News about Long Covid including its relationship to ME/CFS 2020 to 2021

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Kalliope said:
He says he doesn't think anyone could imagine this kind of after effects.
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Anybody speak the language who can direct this person in the direction of the people who did not only imagine but forewarn about it? Especially the decades-long of such warnings that were dismissed and mocked by his peers (and probably himself, let's be honest here). Or, I don't know, just the damn ICD reference code for post-viral fatigue syndrome, or something?! Or the dozen or so of post-XXX fatigue syndromes. Hellooooooo.

Does not speak well of medicine to hold two mutually exclusive propositions as true:
  1. We've always known about post-viral fatigue (unless patients present with it, then it's a brand new mystery)
  2. Nobody could have predicted this (thing that has an actual ICD code dating back 50 years)
 
Rick Sanchez said:
Yes, it was him.

He basically said there's an awful lot of politics involved with ME/CFS which would be unfortunate to get mixed into the debate.

He also said



This was back in late July though, pretty arrogant to just assume the consequences are not chronic given we simply can not know because enough time has not elapsed yet.

The guy seems pretty clueless in general.

I have the full Danish quote here. In case you are interested.
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Easy solution to the politics problem: let's not involve the deniers. Problem solved. Literally. They are the ones bringing politics into the mix, uninvited, disliked and extremely incompetent. Very easy, just have them shut their pie hole and we'll be good to go. What's so hard about that? Oh, they can't, can they? They have to activate their pie hole to make noises, do they? Which is the whole problem. Literally all of it. Remove it and the "politics" aspect is gone.

This guy seems to have problems understanding what chronic symptoms are, seems to imply chronic symptoms are static and permanent. Which is completely wrong. Not exactly a good look for a... medical doctor. Imagine the equivalent of a senior programmer being confused by the concept of a... variable. Good grief, this is so awful.
 
Rick Sanchez said:
Yes, it was him.

He basically said there's an awful lot of politics involved with ME/CFS which would be unfortunate to get mixed into the debate.

He also said



This was back in late July though, pretty arrogant to just assume the consequences are not chronic given we simply can not know because enough time has not elapsed yet.

The guy seems pretty clueless in general.

I have the full Danish quote here. In case you are interested.





No, that's not what I meant, although I am extremely poor at phrasing myself, so probably been careless with how I phrased it.

It's more that Danish experts don't want to bring ME/CFS into the discussion
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Thank you for the quote, @Rick Sanchez

This wading in cognitive dissonance is fascinating to observe..
 
rvallee said:
Easy solution to the politics problem: let's not involve the deniers. Problem solved. Literally. They are the ones bringing politics into the mix, uninvited, disliked and extremely incompetent. Very easy, just have them shut their pie hole and we'll be good to go. What's so hard about that? Oh, they can't, can they? They have to activate their pie hole to make noises, do they? Which is the whole problem. Literally all of it. Remove it and the "politics" aspect is gone.

This guy seems to have problems understanding what chronic symptoms are, seems to imply chronic symptoms are static and permanent. Which is completely wrong. Not exactly a good look for a... medical doctor. Imagine the equivalent of a senior programmer being confused by the concept of a... variable. Good grief, this is so awful.
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You put things so well;):laugh::thumbup:
 
chrisb said:
How can a professor of infectious diseases say "he doesn't think anyone could imagine this kind of after effects"? Unless, of course, he means that such symptoms could not be imaginary and must be "real".
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No, he's saying that no one would have predicted that COVID-19 would lead to long-term symptoms.

That comment simply reveals his ignorance, this thread (started on 22nd of January) is proof that we did "imagine" these kinds of after effects as a result of COVID-19.
 
Chronic fatigue doctor talks treatment after CFS found to be possible side effect of COVID-19
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https://www.fox2detroit.com/news/ch...-found-to-be-possible-side-effect-of-covid-19

This is more like an advert for Dr. Joel L.. Young, the medical director of the Rochester Center for Behavioral Medicine, and his book 'Understanding Chronic Fatigue' so I don't think I will highlight it widely unless I hear that his book is good.

