncertain, from what symptoms it caused to how long they’d last and how hard they would hit. Some speculated that the effects might be effectively incurable, and that a large percentage of those infected with SARS-CoV-2 would wind up succumbing to this life-altering condition. “Months of illness could turn into years of disability,” warned the Atlantic’s Ed Yong. Given the bodies piling up in makeshift morgues, it seemed reasonable to assume the worst.

The first reports of how COVID seemed to fundamentally change people were scrabbled together from anecdotal accounts and preliminary studies. The picture they painted was frightening: As many as a third of all people who’d tested positive went on to report long COVID, according to a report published a year after the pandemic began. Few of these people had recovered much, and many were debilitated, unable to work or attend school. Newspapers and magazines ran articles that vividly described the complex litany of suffering endured by patients who weren’t getting any answers from their doctors. One early and influential story was by the British epidemiologist Paul Garner, who wrote in the medical journal BMJ about being flattened by a “roller coaster of ill health, extreme emotions, and utter exhaustion.” He described experiencing relentless, extreme fatigue, a “muggy head,” breathlessness, muscle pain, and a “weird sensation in the skin”—a parade of “constantly shifting, bizarre symptoms” that left him bedridden.

Long COVID is an unusual condition not only in its kaleidoscope of symptoms but also in the fact that it hadn’t been identified initially by doctors who encountered similar sets of symptoms in their patients. It was, rather, described by COVID patients themselves who, in the early months of the pandemic, found themselves mysteriously unable to get better. The complaints of early “long-haulers” were then picked up and amplified by activists, whose lobbying persuaded the government to allocate more than $1 billion in research funds. “Long COVID has a strong claim to be the first illness created through patients finding one another on Twitter,” researchers Felicity Callard and Elisa Perego wrote in the journal Social Science & Medicine. (They both suffered from long COVID themselves.) Patients desperately searching for answers were understandably dismayed to find little clarity from the medical community about their strange illness.

Now, three years later, the research is catching up to the anecdotal reports and the early evidence, and a clearer picture of long COVID has emerged. It turns out that, like COVID-19 itself, a lot of our early guesses about it turned out to be considerably wide of the mark. This time, fortunately, the surprises are mostly on the positive side. Long COVID is neither as common nor as severe as initially feared. As the U.S. government moves to end the country’s state of emergency, it’s another reassuring sign that, as President Biden put it during his State of the Union address, “COVID no longer controls our lives.” ..............(more)

https://slate.com/technology/2023/03/long-covid-symptoms-studies-research-variant.html

[NewHendoLib]

1. good article - I read it early this morning.

Interesting to read about the impact of social networking on sharing of symptoms!

Happy Monday!

[JCMach1]

2. While it may not be a 'bogey monster', articles like this do not help

In getting a very real disorder taken seriously.

I came damn close to dying with Covid-19 in September of 2020. I was extremely fortunate the pandemic had gone on long enough there were effective treatments during my hospitalization, so I survived.

Since then, I have experienced the following:

-on 02 for 5 months and still have breathing issues.
-ongoing issues with excessive heart rate
-ongoing issues fatigue
-ongoing issues with brain fog(actually showed up in my MRI to for another issue
-ongoing balance issues.
-developed Type 2 diabetes post-hospitalization, including neuropathy.
-developed hidradenitis suppurtiva while in hospital. Feel free to look it up if you don't want to eat the rest of the day.

I am sure I probably left out a few other small things. So yeah, I am not very appreciative of the author's tone here.

[Quakerfriend]

5. Thank you for sharing your story.

And, so glad you made it through.

I agree with you entirely.

I think that, much like with chronic fatigue syndrome, fibromyalgia and Lyme disease, we will see long covid minimized by the medical community for the foreseeable future. Unfortunately, the wide array of symptoms make it too easy for insurers to deny coverage.

We may have to look to other countries such as Italy that are already taking long covid more seriously-
by setting up long-term care & rehab for long covid patients.

[Pathwalker]

13. Been there for months. Chronic Tachycardia is no joke. I'm going for

a cardiac chemical stress test and ultrasound at the hospital tomorrow, and my anxiety over that is not helping. My cardiologist doesn't think it's covid related, so this to rule out something - anything else.
And that's just one of the long haul symptoms I've got.
Best of luck to you!

