Long Covid in the media and social media 2022

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From the Netherlands:

NL Times Healthcare employees with long Covid can be dismissed

quote:

Many healthcare workers who have been battling long Covid since the early days of the pandemic are fearing for their futures as the end of the two-year protection against their dismissal looms on the horizon, according to AD. Nearly 1,000 healthcare employees have been suffering from long Covid complaints for almost two years now.

Almost half of the 4,500 healthcare workers with long Covid have been ill for over a year and have had to lose 30 percent of their salaries as a result of not being able to work. Healthcare workers with long Covid say this has added to the stress of everyday life with the chronic illness.

"When the coronavirus pandemic broke out, we received so many fruit baskets, flowers and support, that was great," a 50-year-old nurse who wished to be known as Tamara told AD. "And now I'm discarded. I have too little air, too little energy to lift people out of bed, to wash and to care for them."
 
Not 100% sure about this guy, he got many things wrong at first, but seems to be learning. It's known that his son had(still has?) LC, so good chances it's first-hand experience with the consequences.

But he is influential, former White House adviser and ex-administrator for Medicaid, the medical insurance program for poor people, and Medicare, same but for everyone 65+.

Name-drops ME a few times, seems to at least get the impact of misguided advice.

 
Moved post

https://www.reuters.com/business/he...zers-paxlovid-treating-long-covid-2022-04-18/

The case for testing Pfizer's Paxlovid for treating long COVID
CHICAGO, April 18 (Reuters) - Reports of two patients who found relief from long COVID after taking Pfizer Inc's (PFE.N) antiviral Paxlovid, including a researcher who tested it on herself, provide intriguing evidence for clinical trials to help those suffering from the debilitating condition, experts and advocates say.

The researcher said her chronic fatigue symptoms, which "felt like a truck hit me," are gone after taking the two-drug oral therapy.
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Morning Consult: Most Long COVID Patients Are Seeking Help From Their Primary Care Doctor

quotes:

.. some clinicians say that instead of standing up more specialty clinics, those with newfound expertise on long COVID should be disseminating what they know more broadly, particularly in primary care. That’s because long COVID affects up to 23 million Americans — an estimated 10% to 30% of those who get COVID-19 — and the sheer magnitude of the disease means the number of patients will continue to outstrip availability at these clinics.

“It’s something that physicians are going to have to become comfortable with,” said Dr. Daniel Karel, a primary care doctor at George Washington University’s long COVID clinic and an assistant professor in medicine in the Division of General Internal Medicine. “It is completely unsustainable to have long COVID clinics exist the way they do today.”

...

“We hope everything we learn from patients with long COVID will help patients who have been sick for decades,” said Dr. Lucinda Bateman, who runs a nonprofit specialty clinic and research center in Salt Lake City for patients with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and related issues.

Bateman said she first suspected that COVID-19 could lead to a wave of chronic illness in mid-2020, and she was giving lectures on post-viral syndromes by that fall. Her clinic, the Bateman Horne Center, has been studying these conditions for more than two decades, but she said “it’s like herding cats” to keep public attention and funding coming in.
 
Profile of a Long Covid patient in the Washington Post:

She went to one doctor, then another and another
Lindsay Polega’s two-year odyssey with long covid shows how the medical system fails many patients

Gift link, no paywall for 14 days: https://wapo.st/3uQCafR

EDITED on April 22: I have read that the gift link I posted does not work for several folks on the forum. Sorry! I guess gift links don't work in some locations?

Here's the regular Washington Post link for that story:

https://www.washingtonpost.com/health/2022/04/18/long-covid-medical-care-challenge/

I believe the site allows non-subscribers to read a certain number of stories per month before the paywall kicks in. But here's a short extract where ME/CFS is mentioned:

Washington Post said:
Post-infectious syndromes, first described in the 19th century, are among the most mystifying and controversial areas of medical science, with generations of doctors dismissing symptoms as mostly psychological.

It wasn’t until 2006 that the Centers for Disease Control and Prevention launched a public education campaign to raise awareness about one such condition — myalgic encephalomyelitis, better known as chronic fatigue syndrome, emphasizing that it was “a real illness” and that people with the condition needed “real medical care.” Researchers have also recognized increased reporting of post-viral syndromes after the SARS outbreak of late 2002 to 2003, and after people have been sickened by the Epstein-Barr virus, Lyme and other pathogens.

Now with long covid, which has many symptoms that overlap with those of chronic fatigue syndrome, research is finally beginning to take off. The National Institutes of Health last year launched a $1.15 billion initiative to better understand long covid, which will include 40,000 adults and children.
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Pushing ‘Long Covid’ Sufferers Too Hard Could Cause Them to Crash
NY Times
Most of us were brought up with the folk wisdom that exercise is the best medicine, and often it’s true. But not for people who are suffering from long Covid and other post-viral syndromes. For them, overexertion can severely aggravate their conditions, whose symptoms may include fatigue and brain fog. There’s even a term for it: “push and crash.”

The problem is that push and crash — which the Centers for Disease Control and Prevention warns about in a bulletin to health care providers — is precisely what the American employment system is geared to cause.