I have to say I'm a bit suspicious that the patient may be getting something from promoting Dr Young.

I remember in my country a few years ago a Perrin technique clinic highlighted in advance that a national radio program was going to cover ME and their clinic.
In the interview, the patient seemed desperate to plug the clinic. One interpretation was that they were simply grateful and wanted to help other patients; however I was suspicious that another possible reason was that they were going to get money or free appointments from plugging the clinic.
 
"What I presented in the book, is a study we performed here in Rochester, Michigan, looking at 30 folks treated with lisdexamfetamine, and we found folks with chronic fatigue very well compared to placebo,"
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I hope he has excellent liability insurance. If his patients do have ME this will turn out badly in the medium term. This drug is not fixing what is broken but artificially creating a sense of more energy that is not really there.
 
I’ve got long Covid: I feel abandoned

https://www.thetimes.co.uk/article/ive-got-long-covid-i-feel-abandoned-32wshfcxt

Not a great article but:
The second time I rang 111, when the chest pain got really bad, the “clinician” told me that it was all anxiety-based and that I should get out there and start exercising again. I followed orders. Predictably enough, after a few days I crashed back down into an extreme state of fatigue, with the breathing worse than ever. Shortly afterwards I sank into a depression for five days, when I could not stop crying. The energy-sapping breathing problem was a big reason for that.
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Especially this:
Another paradox with Covid is that almost everyone who has had it has had to deal with sudden and inexplicable reversals. I remember writing an email to someone in June stating that I felt I had “turned a corner”. Two days later I crashed and was as bad as I had been for several weeks. It was during that period that my wife, who has been so understanding throughout, came into the bedroom as I was resting and merrily inquired: “So, how is Mr Covid today?”
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Yet this harmful advice, which has no evidence of benefits and consistent reports of harm, remains in effect. Despite clear failure in practice as well as in research. Despite massive harm and overwhelming rejection of consent.

Decades of antagonistic hubris have made the people responsible for this dig their heels so far in they can't possibly relent, even in the face of very public evidence of their failure. All for ego, all for their reputation, all for their career and their stupid ideology. But by far the failure is in oversight and accountability, total dereliction of duty, impairing progress and doing harm.

Because those are the stories we hear about. What about those who have no support system at home? How many have died already because of this? How many have committed suicide? The saddest is that we will never know, these people were erased from society, all to feed a monstrous ideology with a clown mask.
 
rvallee said:
Has an interview near the end with the professor of exercise physiology, Rob Copeland, that I quote below. Still some concerns about why there is such obsession with the idea that exercise should be the end goal, so many people live healthy sedentary lives this is not necessary, but it's interesting to see the obvious internal struggle this is causing in someone who really wants exercise to be the answer but sees it clearly doesn't appear to be.
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When I was growing up the people I knew and lived with and socialised with and went to school with (or their parents) were, to a large extent, imbued with the ideas behind the Protestant work ethic. I think this is extremely common. My father ran his life by it - hard work, early to bed and early to rise, frugality, sick people were attention-seeking shirkers and were usually assumed to be making it up and were just lazy. He would not have been happy to learn that some people simply couldn't exercise at all - it would go against all his beliefs about the right way to live one's life and he simply would not believe it. I think this is extremely common. Activity and being busy are right and good, sickness and immobility are wrong and evil, and nothing would have changed his mind.

I think the powers-that-be share these beliefs too. The poor, the long-term ill, the unlucky, are architects of their own misfortune in many people's minds. Compassion is in very short supply, in my opinion.
 
Trial by Error by David Tuller: Some Stuff about Long-Covid, BMJ and ME
It is clear that there will be much grappling going forward over the similarities and differences between long-Covid and ME (or CFS, or ME/CFS, or whatever this illness or cluster of illnesses is being called). The two entities overlap in some ways, but no one should conflate them.

