Long Covid in the media and social media 2023

[SNT Gatchaman]

Danny Altmann on BBC - The Life Scientific.

In reponse to question "Are there medical colleagues of yours that are still not convinvced by long COVID?"

"Oh totally. So I think there are people who think that I'm sort of way off-piste worrying about long COVID and spending a lot of my research time working on long COVID. And perhaps wonder, ooh you know, whether it's psychological and whether people are having us on. And those kind of attitudes worry me and make me angry. Because I do think this is an enormous healthcare challenge, yah? If it's as big as most of us think it is, then we've created a medical problem for ourselves and a medical caseload as large again as the whole of rheumatology or all of heart disease. That's enormous consequences for people's lives, for the workforce, for NHS spending, doctor numbers — you know, you name it. So we're kind of obligated I feel to take it seriously."

 

[SNT Gatchaman]

Dr William Li on The Long Covid Podcast (50 minutes). He describes himself as a physician, vascular biology researcher and author. Mentioned previously here.

He is focused on the vascular aspects and frames LC as a completely new disease, noting that no-one is an expert or has the answer. I think that's OK in context and he certainly knows about POTS, brain fog etc, though he does not mention ME/CFS. (He has tweeted once on CFS, in reference to this paper).

"Covid is a brand new human disease... We're all students, we're trying to figure it out."

He views LC through the lens of microvascular disease and chronic inflammation, with "low-grade", "smouldering" auto-immunity in some people.

He is a fan of "food is medicine" in terms of limiting chronic inflammation and attempting to restore homeostasis. Among other things, discusses nitric oxide effect in mobilising vascular endothelial stem cells (foods, eg spinach). Also discusses potential of drugs, such as low dose viagra/sildenefil, as used in neonatal/paediatric ICUs where it is used for regenerating damaged lung vessels (as well as reducing pulmonary arterial hypertension).

"It's also been ... sobering, eye-opening in an astounding and slightly shocking sort of way. And also ... on a personal level somewhat frightening, because what we're seeing is here is a disease that we don't fully know how to treat, that didn't exist before a few years ago, and for which we don't really have tried and true therapies at our fingertips. And that's not a good place for science to be, that's not a good place for doctors to be ... so I'm here to put my effort forward to help folks like you."

On all-tests-are-normal and medical gaslighting:

"I feel terrible when a doctor isn't able to provide some informative answer to a patient. Because when you're a patient even bad news is a better answer than having no news, or even worse being kind of written off as sort of someone who's got something going on in their head. That's like gaslighting: terrible thing."

On high-resolution CT volumetric analysis of blood vessels:

"We were the first to see, astoundingly, that in long COVID, small blood vessels were still missing... in other words blood vessel damage was hidden in plain sight ... Using technology we were able to reveal part of what was going on."

"In the 21st century, humanity deserves to apply its medical know-how and technology to be able to develop truly effective treatments. I mean if we can develop immunotherapies that can literally dry erase cancer from someone's body, which we're starting to see now, then we absolutely need to apply that kind of advanced thinking and advanced technology into helping people with long COVID."

 

[Andy]

"If all forms of cancer were grouped together as one, we'd have no cancer treatments today. The people encouraging combining ME/CFS and LC research are conducting psyops on both communities to stop R&D for both. Please don't be a victim twice. Advocate for separate R&D."

And their Twitter bio says "Part of a coalition of medical professionals, scientific & activist pwLC to liaise with researchers and pharma to advance LC therapies.". I wonder how they are going to deal with the time when the various phenotypes of LC start being determined more clearly, including the ME/CFS one.

 

[Kalliope]

Was curious if anyone has New Scientist access: 'We’re starting to understand how viruses trigger chronic conditions'

'Widespread cases of long covid have shone a spotlight on the role viral infections play in previously neglected conditions like chronic fatigue syndrome and fibromyalgia'

https://www.newscientist.com/article/mg25734282-100-were-starting-to-understand-how-viruses-trigger-chronic-conditions/

New Scientist present the article in their latest podcast. Nothing new, but on the high prevalence of long Covid and the increased attention to ME and fibromyalgia and how infections can trigger chronic disease. Mentions Prusty briefly.

https://www.newscientist.com/podcasts/

 

[RedFox]

"If all forms of cancer were grouped together as one, we'd have no cancer treatments today. The people encouraging combining ME/CFS and LC research are conducting psyops on both communities to stop R&D for both. Please don't be a victim twice. Advocate for separate R&D."

