Long Covid in the media and social media 2022

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STAT Biden's long Covid plan is a good start. But it needs to go further
by Ryan Prior and Kimberley Knackstedt

quotes:

Advocates and patients decry a lack of scientific progress and social recognition for the chronic disease that is upending their lives.

...

Viewing long Covid through a disability lens ensures not only that this condition is taken seriously as a chronic illness, but that rights afforded to people with disabilities are intentionally intertwined through every policy decision. This new generation of chronically ill people fits into a larger big-tent coalition that can fight for them in the broader work for equity for disabled people.

Look to similar post-infectious diseases. Valuable lessons can be learned from post-infectious diseases that long Covid often resembles: myalgic encephalomyelitis/chronic fatigue syndrome, postural orthostatic tachycardia syndrome, or mast cell activation syndrome. Although these disorders have been widely documented across many infections, research about them has been poorly funded. The administration’s plan correctly highlights these diseases. Intentionally pulling from clinical experts and the scientific literature could offer an opportunity to solve the mystery of these conditions for millions disabled by Covid and non-Covid infections.
 
Article in The Atlantic from August 4. Two weeks old, but I haven't seen it mentioned here.
Willed Helplessness Is the American Condition: "To wrap your mind around the reality of long COVID and its randomness is terrifying."
Discusses politics somewhat, but also covers research. Mentions ME/CFS:
Meghan O'Rourke in The Atlantic said:
The NIH needs to lead with more urgency and innovation than it has to date, listening to the expertise of researchers in infection-associated illness in fields such as myalgic encephalomyelitis/chronic fatigue syndrome.
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Cites David Putrino and resaerchers saying that long Covid can be a progressive illness, which is a claim I haven't seen in the news before.
 
The advice, which hasn't been updated since December 2021, at least comes with a warning: 'Following this, activity and exercise advice is at your own risk. You are agreeing to undertake these activities voluntarily and as such assume all risk of injury to yourself."
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If it doesn't work, and especially if it hurts you, then it is your fault.
 
rvallee said:
It's truly one of the most bizarre obsessions in modern life and it seems to basically rule all healthcare, the need to minimize real risks while obsessing even more on completely imaginary threats. It effectively places imaginary fear-causing-illness, not a thing, as far more important than actual ruinous chronic illness. Incredibly misplaced priorities based on belief systems. What an awful mess.
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Following their weird logic, wouldn’t the fact that they are warning against fear because it makes you ill also be making people ill, because people will start to fear having illnesses caused by fear?

If I were to take them seriously, that just worrying about something will actually make it happen to you body, and could have consequences like being housebound for life, that all your fears will become true simply because you fear them, that’s terrifying. They are actually the ones spreading fear. Fear of simple natural things like thinking and talking.
 
Follow-up on the spate of incorrectly labelled "misinformation" tweets and account suspensions on Twitter.

Jaybee00 said:
Taylor Lorenz retweeted Jaime S tweet posted above.
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Jaybee00 said:
Taylor Lorenz is a media/tech reporter for the Washington Post. She tends to get embroiled in a lot of controversies.
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Perhaps with some success on this occasion, although Dr Jalali also emailed the Twitter CEO.

 
Long Covid: Mum puts hopes in experimental treatment
An Aberdeen mother-of-three whose life has been put on hold by Long Covid will travel to Germany this week for experimental treatment.

Kate Stott says her world has been transformed since she contracted the virus more than two years ago.

She told BBC Scotland her continuing symptoms were debilitating.

But Mrs Stott has now agreed to therapy targeting tiny blood clots which some doctors believe could be a core cause of the condition.
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'You feel sedated'
Mrs Stott said: "That feeling you get before you get an operation, and you are put under anaesthetic and they say count down from ten - that is what living with Long Covid fatigue is like.

"You just feel like you are sedated.

"I feel like I have got concussion and that sounds bizarre to anybody else who hasn't experienced it.

"But I can do something as little as taking the washing out of the washing machine and I feel like I have hit my head and I am sick and dizzy and have to immediately sit down again."
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On Tuesday she will head to Europe for treatment.

