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

Ah but nows there's FND to capture symptoms .....what could possibly go wrong

 

https://www.theguardian.com/commentisfree/2021/dec/23/omicron-covid-19-long-hauler

"Don’t dismiss Omicron as ‘mild’. Take it from a Covid long-hauler"

"After all, those of us living with post-viral conditions – such as ME/CFS, dysautonomia, postural orthostatic tachycardia syndrome (Pots) – are used to being ignored, disbelieved, or misadvised. We were on few radars before Covid; even now, the National Institutes of Health (NIH)‘s Recover Initiative on Long Covid has all but ignored post-viral researchers and sidelined patient advocates."

"As comrades in a terrible journey, people with post-viral conditions have shared all we have learned with people with long Covid – like the importance of resting and pacing instead of pushing through ME/CFS fatigue, and the jarring reality that ME/CFS has the lowest amount of NIH research funding relative to the burden of disease in the population."

 

I like this thread. It's a great thread. I really like this whole... uh... scientific thinking thing. It's a great thing, there should be more of that.

https://twitter.com/user/status/1473551781217153031


https://twitter.com/user/status/1473552677489491978


Notable that there is a layer beneath being gaslit by bad research, and it's being attacked as "anti-science" in the media for objecting to what is obviously sub-par pseudoscience. There's always a layer of worse beneath.

 

Yesterday someone asked a question on *drum roll* Ask Reddit and, surprise, it wasn't awful. But it's a general forum, so it respected the general tendency of the discussion being inversely proportional in quality to the number of physicians who have opinions on things they're not seeing with their own eyes.

The top-rated reply is mostly good, although it focuses a bit too much on classic ME, missing that the full picture of post-infectious illness also causes dysautonomia/POTS, chronic pain that would normally be diagnosed/dismissed as fibromyalgia and IBS-like symptoms, along with the weird array of neurological symptoms.

What do we know about Long-Covid (i.e. people who haven't had any measurable damage but feel like something is wrong in their body)?

 

A confused article that pretty much sums up the whole problem and also manages to miss everything significant about it. Two physicians discuss the overall problems with Long Covid and the problem of misinformation, not only unaware that most of the misinformation comes from medicine, but also literally doing that themselves later in the article.

Medicine is the main problem with its continued attachment to psychosomatic ideology, and this article is just the perfect expression of it, and clueless about it. It's precisely because LC is not a new thing that medicine is faceplanting again, and this is something raised in the article, but somehow fails to understands that a disease that is discriminated and denied simply has no chance of progress.

It also repeats the usual confusion about the NIH "investing" $1.15B, unaware or indifferent that this was made by Congress, but also somehow claiming that similar research efforts are happening elsewhere, which is simply false. The only other significant budget came from the UK NIHR and it added up to barely a handful of millions in actual research funding, the rest going to the exact misinformation claptrap that has failed this issue decades before it happened.

With respect, it's people like this who are the problem. They don't understand what is really happening and are contributing to the confusion by not seeing in which direction it points.


Long Covid is Pitting Patients Against Doctors. That’s A Problem.
https://undark.org/2021/12/23/long-covid-is-pitting-patients-against-doctors-thats-a-problem/

As a result, long Covid has drawn comparisons with so-called contested illnesses, such as myalgic encephalomyelitis (also known as chronic fatigue syndrome) and fibromyalgia, whose legitimacy are questioned by the medical profession.​

This is the whole problem in a nutshell, it's precisely not because it's new that it's completely dysfunctional, as if diseases whose legitimacy is disputed is some minor factor of little relevance and also completely passive.

But it would be unfair to say that the medical community has entirely dismissed long Covid. Substantial amounts of effort and funding are now being put into long Covid research. The National Institutes of Health has announced more than a billion dollars of new funding ​

The medical community literally did not do that, it was the work of activists and advocates that forced the only substantial research program, literally attributing to medicine the success of patient organizations. Amazing.

For now, however, the illness remains shrouded in unknowns, and there’s a legitimate concern that misinformation will fill in the gaps — as it seemingly has with almost everything Covid-19 related so far. Already, we have personally seen pseudoscientific groups claiming, without evidence, to have knowledge of how to treat long Covid.​

Yes, it's called the biopsychosocial model of illness, or sometimes just psychosomatic medicine, and it's in all the damn gaps, because hot air just gets everywhere it can fill.

Brain fog and cognitive difficulties may be treatable in some patients with cognitive therapy approaches.​

This is literally misinformation, this is simply not what brain fog is and here they are advising for a BS pseudoscience treatment, in an article trying to raise the issue of misinformation leading to useless treatments.