[LAS14]

15. I didn't finish this article with a diminished appreciation...

.. of the effects of long COVID. I took away that it's real. It's just not as common as we first thought

[womanofthehills]

16. Agree - you might want to join the Listen study thru Kindred

Dr Akiko Iwasaki of Yale plus Mt Sinai keep recutting people for their Listen study. You might be able to get extensive blood work. One thing most Long Covid patients have in common is exhausted T cells like people with cancer or aids. Their CD 4 cells are not working correctly either plus lots of other immune system abnormalities.

Link to tweet

?s=46&t=YZgyyp4w_z7vW3neKxa6cQ

Link to tweet

?s=46&t=YZgyyp4w_z7vW3neKxa6cQ

Link to tweet

?s=46&t=YZgyyp4w_z7vW3neKxa6cQ

[brewens]

3. I don't think a lot of the severe post COVID medical problems are included in

"long COVID". Someone with severely damaged lungs from COVID pneumonia for example. not much of a mystery there. Same with brain damage and other conditions that left many people disabled.

[riversedge]

4. "Months of illness could turn into years of disability,"

YUP.

[Sympthsical]

6. And this is why we don't conduct medical research via social media

Call it the WebMD effect, where the lightest sniffle means you probably definitely have terminal cancer according to the internet.

A lot of long COVID has often felt like a social media, "Yes, me too!" bit of oddness similar to how mental health status has been earning a kind of cachet in some corners of the internet. It becomes strangely socially popular/acceptable/desirable to have something wrong. And just ask many of these people - they self-diagnosed it all by themselves, so you know it's scientific. There is an increasingly bizarre trend with some pockets of young people where they just kind of decide they're autistic one day - no doctors necessary!

Blend that sort of impulse with Twitter and a media eager for the most alarming stories, and the idea that Long COVID was "Up to a third of people!" turned into one of those stories no one was particularly interested in checking for accuracy or further investigation. And as with any trend, there are plenty of people who want to hop on board to be a part of things. "Yes, I have fatigue, too!" Unmentioned: caffeine, poor sleeping habits, poor diet, lack of exercise, prolonged exposure to phone and computer screens, etc. etc. etc. People glued to screens and social media at all hours of the day are tired? Knock me over with a feather. Shit, I just spent the last three days in a bunker doing midterms with broken sleep, plenty of caffeine, and being plopped in a chair for hours on end. Not being as young as I used to be, it's going to take me the better part of a week to not be dragging absolute ass. Mysteriously.

With social media, we can talk ourselves into believing anything, and mass hysteria - or in this case, mass hypochondria - is easier to spread. There was also social pressure to acknowledge that all this was absolutely, 100% true, or else you were a "denier" - and who wants to be one of those?

It will be interesting now that scientists are gathering data and speaking on this whether or not the actual science and not self-reporting or "Heard it on Twitter" research will be acknowledged - or if people will insist, "Nuh uh!" (I read about the Nuh Uh study in the Journal of Medicine. Super peer reviewed).

"In both cases, nearly as many controls suffered the symptom as COVID patients did."

You wouldn't know it from social media - or regular media for that matter. Seems like psychosomatic symptoms became a trend. Well done, everyone.

Scientific literacy is not as much a thing in this country as one would hope it would be.

(Disclaimer: Long COVID does exist and requires more research and understanding so that those who do actually have it will have pathways of treatment made available to them. However it is a thing for a very, very small percentage of people. My remarks are geared towards the hysteria that it was much more widely spread and ubiquitous based on media articles and dissemination of panic and self-diagnosis across social media)

[Tomconroy]

7. It wasn't all the fault of the internet. With a billion dollars

In grant money available from the government all sorts of hack academics came out with junk science studies claiming that 20, 30 or 50 percent of those who caught covid would then suffer from some undefined term called 'long covid'.
And of course news stories about the studies would immediately get posted on DU. It was all a disservice to those few people who suffered serious after effects of covid. Disgraceful.

[Sympthsical]

8. There was that, too

Our grant system needs a serious overhaul. Too much bullshit gets promoted because people just want the dollars.

For some reason, I never knew that "One third!" nugget came from a self-reporting survey. Jebus Crust on a Cookie. That self-selection surveys are unreliable trash is like the first unit in Statistics 101.