Mrs Stott said: "When I get to Germany I will have my blood taken. It will be tested initially for microclots and hyperactive platelets. I will then have a follow-up consultation with the doctor there.

"What I hope to come home with is prescription drugs that I will be able to take here and speak to my GP and specialist here about and try this trial.

"I just want to try to relieve some of these symptoms. I am not expecting a magic pill."

Microclots are emerging as a potential key to unlocking Long Covid treatment.
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Dr David Strain, from the NHS Long Covid Taskforce, said: "That could account for why some people start the day feeling great because the body's had time to replenish itself, but very, very quickly, they become exhausted."

Research has also shown the brain can shrink by between 0.2% and 2% even after mild infection so unrepaired damage is a potential cause of symptoms like brain fog.
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(quite a long article)
full article here:
https://www.bbc.co.uk/news/uk-scotland-north-east-orkney-shetland-62608386
 
Mrs Scott said:
That feeling you get before you get an operation, and you are put under anaesthetic and they say count down from ten - that is what living with Long Covid fatigue is like.
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Wow, I've never heard anyone describe it like that, but it matches my experience markedly. I sometimes describe my experience of physical PEM as feeling "dopey". Very tired, can't concentrate for squat, but it's not always unpleasant. And profound mental fatigue makes me feel loopy, like how I imagine being drunk would feel--though I've never actually been drunk.
 
CNN interview with Dr Topol:
Lingering #coronavirus symptoms known as #LongCovid may be much more prevalent than many of us realize. Dr.
@EricTopol
shares new study results with us & also discusses the new #CovidVaccine booster shot & the greater benefits of a future nasal spray #CovidVaccine
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And an evening segment on MSNBC by the host, seen several kudos on this one:
"There is a growing sense, fuelled by both the administration & the media, that we have vaccines, we have Paxlovid, so the crisis is over. But Long Covid doesn't fit that convenient narrative." My commentary tonight on #longcovid & the millions suffering:
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> Studying Long COVID Might Help Others With Post-Viral Fatigue Ailments


i have come to nearly despise this type of sound bite. can't put finger on it, but i think it's the arrow of help.

never mind the usual omissions about severity and progressiveness and persecution and sociopolitical context, ...

... polished professional casual dismissiveness, subtle insinuations, absolute wrong facts [like i ahve ben sick since '60s-'70s and they outright deny that's poissible what am i chopped liver?] and the impeccable self-description by authorities as heroes ... all dripping noxiously from every orifice in such articles as if addressing m.e. honestly or at all is like a dog trying to avoid being washed.


instead, what has taken me from "these articles are sometimes favorable even if they are watered down to distilled water"...

... to "this gets under my skin and i can't quite put my finger on it", among the NEW omissions and absolutely wrong facts, is...

... the UNIDIRECTIONAL arrow of help. t's not as if pwme can't help just a BIT from a century of persecution, because, you know, they are getting awesome collateral help and they need graded gratitude therapy to realize that.
 
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Long COVID Mimics Other Post-Viral Conditions
By Miriam E. Tucker

Aug. 24, 2022 – When Jaime Seltzer first heard about a new virus that was spreading globally early in 2020, she was on full alert. As an advocate for the post-viral condition known as myalgic encephalomyelitis/chronic fatigue syndrome, or ME/CFS, she worried about a new wave of people having long-term disabilities.

“The hair on my arms stood on end,” says Seltzer, director of scientific and medical outreach at the advocacy group MEAction and a consultant researcher at Stanford University.

If the percentage of people with COVID-19 who go on to have long-term symptoms “similar to what has been seen for other pathogens, then we’re looking at a mass disabling event,” Seltzer, who has had ME/CFS herself, says she wondered.

Sure enough, later in 2020, reports began emerging about people with extreme fatigue, post-exertion crashes, brain fog, unrefreshing sleep, and dizziness when standing up months after a bout with the then-new viral illness. Those same symptoms had been designated as “core criteria” of ME/CFS by the National Academy of Medicine in a 2015 report.

Now, advocates like Seltzer are hoping the research and medical communities will give ME/CFS and other post-viral illnesses the same attention they have increasingly focused on long COVID.