Fortunately, there are steps that can be taken to mend the budding rift between long Covid patients and health care professionals — hopefully in time to stop the wave of misinformation before it crests.
​

Words that would have been significant 5 decades ago, and ring completely hollow today, things are even worse than ever precisely because of decades of hostile behavior towards us, making it impossible for medicine to save face and just move on already.

Having a chronic illness is frustrating. People suffering with long Covid are right to feel impatient with what is, in many ways, a broken medical system.
​

But here it's not the broken medical system that chronic illness sufferers have always faced that they think of. Because they are completely unaware of just how broken health care already was for chronic illness, and the main reason why all the same failures are happening again, including this article, which mostly whitewashes the real issues and points elsewhere, anywhere but where the blame lies.

It's seriously weird how they basically point to all the problems, yet are unable to actually acknowledge them as by far the most significant part.

 

Ironically, in an article warning against misinformation, they say this

The irony is that the study they link to is this one that has attracted a lot of criticism for inaccuracies, Association of Self-reported COVID-19 Infection and SARS-CoV-2 Serology Test Results With Persistent Physical Symptoms.., 2021, Matta et al

 

I remembered one of the authors there, David Scales, had written this piece citing Tuller: https://www.cjr.org/analysis/lyme-disease-contested-illness-empathy.php

 

Multisystem Involvement in Post-acute Sequelae of COVID-19 (PASC)
https://onlinelibrary.wiley.com/doi/10.1002/ana.26286


Objective
To describe cerebrovascular, neuropathic and autonomic features of post-acute sequelae of COVID-19 (PASC).

Methods
This retrospective study evaluated consecutive patients with chronic fatigue, brain fog and orthostatic intolerance consistent with PASC. Controls included postural tachycardia syndrome patients (POTS) and healthy participants. Analyzed data included surveys and autonomic (Valsalva maneuver, deep breathing, sudomotor and tilt tests), cerebrovascular (cerebral blood flow velocity (CBFv) monitoring in middle cerebral artery), respiratory (capnography monitoring) and neuropathic (skin biopsies for assessment of small fiber neuropathy) testing and inflammatory/autoimmune markers.

Results
Nine PASC patients were evaluated 0.7±0.3 years after a mild COVID-19 infection, treated as home observations. Autonomic, pain, brain fog, fatigue and dyspnea surveys were abnormal in PASC and POTS (n=10), compared to controls (n=15). Tilt table test reproduced the majority of PASC symptoms. Orthostatic CBFv declined in PASC (-20.0±13.4%) and POTS (-20.3±15.1%), compared to controls (-3.0±7.5%,p=0.001) and was independent of end-tidal carbon dioxide in PASC, but caused by hyperventilation in POTS. Reduced orthostatic CBFv in PASC included both subjects without (n=6) and with (n=3) orthostatic tachycardia. Dysautonomia was frequent (100% in both PASC and POTS) but was milder in PASC (p=0.013). PASC and POTS cohorts diverged in frequency of small fiber neuropathy (89% vs. 60%) but not in inflammatory markers (67% vs. 70%). Supine and orthostatic hypocapnia was observed in PASC.

Interpretation
PASC following mild COVID-19 infection is associated with multisystem involvement including: 1) cerebrovascular dysregulation with persistent cerebral arteriolar vasoconstriction; 2) small fiber neuropathy and related dysautonomia; 3) respiratory dysregulation; 4) chronic inflammation.

 

At least two of the authors (DS & DF) are involved in ME/CFS research


Peter Novak MD, PhD, Shibani S. Mukerji MD, PhD, Haitham S. Alabsi MD, David Systrom MD, Sadie P. Marciano PA-C, Donna Felsenstein MD, William J. Mullally MD, David M. Pilgrim MD
First

 

Long Covid: 'I have to choose between walking and talking', https://www.bbc.co.uk/news/uk-england-beds-bucks-herts-59584146

This post has been coped and discussion moved to this thread

 

Al Jazeera A world forever transformed: Life with Long COVID

Quote:
There is vulnerability, too, to the aftershock of Long COVID, to suffering from a disease that appears on medical records like a specter. Is it there? Can we prove it? Long COVID’s symptoms are amorphous, its timeline indistinct. There exists no scientific explanation for why some may develop it while others may not. (For her part, Meg had no risk factors associated with a severe manifestation of the virus.)

What is left, she said, is a world forever transformed, a world where she wonders if she should stop trying so hard. This is her new reality, formed from one virus, one moment, one November a year ago. “I think a lot of parts of it will get under control,” she said of Long COVID. “But the fog and the word searching… I really question if that will ever get better.”

 

https://twitter.com/user/status/1475419271866068997

https://twitter.com/user/status/1475419279432507398


Clearly we must get everyone out of hospitals, people keep dying in there! They're death traps!

