Long Covid in the media and social media 2022

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"IN HIS OWN WORDS: advocating for ME/CFS. Fulton resident Billy Hanlon is sharing his story to help address unmet needs for chronic fatigue syndrome and Long COVID"

https://www.swconnector.com/stories/in-his-own-words-advocating-for-chronic-fatigue,6210

"There are several noticeable gaps for ME patients in the Minnesota healthcare landscape. For educational purposes, there are less than three medical professionals in our state that have a foundational grasp or clinical knowledge on ME. As a result, many of us are disbelieved or discredited in these settings."

"Minnesota is such a proud area for medical acumen and I’m advocating to see that translate here with ME and now Long COVID. I’d like to see our state become a more active participant, both in research and clinical care."

"Despite a high disease burden and prevalence, ME has remained one of the lowest funded diseases by the US National Institutes of Health (NIH), the largest biomedical research entity in the world."

"Of course, money alone doesn’t solve complex problems or difficult diseases, but it surely helps shape public policy, impacts public perception, helps to stimulate research interest and it expedites progress."

"The nature of these illnesses, exertional diseases like ME and now Long COVID, has made it hard for sufferers historically to campaign. Change takes hard, concentrated effort."
 
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I'm seeing more and more of this kind of unfortunate over-estimation of the risk of Long Covid. It's definitely not the case that 30% of people who get Covid will have disabling LC for any reasonable definition of disability.
 
Heads up that I've been seeing several recent comments from long haulers that there has been an increase in social media posts trolling and denying Long Covid, harassing (actual harassment this time) some of the prominent ones. Not exactly ironically, aside from blaming vaccines, they are mostly saying the same things as our BPS overlords, just without the pretense: weak people taking a vacation from having to work. Also: doesn't LC exist, obviously. Just stress, or anxiety, or depression. You know, the usual.

Looking at the accounts, most seem to be pandemic deniers in general, especially antivaccination. They're pretty unhinged. There's been a huge uptick recently too following Justin Bieber's problems, some antivaccine mobs are leaning hard on it and directly blaming vaccines as the only real reason.

So either a good idea to stay off, or to be quick on the blocking. Until medical research finally gets started, it's going to get even more political and unhinged. The thing about medicine playing devil's advocate here is that there's no one else to do the defense. So nice to have judge, jury and prosecution aligned against you and no right to defense. What a joke.
 
[added - sorry this comment has been moved so it no longer is clear what it refers to. I was responding to the posting of a link to a Science article by @Binkie4 now several postings above, ‘Clues to Long Covid’ see https://www.science.org/content/article/what-causes-long-covid-three-leading-theories ]

Not read it all the article yet, but the three theories are:

Micro clots

Almost 2 years ago in Italy, pediatric infectious disease doctor Danilo Buonsenso, who works at Gemelli University Hospital, started to see children who, months after mild infections with SARS-CoV-2, were still short of breath and had crushing fatigue and other symptoms. He now suspects that, in some of them, the cells and tissues that control blood flow are damaged and the blood’s tendency to clot is amplified. Minute blood clots, leftover from the viral assault or fueled by its aftermath, might be gumming up the body’s circulation, to disastrous effect from the brain to joints. “In some patients we have specific areas where no blood flow comes in” or the flow is reduced, Buonsenso says. Is that driving their lingering symptoms? “I can’t say this is the truth, of course. But this makes sense.”
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Persisting viral infection

Meanwhile, in the United States, microbiologist Amy Proal can’t stop thinking about a second leading Long Covid theory: that the coronavirus keeps hurting people by stubbornly enduring in the body, even after acute infection passes. Studies have shown “the virus is capable of persistence in a wide range of body sites,” especially nerves and other tissues, says Proal, who works at the PolyBio Research Foundation, a nonprofit in Washington state. She recently caught COVID-19 for the third time.
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Immune system disregulation

Down under in Australia, immunologist Chansavath Phetsouphanh of the University of New South Wales, Sydney, is chasing a third lead, motivated by what the blood of Long Covid patients has divulged: an immune system gone haywire even 8 months after they’d first tested positive. He had assumed that immune cells galvanized to fight off infection would have calmed down over that time span. So, “It was a surprise that these cells did not recover,” says Phetsouphanh, who is working to set up an international Long Covid collaboration.
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It's not usually understood, but most social progress of the kind that can make the entire difference for us happens through courts, making precedents and enforcing rights. For all the flak shady lawyers get, good lawyers are critical to ending systemic injustice. You can bet lawyers were a huge factor in the AIDS movement.