We are past the pandemic’s half-year mark. Since most (but not all) case definitions in the ME and CFS category require symptoms to be present for six months, some long-Covid patients, called long-haulers, might already meet diagnostic criteria for the disease. But many clearly suffer from symptoms and organ damage not associated with ME and its variants.
 
Kalliope said:
Trial by Error by David Tuller: Some Stuff about Long-Covid, BMJ and ME
It is clear that there will be much grappling going forward over the similarities and differences between long-Covid and ME (or CFS, or ME/CFS, or whatever this illness or cluster of illnesses is being called). The two entities overlap in some ways, but no one should conflate them.

We are past the pandemic’s half-year mark. Since most (but not all) case definitions in the ME and CFS category require symptoms to be present for six months, some long-Covid patients, called long-haulers, might already meet diagnostic criteria for the disease. But many clearly suffer from symptoms and organ damage not associated with ME and its variants.
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Evidence and history show that chronic diseases like these aren’t either/or silos, so while I do respect Tuller he has no real evidence to say that they shouldn’t be conflated.

I don’t have bulletproof evidence other than the studies and surveys that have come out showing a striking resemblance in many core symptoms between long COVID and ME/CFS, plus the retrospective studies looking at SARS, EBV, Giardia, and other post infectious syndromes leading to ME/CFS. Each of these other infections caused unique long-term symptoms yet all had a common effect of causing ME/CFS in a significant percentage of people.

People with COVID can have lasting organ damage due to the fact that this novel coronavirus can be particularly damaging, but that doesn’t mean that they can’t also have ME/CFS too. It’s myopic to think it has to be either/or.
 
I think it's too early to tell who has what. The point about not conflating seems to me to be reasonable in the sense that some will develop ME, but others will have organ damage and not ME which may need different, and sometimes emergency, testing and treatment. And some may have both.
If all are put in the ME category before adequate testing, some with organ damage may be missed. Each patient will need individual assessment, just as all people with ME should have before being diagnosed with ME. I suspect @dave30th and @leokitten agree about this, but are expressing it differently.
 
I'm just posting this here as a long shot, in case anyone on Twitter might alert Paul Garner to it. There was a letter published in JAMA in 1991 by Thomas English, a surgeon from North Carolina. Someone at the MRC thought it worth preserving, as I first saw it in the on-line National Archives file. No-one there seems to have taken much notice of the contents. It might be useful for someone such as Paul to use when considering the lack of progress.
Skeptical of Skeptics
Thomas L. English, MD
Author Affiliations
JAMA. 1991;265(8):964. doi:10.1001/jama.1991.03460080032011

Skepticism permeates our profession. It is ingrained during medical training and reinforced by professional experience. Who among us has not repeatedly seen claims for fourth-generation drugs with no side effects, new operations that yield glowing results with minimal complications, or the latest infallible, high-tech diagnostic procedure... only to discover months or years later that these claims missed the truth by miles. Small wonder most of us are skeptics. To be skeptical is to be detached, rational, and objective. Skepticism is widely perceived as the prudent, conservative way to deal with ambiguous situations—times when even experts are confounded. Healthy skepticism is the "in" attitude for intelligent, discriminating physicians.

But healthy for whom?

Four years ago I was diagnosed as having chronic fatigue syndrome (CFS). The experience has given me a new perspective of my profession, one that is not always flattering. In one early report, the average CFS patient had previously...
 
I could provide a sci-hub link but presume all can do that anyway.

He describes the condition we all know, the difficulties of finding believing doctors, the hardships caused-(no-one wants an absent minded surgeon) and a plea for doctors to remain open minded.

My thinking was that these views were expressed in JAMA , by a doctor holding a responsible position, almost thirty years ago, and the views were noted by the UK medical establishment. It did not appear to greatly influence them. The forces of opposition are persistent and resilient. It will take persistence to effect change.
 
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