Long Covid in the media and social media 2023

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Kalliope said:
I wonder if Dr. Griffin might belive that pacing is the treatment protocol from the PACE trial?
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That's why they chose the name. It worked amazingly well. I've seen it so many times. In evidence-based medicine, clearly no one checks what's in the box. They look at the label on the box and assume it was labeled correctly, think no further of it. And if there are many boxes in a case, they only look at the label on the case that says what's in the boxes. No one actually checks anything, everyone assumes the process is flawless.

It's not as if attention to details is important, or something like that. In my own (past) profession, missing a detail, a single character out of place, means that nothing works. Medicine is lacking in that immediate feedback mechanism, especially with a general attitude not to dwell on mistakes, they happen, just move on. No other profession works like that. Hell, medicine doesn't even work like that, but it operates this way.
 
rvallee said:
That's why they chose the name. It worked amazingly well. I've seen it so many times. In evidence-based medicine, clearly no one checks what's in the box. They look at the label on the box and assume it was labeled correctly, think no further of it. And if there are many boxes in a case, they only look at the label on the case that says what's in the boxes. No one actually checks anything, everyone assumes the process is flawless.

It's not as if attention to details is important, or something like that. In my own (past) profession, missing a detail, a single character out of place, means that nothing works. Medicine is lacking in that immediate feedback mechanism, especially with a general attitude not to dwell on mistakes, they happen, just move on. No other profession works like that. Hell, medicine doesn't even work like that, but it operates this way.
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Yes, it's such a pity this field is full of vague words. "Fatigue" "pain" "(post exertional) malaise" etc. Pacing is not a good word either.

I guess the patients in the PACE trial kind of paced up and down the hallway in the 6 minutes walking test, without pacing at all :confused:
 
Is Dr Griffin getting hung up on the Pace Trial authors claims that CBT & GET were more effective than the Adaptive Pacing Arm(APT) of the trial, because some patients filled in questionnaires differently.

I had a skim through the APT participants manual the other day, and if someone had expected me to fill in that amount of paperwork, activity diaries etc. I think I would have imploded.

Links to APT therapists and participants manuals available in this thread.
https://www.s4me.info/threads/pace-trial-manuals-no-longer-accessible.4221/
 
Two actually decent articles on long covid, except for omitting the similarities to ME, from forskning.no with a focus on how debilitating the illness is (though the framing of "fatigue" as the most bothersome symptom when it will be read by most as people are just a bit more tired is frustrating).

First and interview with a long covid patient, with two researchers from our national institute of public health/FHI:
Christel has long covid. What she fears most is if something serious has happened to her brain

There's a description of PEM as cognitive symptoms following physical exertion? Anyways, much better than the "post exertional fatigue" we usually get when Wyller or Flottorp is interviewed. The two researchers from FHI (where Flottorp works) make some good comments, although saying people have problems "up to three months" based on if someone went to their GP (by this point you will have been told "let's wait and see" or a referral has been sent by which point you wait to see a specialist not continue to go back to your GP..)

The researchers talk about systematic reviews, but unfortunately does not mention the flaws, I wish they had spent more time on the "real world" data of sick leave, where there has been an increase in sick leave lasting more than six months for people who have had covid (I would also like to get some data on how many have reduced their working hours... but oh well).

Second article about a study on quality of life of people with long covid, doubt anyone here is surprised by the comparisons being made as they have been made about pwME previously:
Long covid: Researchers compare the symptoms with advanced cancer and severe kidney disease
 
The Guardian
'No one is talking about it': the cruelty of long Covid in the global south

quotes:

As research focuses on richer parts of world, people in less developed countries suffer from lack of awareness and support

....

Dr Caroline Hilari, who coordinates a long Covid study in children in Bolivia with GIZ, a German development agency, says that interest in Covid among the medical profession had faded since the acute phase of the pandemic, and that other doctors often ask them why they are looking at long Covid at all. “It’s not a huge, huge public health problem,” she said. “But over half of the kids in our study are symptomatic.

“I think the fact that long Covid has not been in the media here is basically because we have more deadly diseases,” she added. “Just recently we’ve had kids dying of dengue and scorpion stings. When people die, that gets into the media. But chronic, disabling conditions do not – and maybe that’s the cruelty of being in a less developed country.”
 
Despite the continued indifference of healthcare systems, public officials and medical institutions, there has been a recent shift in how Long Covid is covered in the media. It pretty much went from "not even a thing" to "this is a giant problem" over the last few weeks as studies are confirming the scale, and cost, of the problem.