In their analogy, ME/CFS and long Covid should be viewed the same way. They're related, not identical, and aspects of pathology and treatment may be shared between them.

 

[SNT Gatchaman]

If all forms of cancer were grouped together as one, we'd have no cancer treatments today.

Sure, in terms of diagnostics and treatments it's important to understand subtypes; but there is not just a biological problem to overcome, it's political too and numbers = strength.

So counterpoint: if the US National Cancer Institute - with its $7.3B annual budget - didn't exist and you instead had multiple versions of eg Society of Nasopharyngeal Rhabdomyosarcoma (Embryonal Subtype) With Intracranial Extension, then you probably also wouldn't have many cancer treatments.

(I don't know what Louie is on about, they don't seem to have the first clue. I think I recall having blocked that account when I was on Twitter.)

 

[Jaybee00]

 

[Jaybee00]

 

[John Mac]

From the above tweet

A total of 73 project applications with a total volume of over €55 million were submitted for research into late symptoms and long-term health consequences of LongCovid.

Of these, however, only 15 projects were approved with funding totaling €12.5 million
At least one million Germans suffer from #LongCovid.
Nevertheless, Research Minister refuses @starkwatzinger three-quarters of the research proposals on the disease.
The Union accuses the FDP politician of inactivity

 

[Dolphin]

"If all forms of cancer were grouped together as one, we'd have no cancer treatments today. The people encouraging combining ME/CFS and LC research are conducting psyops on both communities to stop R&D for both. Please don't be a victim twice. Advocate for separate R&D."



And their Twitter bio says "Part of a coalition of medical professionals, scientific & activist pwLC to liaise with researchers and pharma to advance LC therapies.". I wonder how they are going to deal with the time when the various phenotypes of LC start being determined more clearly, including the ME/CFS one.

Thread in response to these and similar tweets:

 

[Dolphin]

Thread in response to these and similar tweets:

This ends up on similar lines:

 

[Dolphin]

From the above tweet

A total of 73 project applications with a total volume of over €55 million were submitted for research into late symptoms and long-term health consequences of LongCovid.

Of these, however, only 15 projects were approved with funding totaling €12.5 million
At least one million Germans suffer from #LongCovid.
Nevertheless, Research Minister refuses @starkwatzinger three-quarters of the research proposals on the disease.
The Union accuses the FDP politician of inactivity

I know I sound like a broken record but most government research funded bodies only tend to fund a fraction of research grant applications. You need private money to help ensure other interesting angles get followed up and also to help keep researchers in a field.

 

[rvallee]

Dr William Li on The Long Covid Podcast (50 minutes). He describes himself as a physician, vascular biology researcher and author. Mentioned previously here.

He is focused on the vascular aspects and frames LC as a completely new disease, noting that no-one is an expert or has the answer. I think that's OK in context and he certainly knows about POTS, brain fog etc, though he does not mention ME/CFS. (He has tweeted once on CFS, in reference to this paper).



He views LC through the lens of microvascular disease and chronic inflammation, with "low-grade", "smouldering" auto-immunity in some people.

He is a fan of "food is medicine" in terms of limiting chronic inflammation and attempting to restore homeostasis. Among other things, discusses nitric oxide effect in mobilising vascular endothelial stem cells (foods, eg spinach). Also discusses potential of drugs, such as low dose viagra/sildenefil, as used in neonatal/paediatric ICUs where it is used for regenerating damaged lung vessels (as well as reducing pulmonary arterial hypertension).



On all-tests-are-normal and medical gaslighting:



On high-resolution CT volumetric analysis of blood vessels:

Weird that he talks about how horrible it is to have a disease for which no treatments exist, when this has always been the case, affecting millions. And it has been handled with mockery, negligence and the same gaslighting he seems to think is bad here, but I guess it's only bad for some? I don't know.

Medicine truly has the same problem as in politics: we are not using the same facts as a starting point, have different realities. They're trying to solve a puzzle by discarding most of the pieces, not bothering with most of the ones they don't simply discard, then bring their own favorite pieces out of their pockets and insist those are the only pieces they're willing to try to fit.