So court cases like this are important. The insurance companies will pay attention. Our BPS overlords who work to their benefit are paying close attention to this. Their entire career was made to bury this deep underground. It's a rare win, stacked against tens of millions of losses.

 
I saw this got some praise on Twitter (haven’t listened or read transcript myself so far)

-------
From: Dr. Marc-Alexander Fluks


Programme: Ezra Klein Show
Station: New York Times / Apple / Google / Spotify
Date: June 21, 2022
WebRadio:
https://podcasts.apple.com/us/podca...d-long-covid-why/id1548604447?i=1000567243190

https://podcasts.google.com/feed/aH...5MDY5ZDUtMTRjNy00NmUxLTk1YTktNWYzZGY1ZWNiYzU2
https://open.spotify.com/episode/53oyAa8U73FkKWPH67Del2

URL:
https://www.nytimes.com/2022/06/21/podcasts/transcript-ezra-klein-interviews-lekshmi-santhosh.html

Item: PASC: ME and Covid-19
 
Patients and parents of sick kids are doing press conferences to raise awareness of LC while medical authorities are doing everything they can to suppress and minimize the issue. They are begging for help while most twitter physicians are laughing it off as a thing of no concern.

So much for lessons learned from the AIDS crisis.

 
rvallee said:
Patients and parents of sick kids are doing press conferences to raise awareness of LC while medical authorities are doing everything they can to suppress and minimize the issue. They are begging for help while most twitter physicians are laughing it off as a thing of no concern.

So much for lessons learned from the AIDS crisis.

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Scotland is the land of Stone and Carson . Is this really surprising?
 
MedPage Today: RECOVER Researchers Express Hope and Frustration in Their Study of Long COVID
— Like "trying to build an airplane as it is rolling down the runway"

An article about why NIH's long covid study, the RECOVER initiative is materializing so slowly:

Koroshetz compared long COVID to myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) found in other post-viral infections, like Lyme disease or Epstein Barr virus, which can affect people for decades.

"There's a real chance that this is not going to be easy, and it's going to be more like what we've seen with ME/CFS," he said. "RECOVER is put together to leave no stone unturned, so if we don't figure this out at the end of RECOVER, it's not because we didn't try. It's going to be because it's just too hard a problem."

Slow Start to Enrollment

Overall, enrollment for the adult cohort of the study has been preceding as planned, according to Koroshetz. But the Initiative has run into challenges for specific groups, including the acute infection cohort, the pediatric cohort, and the autopsy cohort.

The acute infection cohort has not enrolled as quickly largely due to a lack of awareness of the program, Koroshetz said, noting that most people with COVID-19 are not seeking treatment, which means their healthcare providers are not even able to recommend that they join the study.

He explained that while this specific cohort has proven to be the most difficult to recruit, it is also one that researchers are eager to observe, since it is important to understand "the differences in the recovery process from the acute stage to either a normal recovery [with] no symptoms compared to a pattern which leaves you with persistent symptoms."

The autopsy cohort has a similar problem in that the awareness of need for participation is low, Koroshetz said. Researchers for this cohort need people and their families to be aware of the study and willing to choose to be enrolled after their death.

The pediatric cohort is struggling to enroll mostly due to delays in paperwork, explained Lawrence Kleinman, MD, MPH, of the department of pediatrics at Rutgers Robert Wood Johnson Medical School in New Jersey.

Kleinman, who leads the pediatric study hub at Rutgers, compared the RECOVER studies to a team trying to build an airplane as it is rolling down the runway.​

"It's a complicated study in terms of enrollment. It's a complicated study in terms of assessment. It's a complicated study because we don't have an encompassing definition with any detail about this illness," he said. "It's very hard to study an emerging disease [when] you don't have parameters ... around it when you begin."​
 
Wyva said:
"There's a real chance that this is not going to be easy, and it's going to be more like what we've seen with ME/CFS," he said. "RECOVER is put together to leave no stone unturned, so if we don't figure this out at the end of RECOVER, it's not because we didn't try. It's going to be because it's just too hard a problem."
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I'm reading between the lines here that Dr. Koroshetz says ME is not "solved" yet due to its complexity, not for lack of trying.

But due to brain fog I'm always unsure if I've misunderstood something. Do you interpret the quote in the same way?
 
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