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

https://twitter.com/user/status/1327702665019744256

 

https://twitter.com/user/status/1345131854777757703

 

What Long Flu Sufferers of the 1918-1919 Pandemic Can Tell Us About Long COVID Today

https://time.com/5915616/long-flu-1918-pandemic/

So much for the "malady of modern urban society" trope. Inconvenient facts that go against the narrative are so easily ignored.

Weird how this "leading researcher" who made so much noise about not being able to research exactly this never actually has his expertise on the topic acknowledged. This is Wessely's jam, he has very loudly been "the" expert on this very topic for years, decades even. Yet this expertise is only ever acknowledged in very narrow confines, never dares pretend he knows anything about this whenever he actually should have something to say.

He says they learned important things, and yet nobody ever asks and he never offers. Odd. Which opens the question of why they would ask his opinion, seeing as it surely must be as a "world-leading expert" on this very topic. And yet his entire career may as well not exist, certainly no context is provided that he has not only spent much of his career researching exactly this and has loudly proclaimed to have made significant progress.

 

https://twitter.com/user/status/1345589005149114368

 

Haven't seen this yet myself, but looks interesting
https://twitter.com/user/status/1345742384311754752

 

https://twitter.com/user/status/1345768664096763904

 

In the latest episode of This Week in Virology they take a look back and reflect over 2020.

Dr. Brianne Barker:
- So when I’ve been thinking back about this year, I’ve thought a lot about things I’ve learned and things that I feel like I will be talking about, and teaching about, far into the future. And one of those things is the idea of sort of longer term effects after an acute viral infection. Particularly something we talked about on and off in a lot of episodes but the most prominently in episode 680 when we talked about long haul Covid with Mady Hornig, Fiona Lowenstein and David Tuller. And we got to hear about their experiences with long haul Covid and sort of ways that we might think about long term effects of viral infection.

One of the “positives” might be too strong a word. But one of the effects of a pandemic is that there are larger numbers of cases, and so sometimes rare events can be studied a little more easily and better understood. And I wonder whether these types of examinations, and these types of stories, will help us understand some other conditions where we might see some rare events of long term effects following other types of viral infections and because we’ve recognised and started to characterise this with long haul Covid, we might be able to help a lot of different patients in a lot of different situations.

We talked about one sort of possible paper with mechanisms about what could be going on in 683 with some pro-thrombotic autoantibodies that were in a paper. But I think that one thing that I'm kind of looking forward to as we go forward into 2021 is all of the ways that we might start to understand what’s going on in some of these cases in a way that could transform our understanding of viral pathogenesis and immune responses to viruses.

Dr. Vincent Racaniello
- For sure, well after this pandemic is over, people will work on this virus and learn fundamental things for years and years and years. Because it's so interesting.

Dr. Brianne Barker
- Exactly. And I really hope that there may be lots of patients including perhaps some of the ME/CFS patients who gets some answers because of these things that we’ve learned.

Min: 49.00 - 51.19

https://www.youtube.com/watch?v=NAW73day4rA

 

Not nearly as bad as I expected, I've seen far worse.

But this tells me what I have suspected for a while: that what will make the difference here is the sheer number of physicians who are themselves affected, on top of seeing people close to them being affected. They only speak through anecdotes here, but the number is surprisingly high. Talking about colleagues or friends they respect who they can't bring themselves to gaslight, even anonymously. Without this, nothing would have changed. If medicine had protected their own, it wouldn't have exposed this disaster, they would have kept on denying it.

Did you hear, though, folks? CFS doesn't happen anymore, it used to "happen", in that sometimes it's called that, but it doesn't anymore. It just happened periodically but it doesn't happen anymore, it's just hysteria that get repackaged periodically. According to these medical professionals anyway. Tens of millions of lives, completely erased, as if they never existed. The series of failures it takes to reach that level is simply mindboggling when you consider the outcomes.

It's really not ideal that medical professionals have to personally be affected by a certain type of disease for them to accept it may, just may, be true. This is really the whole explanation, the entire failure over the premise of what a profession is supposed to be: the opposite of that. This is frankly as absurd as civil engineering straight up not believing in rust. So damn out of place.