So even when people are interested in looking at the puzzle, they're not really doing that. It's all about their pieces, the whole puzzle is someone else's problem, except it's no one's, really. We have none of the resources and all the responsibility. They have all the resources and no responsibility at all. You can't do anything in those conditions, this is complete design failure. Might as well not respect the laws of physics, the outcome is the same.

 

[rvallee]

In their analogy, ME/CFS and long Covid should be viewed the same way. They're related, not identical, and aspects of pathology and treatment may be shared between them.

It's also actually famous that this is how medicine viewed cancer when serious research started and it's as a result of a huge amount of research that they now know better.

It's pretty clear by now that when it comes to predictions, unfortunately medical professionals don't seem to do any better than the average person. Which makes all those assumptions especially self-defeating.

 

[SNT Gatchaman]

Thread in response

That was a good response from Charlos, particularly:

The only reason for the instinct to distance yourself from the conditions is purely due to stigma — But the mistake in thinking that you — this time — are not going to be stigmatized, while you further stigmatize an associated condition, is absurd and extremely irrational.

 

[rvallee]

A "possibility" of improvement in the next 30 or so years. "Future" treatments, that are actually literally the old treatments that are known to fail, may work. Somehow. According to some gut feeling. Or whatever.

An entire life thrown out using complete BS as excuse. Not even pretending to care. Not even pretending this is any legitimate. This is the medical equivalent of sham trials with sentences handed out in secret, without any process.

This is really, in all its glory, a textbook example of the banality of evil. "Evil" is not about deliberately inflicting harm on others, it's indifference to it. It's often bureaucratic and built on lies but, hey, it's happening to someone else so whatevs.

 

[Peter T]

I am at the far end of that thirty years. Next year I will reach retirement age. I sought to stay in some form of work for the first six years of my ME, but was forced to stop any work in 2000.

That speculated spontaneous recovery did not happen, an effective treatment was not discovered. When I gained my NHS pension I did hope that one or the other would happen but now my health is worse than it was when I first retired, I am one of the 94% of people with ME that do not recover. I undoubtedly met the tier 1 condition, and would have experienced significant hardships if my pension had been refused on these spurious grounds.

[added - if the possibility of a miracle recovery or a new not yet envisaged treatment is grounds for refusing a pension then no one would be entitled to ill health retirement.]

 

[Sean]

Charlos on Twitter said:
The only reason for the instinct to distance yourself from the conditions is purely due to stigma — But the mistake in thinking that you — this time — are not going to be stigmatized, while you further stigmatize an associated condition, is absurd and extremely irrational

"First they came for the socialists, and I did not speak out – because I was not a socialist.
Then they came for the trade unionists, and I did not speak out – because I was not a trade unionist.
Then they came for the Jews, and I did not speak out – because I was not a Jew.
Then they came for me – and there was no one left to speak for me."

Martin Niemöller​

Also a reminder that the disabled were among the very first groups targeted for eradication by the Nazis. Long before the war actually started.

 

[John Mac]

Long COVID: The Top 2 Neuropsychiatric Symptoms

Headaches and fatigue are the top neuropsychiatric symptoms of so-called ‘long COVID’, research finds.

These were the two most common symptoms reported over four months after people had had COVID, with 69 percent reporting fatigue and 67 reporting headaches.

Next most common were:

• changes to taste (54 percent) and smell (55 percent),
• mild cognitive impairment (47 percent),
• 30 percent had problems with memory,
• and 20 percent report confusion.

Other physical symptoms of long COVID include:

• cough,
• muscle aches,
• nasal congestion,
• and chills.

Perhaps unsurprisingly, 25 percent also met the criteria for depression.

Dr Elizabeth Rutkowski, study co-author, said:
“There are a lot of symptoms that we did not know early on in the pandemic what to make of them, but now it’s clear there is a long COVID syndrome and that a lot of people are affected.”

............


Fatigue is likely such a common symptom of long COVID because the infection raises levels of inflammation in the body — and these levels remain raised.

https://www.spring.org.uk/2023/03/neuropsychiatric-c.php

 

[janice]

I don't have access, but this correction notice does not inspire confidence:

I get access via Libby app and my MK library card.
I have photos of both editors front piece and page 14 article. How can I attach here if of interest?