This is how Germany fails in dealing with Long Covid
https://www.zeit.de/gesundheit/2023-07/long-covid-erkrankung-forschung-gelder-sparen
https://www-zeit-de.translate.goog/...-sparen&_x_tr_sl=auto&_x_tr_tl=en&_x_tr_hl=en


There is probably hardly anyone in Germany who does not know at least one person who suffers from Long Covid . If you were spared: Haven't you noticed in one or the other conversation how lucky that is?

Even if you apply the lowest scientific assumption, it is clear: at least two million people in Germany had or have Long Covid. Some are completely unable to work, others struggle exhaustedly through everyday life, their job, their social life.
...
The long-Covid expert Carmen Scheibenbogen from the Charité, who sat next to Karl Lauterbach in the press conference, spoke of "over-regulation".

And she knows what she is talking about, after all she is one of the leading researchers in Germany on Long Covid and ME/CFS - a serious neuroimmunological disease that Long Covid can develop into.
...
So if Lindner and Scholz lack empathy for those affected: Being able to treat Long Covid faster and better thanks to good research is simply a profitable business.
 
rvallee said:
Despite the continued indifference of healthcare systems, public officials and medical institutions, there has been a recent shift in how Long Covid is covered in the media. It pretty much went from "not even a thing" to "this is a giant problem" over the last few weeks as studies are confirming the scale, and cost, of the problem.
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Might be a combination of media tending to cover the same stories in unison, research on the financial cost (nothing worries the rich/politicians like the economy), and finding a gene (which makes it more "real").
 
Doesn't name or link to the study.


New Northwestern study reveals alarming impact of long Covid on patients
https://www.fox32chicago.com/news/new-northwestern-study-impact-long-covid-patients

Researchers at Northwestern Medicine found that among those tested, 85% reported decreased quality of life, 51% said they had cognitive impairment, 45% had altered lung function, 83% had abnormal CT chest scans, and 12% had elevated heart rate on rhythm monitoring.

"You will have many patients come to us still in good numbers to fill up our clinics with maybe the third, fourth, fifth infection, and now having finally developed post-Covid symptoms, not allowing them to fill up hospitals, ICUs and overflow but still with symptoms that are enough to be disabling to their lives as previously known," said Dr. Marc Sala.

Long Covid occurs in about a third of Covid survivors and is now the third leading neurologic disorder in the United States.

 
Yet another not bad article from Norway, although the focus this time is there will be a Norwegian paxlovid trial.

No mention of ME, and I think if the head of the GP association interviewed gave some thought to this she'd realise there IS research on the patients that keep going to see their GP due to long covid, but oh well.

Håper ny tablett kan forhindre long covid
Hope new tablet can prevent long covid
 
The US department of Health and human services has quietly told a truth. Very quietly. I guess this counts as public health now. Or at least provides legal cover so they can say that they absolutely did very quietly say it once or twice.

It's getting easy to see how some pandemics in the past were bad enough to kill 1/3 of a continent's population when we are still so bad at this today, with all the tools and knowledge at our fingertips.

I really wonder what AIs will make of this. I don't think they will be impressed.

F1FpA41XoAAiZhn
 
Sly Saint said:
main researcher is Dr Igor Koralnik. There are a number of articles online(and linked to on this forum) over the last few years about him and his team and their clinic;
research paper might be this one https://onlinelibrary.wiley.com/doi/full/10.1002/ana.26649
"Neurologic Manifestations of Long COVID Differ Based on Acute COVID-19 Severity" from may 2023
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Chasing the "3rd leading neurologic disorder" quote. Oh, that was last year, actually. And still complete inaction.

And it's based on analysis from the General Accounting Office, which is the main accounting agency of the US government. So not even from a health agency. Wow. We are really basically lead by the captain of the Titanic here. This ship is completely rudderless. All our ships, really.


July 2022
AAN Members Advocate for Research for Post-acute Sequelae of COVID-19, the Third Leading Neurologic Disorder Today
https://www.aan.com/AAN-Resources/D...ard-of-directors/presidents-column/july-2022/


According to a February 2022 analysis by the US General Accounting Office, there were 81 million survivors of COVID in the US, and it estimated that 30 percent have PASC or long COVID. By the end of May, the number of survivors grew to 82.5 million—meaning there were as many as 24.75 million Americans considered long haulers. This makes PASC the third leading neurologic disorder, second only to tension-type headaches and migraine. These bleak numbers are expected to continue to rise.


They have, indeed, continued to rise. By, you know, doing nothing about it. Shmart.
 
I don't think it was noted before given his habit of blocking all of us, but this is seriously impressively wrong for someone who has literally claimed expertise on this very topic.