It really needs to be emphasized how completely dysfunctional things are when common sense guesses from complete amateurs are usually much closer to reality than experts' advice. It's completely abnormal, simply does not exist in any other profession. Great plan to build an alternative model of health care based on the complete absence of common sense, science and critical thinking. Genius!

 

British Journal of Anaesthesia has published a pre-proof paper titled "Impaired systemic oxygen extraction long after mild COVID-19: potential preoperative implications.
The paper is paywalled, but prof. Akiko Iwasaki commented on Twitter:

In #longCOVID patients, “exercise capacity was primarily limited by impaired systemic EO2 of such severity that what should have been an adequate increase in DO2 was insufficient to allow for an increase in VO2.” Via
@YalePCCSM

So the problem in #longCOVID is not necessarily O2 supply (thus normal cardiopulmonary function) but O2 extraction and thus consumption by tissue. What could cause such defects? Microvascular abnormality? I would love expert input here.
@KaminskiMed
, @CharleszYaleMed?

This paper has its own thread here.

 

Clearly not a BPSer then, "we have spoken, no further comment needed, expert or otherwise".

 

https://www.stgeorgeutah.com/news/a...s-with-long-haul-covid-symptoms/#.YcyBIxPMLPh

‘We’re not the same people’: Southern Utahns, others share struggles with long-haul COVID symptoms"

"Medical professionals like Yellman call this condition a form of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). The Associated Press, in its stylebooks provided to journalists to maintain consistent prose, call it long COVID-19. But those who deal with it use a term previously reserved for truckers who may spend days pulling the weight of cargo across the country.

They call themselves long-haulers."

"The symptoms can also get worse after minimal physical or mental exertion – a state known as post-exertional malaise (PEM)."

"The long COVID-19 patients St. George News talked to all shared in Young’s frustration of finding a doctor who could help them. They said it wasn’t as much doctors not believing they were actually going through something; but rather, doctors don’t quite know how to deal with it."

And Yellman said you can’t blame the doctors for that, adding that many doctors have never even heard of myalgic encephalomyelitis/chronic fatigue syndrome.

“I spent nine years in medical training. I was not once educated on this syndrome,” Yellman said. “When you go into your doctors and they don’t know what to do, it’s not their fault. They’re not taught what to do.”

"Dr. Yellman said what medical professionals didn’t know until recently was that the medical – and characteristically American – tendency to fight back and use physical therapy to get right back to “normal” after having a mild case of COVID is actually the worst thing to do."

“Working through PEM can cause worse things. You have to surrender to it,” Yellman said, acknowledging that doing so is a culture shock that goes against the typical “don’t give in” pioneer spirit of Utahns."“Looking at this as something we push through is the wrong thing to do with long COVID.”

"Not every person who has ME/CFS has had COVID, but Yellman said just about every patient he has seen with long COVID has ME/CFS. And Yellman adds that 40% of people with ME/CFS can develop an even worse syndrome called postural orthostatic tachycardia syndrome (POTS)."

 

Ooof, that bullshit will have a very short shelf life. The not believing part is what lead to not knowing how to deal with it, in large part because of decades of affirming that this is already dealt with by generally BSing about it. And none of it was passive, there have been so many opportunities and it's even failing all over again for those same reasons.

But of course medical doctors should be blamed for this, at least the profession as a whole and its institutions. Who teaches new doctors? Other doctors, of course. Literally make all the curriculum and do all the teaching. What kind of passive nonsense is this? It's exactly refusing to teach it, to understand it, to research it, explicit decisions made thousands of times over decades, that lead us here. It's not as if medical education was handed down from an unseen force.

Individual physicians obviously have extenuating circumstances but those were always self-fulfilling. However medical institutions deserve not just massive blame but are in fact directly and wholly responsible for this. Decades of BSing about mind-body this and "the physical symptoms of depression" or repressed trauma won't be swept as if it was just a slight misunderstanding. None of this was passive.

You want the power to coerce people to do something that is good for them? Well that comes with a whole of heavy-handed accountability and when it has been willfully decided to ruin tens of millions of lives, then that accountability has to be comparable in size and scope to an investigation into the deliberate detonation of a large nuclear bomb in a large city, all approved and with signed paperwork.

Just because those lives were destroyed over decades and scattered all across the world doesn't change anything as far as outcomes go. There is more than enough recorded evidence that this was known and simply denied and ignored for absolutely no valid reason. It's enough to have ruined millions of lives, the suffering endured will not be insulted by such "don't ask me, I just work here" nonsense.

 

I'm posting this tweet b/c this women got reinfected with Covid (has long Covid) from going for an eye exam.

https://twitter.com/user/status/1476437527171006468

 

https://twitter.com/user/status/1476311734839398405