The emergence of long COVID was no surprise to researchers who study ME/CFS, because the same set of symptoms has arisen after many other viruses.

"This for all the world looks like ME/CFS. We think they are frighteningly similar, if not identical," says David M. Systrom, MD, a pulmonary and critical care medicine specialist at Brigham and Women's Hospital in Boston, who studies people with both diagnoses.

The actual numbers are hard to determine, since many people who meet ME/CFS criteria aren’t formally diagnosed. But a combined analysis of data from several studies published in March found that about 1 in 3 people had fatigue and about 1 in 5 reported having a hard time with thinking and memory 12 or more weeks after they had COVID-19.

According to some estimates, about half of people with long COVID will meet the criteria for ME/CFS, whether they’re given that specific diagnosis or not.
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https://www.webmd.com/lung/news/20220824/long-covid-mimics-other-post-viral-conditions
 
Long covid is a (very small) part of the current election campaign in Sweden. Here are four items published by the public service radio company Sveriges Radio yesterday:

Julia fick postcovid – slussades runt i vården
https://sverigesradio.se/story/julia-slussades-runt-i-varden
Auto-translate said:
Contents

Julia got postcovid - sent through from health centre to health centre

Veronica got help at a postcovid clinic

How politicians want to end inequality in healthcare

Varying care for postcovid
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New York Times
Long Covid Sufferers Have Waited Too Long for Help
When the influenza pandemic of 1918-19 ended, misery continued.

Many who survived became enervated and depressed. They developed tremors and nervous complications. Similar waves of illness had followed the 1889 pandemic, with one report noting thousands “in debt and unable to work” and another describing people left “pale, listless and full of fears.”

The scientists Oliver Sacks and Joel Vilensky warned in 2005 that a future pandemic could bring waves of illness in its aftermath, noting “a recurring association, since the time of Hippocrates, between influenza epidemics and encephalitis-like diseases” in their wakes.

Then came the Covid-19 pandemic, the worst viral outbreak in a century, and when sufferers complained of serious symptoms that came after they had recovered from their initial illness, they were often told it was all in their head or unrelated to their earlier infection.

It wasn’t until the end of the first year of the pandemic that Congress provided $1.2 billion for the National Institutes of Health, which led to a long Covid research initiative called Recover, in February 2021. A year and a half later, there are few treatments and lengthy delays to get into the small number of long Covid clinics. Frontline medical workers don’t have the clinical guidelines they need, and some are still dismissive about the condition.

Long Covid sufferers who caught the virus early have entered their third year with the condition. Many told me they have lost not just their health but also their jobs and health insurance. They’re running out of savings, treatment options and hope.
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Treatments, too, would differ. Some long Covid patients crash after even limited physical or cognitive effort. Staying within their limits, or pacing, is crucial. However, many told me their primary care physicians would tell them to condition themselves through increased activity. That’s sensible advice for others with mild deconditioning due to lingering symptoms, but it made them feel worse and resist the advice. Some told me that their physicians then saw them as stubborn and lazy.
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Then there’s myalgic encephalomyelitis/chronic fatigue syndrome, an ailment that can leave previously healthy people bedbound and severely limit their physical or cognitive abilities. As many as three-quarters of M.E./C.F.S. patients trace their illness to an infection. But these patients have long been battling neglect and suspicion, with minuscule research devoted to the condition.

M.E./C.F.S. patients were among the first people to raise alarms about long Covid in the spring of 2020, quickly noticing that a subset of long Covid patients seemed to suffer from a very similar ailment. Since then, the number of studies showing connections between Covid and a variety of chronic disorders and later medical problems has grown, as well as the recognition that the Covid virus is not the only virus to do so.
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https://www.nytimes.com/2022/08/25/opinion/long-covid-pandemic.html
 
From the article: "Looks like Long COVID victims were intentionally overlooked."

It seems governments go to action, or in this case inaction, on publicizing the existence of Long COVID has helped lead to this chronic, debilitating health condition. Perhaps if information about this phenomenon had been availabe earlier, more people might have taken precautions. An opportunity missed. Along with the decades long neglect of research into post infection chronic diseases, and disability.
 
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