I guess "few" and "no" means tens of millions and adds up to trillions in economic losses, with who knows how many dead as a consequence of this failure. Maybe he just uses alternative math?

(Michael Sharpe saying it's wise not to expect any long-term illness from COVID)
F1GRWm8WAAYHCoD


Edit: I feel like this other picture belongs right below this one. It, uh, really ties the room together. Like a good rug.

(Graph showing a massive rise in long-term illness right after COVID).
F1HCsUUWYAEFUBx
 
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Time
Scientists Are Just Beginning to Understand COVID-19's Effect On the Brain

quotes:

If you were to look at the brain of someone infected by certain viruses, like rabies, you would see “virus teeming everywhere. It’s black and white” that the brain is infected, says Dr. Avindra Nath, clinical director of the National Institute of Neurological Disorders and Stroke (NINDS).

With SARS-CoV-2, there’s more gray area.

...

While there may not be a single solution, that doesn’t mean there’s no solution. Ely has found that “cognitive rehab,” a process of rebuilding the brain’s function through targeted mental exercises, can help people who develop similar cognitive decline after stays in the intensive-care unit. That approach could be risky for people with Long COVID, many of whom experience worsened symptoms after mental or physical exertion, Ely says—but changing the immune system’s function in hopes of reducing inflammation in the brains of people with Long COVID is another promising route.
 
"This open-label, single-center, investigator-initiated study was conducted at the Bateman Horne Center (“BHC”) with an unrestricted investigational grant."

Virios Therapeutics Announces Positive Data Demonstrating Improvement in Multiple Long-COVID Symptoms Following Treatment with a Combination of Valacyclovir and Celecoxib in an Exploratory, Open-Label, Proof of Concept Study
ATLANTA, July 17, 2023 (GLOBE NEWSWIRE) -- Virios Therapeutics, Inc. (Nasdaq: VIRI) (the “Company”), a development-stage biotechnology company focused on advancing novel antiviral therapies to treat debilitating chronic diseases, including fibromyalgia (“FM”), today announced that female patients diagnosed with Long-COVID illness, otherwise known as Post-Acute Sequelae of COVID-19 infection (“PASC”), exhibited clinically and statistically significant improvements in fatigue, pain, and symptoms of autonomic dysfunction and general well-being related to Long-COVID when treated open-label with a combination of valacyclovir and celecoxib (“Val/Cel”) for 14 weeks, as compared to a control cohort of female Long-COVID patients matched by age, gender and length of illness and treated with routine care. The statistically significant improvements in PASC symptoms and general health status were particularly encouraging given that the mean duration of Long-COVID illness was two years for both the treated and control cohort prior to enrollment in this trial.

This open-label, single-center, investigator-initiated study was conducted at the Bateman Horne Center (“BHC”) with an unrestricted investigational grant. BHC is a non-profit, interdisciplinary Center of Excellence advancing the diagnosis and treatment of chronic fatigue disorders including myalgic encephalomyelitis/chronic fatigue syndrome (“ME/CFS”), FM, post-viral syndromes, and related comorbidities.

Based on these data, the Company plans to meet with the Food and Drug Administration (“FDA”) in the second half of 2023 to discuss opening an investigational new drug application to formally assess treatment of symptoms associated with PASC using a fixed dose combination of valacyclovir and celecoxib.

Key Highlights

  • Female patients diagnosed with Long-COVID exhibited clinically and statistically significant improvements when comparing both within the Val/Cel cohort and between study cohorts in:
    • fatigue as measured with both the PROMIS fatigue instrument and a numeric rating scale (“NRS”) for fatigue,
    • pain as measured by a NRS scale for pain,
    • and in autonomic dysfunction symptoms as measured using the Orthostatic Intolerance Questionnaire.
  • Two different scales for Patient’s Global Impression of Change documented improvement in overall health when treated with open-label Val/Cel twice daily for 14 weeks.
  • Treatment with Val/Cel was generally well tolerated, with an observed safety profile consistent with the known safety profiles of valacyclovir and celecoxib. There were no serious adverse events observed in this study and only one treated patient discontinued treatment due to adverse events, possibly related to Val/Cel treatment. Among those patients receiving Val/Cel, nausea was the most common adverse event. The most common adverse events in the routine care group were headaches and muscle pain.
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https://www.globenewswire.com/news-...-of-Valacyclovir-and-Celecoxib-in-an-Exp.html


Forum thread on the company here:
Virios Therapeutics - biotech company with anti-viral therapies for post-infection syndromes
 
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