 

I dont know what the scientific term for it is but from what I remember from lectures on ethics, people are likely to have more empathy with people that look or are like them. It's terrible but it's human nature, I guess to navigate ingroup/outgroup and allocate ressources.

That's why some victims of crimes get so much more air time on TV than others, Noam Chomsky called it "worthy" and "unworthy victims".

Health care workers might be the more worthy LongC victims of the medical world.

 

The medical student who admitted they suffered from a prolonged post-viral syndrome did suddenly have their credibility reduced.

It seems that some physicians aren't even willing to believe their own.

 

I especially liked calling this "red flags".

What else is it supposed to look like? This is exactly what it looks like when someone has chronic symptoms that physician after physician dismissed. It literally cannot look like anything else because the chaos agent is the physicians, this is what it always looks like, whether the disease is never found or whether it is. It looks like this whether it's someone with a brain tumor, a rare genetic disease or because a surgeon left something in their body because their genius is too large to possibly contemplate using something as basic as a checklist.

Like giving someone fake food that is indigestible and arguing that the hunger must be fake since they keep coming back for more fake food. Because the only way they can get food is though this process where some jerk keeps giving them fake food. It literally will never happen any other way or look any other way.

I guess that's the whole point of the "sick role": it's how someone becomes an invalid narrator to their own experience and thus everything they say can be dismissed. It's not us doing that, it's those jerks. We want none of this, they force us into this, then are mad that it doesn't help us, something that it cannot possibly do.

Occam's razor >>>>>> Rube Goldberg's blunt mace of bluntness, the bluntiest object in the known, and unknown, universe

 

COVID-19 severity impacts on long-term neurological manifestation after hospitalisation

https://www.medrxiv.org/content/10.1101/2020.12.27.20248903v1

Not sure how they determined what symptoms to ask for. Always the limiting factor with symptoms that can't be measured.

 

That was the most interesting part. You see it with long Covid now too where they’re throwing their own under the bus. Even healthcare workers are disbelieved.

 

COVID-19 and chronic fatigue syndrome: Is the worst yet to come?
Peter Wostyn

https://www.sciencedirect.com/science/article/pii/S0306987720333600?dgcid=rss_sd_all


From the same author:
https://www.s4me.info/threads/the-p...hogenesis-and-therapy-2018-wostyn-et-al.5165/

 

Conflict of interest statement
Dr. Peter Wostyn is the inventor of pending patent applications pertaining to chronic fatigue syndrome treatment using cerebrospinal fluid diversion procedures.

 

This seems prematurely over-specific.

Edit: Looks like the comment above this one captures the problem

 

https://twitter.com/user/status/1346161873876643840

 

Covid-19 'not just about survival' warns Leeds health chief as hundreds in city face 'long Covid' impact

https://www.yorkshireeveningpost.co...-hundreds-city-face-long-covid-impact-3079917

Posting mainly for this:

No one is learning a damn thing out of sheer stubbornness. Nearly a year in and nothing to show for it. Circular failure.

 

it seems the medical profession have forgotten the term convalescence in the sense of forced rest to give the body the chance and resources to heal . this obsession with getting people back to work as soon as possible must stop all treatment should be about what is the best for individual patients not politically motivated drivel about rehabilitation . we are not offenders needing to re educated to fit in with what the government feels as acceptable time out to recover from illness or operations since every human being differs in the speed that they may recover.

 

If it's true that up to 10% of people face a long or very long recovery from Covid-19, the fact that the UK is heading rapidly towards reporting 60,000 new cases per day is terrifying. And that's only people who're symptomatic, or have enough reason to think they've been exposed that they come forward for testing. Thousands of new people each day who're likely to be incapacitated – some for weeks, some for months, and the unlucky ones possibly for good.

We're really going to have to come up with something a bit more effective than questionnaires and spending vast sums of public money on paying practitioners to deliver inappropriate interventions. Like admitting that we don't have any answers yet, and asking the GPs those patients will have to consult anyway to advise them to rest and pace, give them a fit note so they can access financial help, and signpost those who're not at risk of severe mental ill-health to good sources of information and online support. Why is minimising potential patient harm – and not spending money on unproven approaches that could be invested in actual research – so difficult?

I know I'm preaching to the choir, but..... !