Employers understandably want their people to get off sick leave or disability and come back to work as soon as possible. But providing them with needed accommodations too often falls by the wayside. And the workers themselves are eager to prove they aren’t lazy or expendable, so they may do too much and suffer a relapse.

Then there’s the American disability system. It doesn’t deal well with people suffering from long Covid and similar ailments, who can feel great one day but be incapacitated the next. The system inadvertently discourages some long Covid sufferers from returning to work — for fear that if they return, they will be considered fully recovered, which they aren’t.

study in January said absences and dropouts from the work force caused by long Covid could account for about 15 percent of the unfilled jobs in the U.S. economy.

I was struck by the findings of a recent report that was released in conjunction with a Biden administration initiative to research and cope with the lingering aftereffects of Covid infections. The report, a part of the Solve Long Covid Initiative, estimated that from 2 percent to 4 percent of U.S. adults are expected to suffer from some disabling symptoms of long Covid.

I spoke with the report’s three authors about the problem of “push and crash.”

“When people are forced to overexert themselves, it pushes the body into emergency mode and can cause permanent damage,” a condition known as post-exertional malaise, said Melissa Smallwood, a science and technology policy researcher.

She added, “One major risk factor for this is pressure to get back to work too soon.”

Her co-author, Emily Taylor, told me, “long Covid is not entirely new.” Taylor is vice president of advocacy and engagement at Solve M.E. (M.E. stands for myalgic encephalomyelitis, which causes chronic and debilitating fatigue.)
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full article
https://www.nytimes.com/2022/04/18/opinion/long-covid-cdc-fatigue.html
 
rvallee said:
Not 100% sure about this guy, he got many things wrong at first, but seems to be learning.

Name-drops ME a few times, seems to at least get the impact of misguided advice.

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I was puzzled about this too, as Slavitt's comments have been vey bad in the past. I get the sense here that he is just repeating what he has been told by others possibly contributing to his podcast. And one of the people referenced in his thread that he's probably relying on for information has recently acknowledged mistakes:



I am wondering if these comments by Slavitt and those of others may signal a change in the way this is being talked about in the US? It is quite a change from the narratives we have been getting. He obviously feels there is some use in pursuing this angle now and he is politically connected. There are so many Long Covid patients. Are people stating to get it?

ETA: This is the post that references Putrino Lab
 
New podcast on Long Covid from "Follow the Science" with journalist Faye Flem. It seems she's planning several episodes on Long Covid and more will come.

This time she interviews Bruce Levy, head of the Recovery Center. Nothing new, but good, general info on Long Covid with some mentions of ME/CFS as well.

Cracking the Mystery of Long Covid w/Bruce Levy

Some scientists think long Covid is caused by lingering inflammation. Others think the virus might hide out in the body. Two years into the pandemic, scientists are scrambling to understand long Covid and find treatments.


Bruce Levy is chief of the Division of Pulmonary and Critical Care Medicine at Brigham and Women’s Hospital. He now heads the Recovery Center, which was set up to treat and study long Covid.


We talk about risk factors for long Covid, the most common lingering symptoms, the different theories for its cause, the hunt for treatments and how the threat of long covid should shape people’s risk calculations.
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Kalliope said:
Podcast JOSPT Insights: Ep 77: Less is more - the mindset shift clinicians need for long COVID, ME and other post-viral illness, with Dr. Todd Davenport

"How prepared are you to support someone who is living with post-exertion symptom exacerbation? Dr Todd Davenport wants to start a conversation about re-imagining the way most of us have thought about fatigue, physical activity and exercise."

ETA: This is the first episode of two with Dr. Todd Davenport. The next will be focusing on pacing.

Copied to this thread:
JOSPT: Lessons from ME/CFS for Long COVID - 4 part series, 2022, Davenport et al
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The second episode is out:

JOSPT Insights - Ep 78: Managing the condition that breaks all the rules - pacing and post-exertion symptoms exacerbation, with Dr Todd Davenport
 
Says it's only an abstract for now so paper should come out later. The idea that not finding evidence of infection in the blood positively means no virus is present is frankly bizarre, especially given common knowledge that many pathogens are latent in almost all humans, even more so that many of them are known to activate much later. I guess it must be too hard to look in the lymphatic system?

Still, a human body is relatively as small compared to the planet Earth as it is large to a virus. It's roughly the same idea as thinking that some satellites in orbit looking at the surface at low resolution positively means the entire volume has been checked, including everything under cover. Or trying to find that one water pump dishing out cholera by looking at the combined outflow of the entire sewer system. Makes no sense at all to forbid things just because they're hard to do. I mean, how could bacteria possibly survive the acidic environment of the stomach? Puh-lease.

 
rvallee said:
Says it's only an abstract for now so paper should come out later.
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There is a pre-print from February, though it doesn't have a whole lot more detail.

There's also this report for GI and liver tissue, plus the recent findings of virus in stool samples, and anecdotal reports of Long Covid improvement with Paxlovid. Hopefully this is the start of some serious research effort to figure out if long-term persistence of Covid is common and if it is associated with Long Covid symptoms. This seems to me like a fairly answerable question that would move our knowledge of LC (and probably also ME) forward, whether the results are positive or negative.
 
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