Just marvel at this paragraph:

Other work suggested that long COVID could affect a much larger slice of the population. In one influential study from early 2021, researchers at the University of Washington sent a questionnaire to 234 COVID patients between three and nine months after they fell ill. Of the 177 who responded, about a third reported ongoing symptoms like fatigue, brain fog, and loss of smell. A subsequent Brookings Institution report used this statistic to estimate that 31 million working-age Americans “may have experienced, or be experiencing, lingering COVID-19 symptoms.”

I am in complete awe that "professionals" managed that one. Take a survey with a small sample size and serious issues with self-selection bias, extrapolate it to the general population, then scare the hell out of everyone.

And people wonder why my default setting is highly skeptical and critical until hard evidence and data are provided.

This was scientific and media malpractice.

[wnylib]

10. I wouldn't write off the long term effects of covid

as merely socially reported psychosomatic cases.

Several viruses have long term effects, sometimes decades long. Childhood polio victims experience after effects in adulthood and in senior years. Shingles is a long term after effect of chicken pox. Herpes viruses have repeated outbreaks.

It is, unfortunately, a common feature of viral infections. I developed a chronic, painful, crippling muscle inflammation after I was infected repeatedly at work with viral bronchitis. The condition that I developed was polymyalgia rheumatic. I had never heard of it until I developed it. It follows viral infections, mostly in seniors age 60 and over, women more than men, mostly people with northern European ancestry. The PA that "treated" me at the time misdiagnosed it as mild arthritis because that's what X-rays showed in my hips. But my primary symptoms were on my ARMS and back initially, although I did later develop severe hip pain. The PA discounted my symptoms and said that I was overreacting to mild arthritis.

Fortunately, she took time off and a new PA immediately recognized polymyalgia rheumatica, not visible on X-rays, but confirmed by lab tests for inflammation and relieved by Prednisone (the only medication that works for PMR).

Even with Prednisone and exercises from a rheumatologist, it took TWO YEARS for me to fully recover.

Viral infections can have very long term, physically real after effects in some people.

[JCMach1]

11. You analysis works way better for Covid-19 misinformation itself

It's extremely deflating when those of us with genuine issues have to deal those who already don't understand the disease.

We are the equivalent of that first 2-3 years in the AIDS pandemic where misinformation, bad studies, and misinformation were the norm. It took a decade before the science caught up with the illness.

Those of us who have issues have to deal with nasty naysayers, the Covid misinformed, etc. Every damn day it seems. It doesn't help that some MSM is piling on to this. Let the science play out, it will take awhile.

Meanwhile, it is very real and can be debilitating.

[womanofthehills]

17. Lots of good info on Twitter about studies being conducted around the world

And in some of our top universities. Facebook, Reddit, Twitter all have many Long Covid forums where people are exchanging info because the average MD has no idea what they are dealing with. People need to keep up with research coming out of Yale & Mt Sinai - thru Hugo Health and Kindred they can join the Long Covid study.

Link to tweet

?s=46&t=YZgyyp4w_z7vW3neKxa6cQ

LINK to join study:

https://medicine.yale.edu/ycci/listen-study/

[womanofthehills]

18. Prof Iwasaki video

Yale Prof Akiko Iwasaki - “probably 65 million people globally have Long Covid”

Link to tweet

?s=46&t=YZgyyp4w_z7vW3neKxa6cQ

[dembotoz]

9. a virus, not just covid, can do long and lasting damage.

before covid i got a nasty case of the flu that was never quite bad enough to go to the doctor but did not feel right.
What ever it was, it triggered afib.
Did it cause afib? smoking gun cause and effect type thing? I dunno.
Same thing happened to an acquaintance of mine....afib but now dead.

perhaps it is just that when you get a bad virus, your system gets weakened and the nasty stuff that was always hidden ready to kill you comes out to play.

Coincidence? as they say on NCIS....Gibbs rule...No such thing as coincidence

[Johnny2X2X]

12. Long flu is a thing too

It's not as common as long Covid, but long flu has awful symptoms for a lot of people too. Sometimes for years or longer.

[LAS14]

14. Thanks! I've been looking for an article like this. DU is great!! nt