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

[Wyva]

I don't think she is demonstrating much insight here (which is the polite version of what she has put here.

Who is forcing them there? I might be missing something here...

Edit: hopefully BPS people won't build this into their narrative and start saying ME/CFS campaigners literally favour the killing of covid survivors with their attitude... /sarcasm

 

[petrichor]

I get the impression in regards to the history/context of the terms "Myalgic Encephalomyelitis" and "Chronic Fatigue Syndrome", it isn't as simple as CFS=Psychiatric and ME=Non-Psychiatric. I think ME may have had an association with hysteria (there was that famous article where two psychiatrists concluded it was hysteria), and CFS was a kind of compromise amongst a number of parties in order to subsume a variety of different terms that came before it (although psychiatrists liked the term)

There are likely people here that know more about this than me though

 

[mango]

The Royal Swedish Academy of Sciences (Kungliga Vetenskapsakademien/KVA) published a report on covid-19 last week.

English: Academy report proposes an independent expert unit for pandemics

Swedish: Vad kan vi lära av pandemin? Kunskapsöversikter från Kungl. Vetenskapsakademiens expertgrupp om covid-19

In an interview with Life Science Sweden, prof Jan Nilsson (member of KVA's expert group, MD/consultant, professor of cardiovascular research, immunity and atherosclerosis) made the following statements:

He also addressed post-covid, long covid, and talked about the major problem it poses for many people. He believes that, unlike the acute cases, the health service has failed in many respects and that many patients in this group have not received the support they needed. [...] he stresses the importance of research into long covid.

- It is extremely important that we can conduct research to clarify what the causal links are, how we can make a diagnosis and, above all, how we should treat these symptoms," he says.

Much is still unclear about the causes of postcovid, but one possible explanation is that there are autoimmune reactions that cause the symptoms. Another hypothesis is that there are residual infections that are attacked by the immune system after the infection. This in turn can lead to chronic inflammation, according to Jan Nilsson.

One theory that has been put forward by some doctors is that post-covid should be largely explained by psychological causes and there has been talk of a cultural illness. This has been countered by the Covid-19 Patients' Association, which has pointed out that many members find these claims offensive. Jan Nilsson is clear that the theories of psychological causes for the symptoms are not something he or the Academy of Sciences expert group endorses.

- It is bad to spread such preconceived theories when we still know so little about the causes of the symptoms, he says.

 

[Dolphin]

 

[Dolphin]

 

[Mij]

Cognitive Rehab:

In July, she began throwing herself into several sessions a week at Shirley Ryan AbilityLab, a rehabilitation center that for years has helped patients with brain injuries, strokes and other conditions. It has so far treated about 600 Covid patients.
There is an occupational therapist, physical therapist and speech-language pathologist that Ms. Lewis exercises to strengthen her memory, concentration, balance and endurance.

Since for some patients physical or cognitive exertion exacerbates symptoms, Dr. Roth said the AbilityLab urges patients to “push themselves as much as they can, but not beyond.”

https://www.nytimes.com/2021/12/03/health/long-covid-treatment.html?smid=tw-nytimes&smtyp=cur

 

[5vforest]

I don't think she is demonstrating much insight here (which is the polite version of my reaction to what she has put here).

She keeps writing "chronic fatigue" and "a chronic fatigue syndrome".

Looks like just another person who has gotten hung up on the nomenclature and now cannot see the forest for the trees.

Thankfully, I doubt she wields any actual influence.

 

[rvallee]

Jan Nilsson is clear that the theories of psychological causes for the symptoms are not something he or the Academy of Sciences expert group endorses.

- It is bad to spread such preconceived theories when we still know so little about the causes of the symptoms, he says.

Well that's clearly false, they do endorse this and have for decades, when you remove the context. Here they are challenged by the events, that's the only thing that changed. But they do endorse this, in full, based on preconceived theories and use those in standard practice, coercively even, despite thousands literally begging them not do it, then begging them to stop doing it.

Pretending otherwise is simply dishonest and means paralysis, because this is currently the only reason it's happening yet again. It's basically completely ignoring the context. Context matters a lot, in fact it's what matters the most, because the entire process of psychosomatization is to remove all context and do the preconceived nonsense thing, as usual.

If they can't be honest about the past and the present, how could they possibly be honest about the future?

 

[Wonko]

It may have been an honest mistake at the start, but there is no way they can claim that now.

Given that ME existed as a diagnosis at the time, matching the symptoms, but rather than use it, 'they' decided to invent CFS, which did not match the actual symptoms, it seems unlikely that this was an honest mistake.

 

[Sean]

Given that ME existed as a diagnosis at the time, matching the symptoms, but rather than use it, 'they' decided to invent CFS, which did not match the actual symptoms, it seems unlikely that this was an honest mistake.

I agree. Just saying that even if they had started with honourable intentions, that excuse was long ago forfeited.

 

[mango]

As far as I know, this ad (video, 15 seconds, in Swedish), published 2 weeks ago, is the very first time the Public Health Agency of Sweden mentions "risk of long-term symptoms after infection", in any of their public communications about the whys of covid-19 vaccinations and other infection control measures.

(ETA: The video was published only 2 weeks ago.)

 

[rvallee]

I've seen a few mentions lately that some health insurers and clinics are requiring CPET as a standard assessment for LC, based on its relevance in ME. Nevermind that the logistics of this are absolutely out of whack with reality. At best what this would do is create a logjam of cases that just pile on indefinitely, which really sounds like the whole point. This is far too invasive and costly and it does not scale, it's strictly linear and I doubt it's 1:1, probably more of a 2:1 or even 3:1 ratio of health care workers/patient.

More importantly, there is zero chance this will be done safely. Too many deniers to begin with, but also health care systems are completely unequipped to deal with this, would not even recognize significant deteriorations, let alone do anything to help make up for having intentionally harmed with no clear purpose. This isn't like chemo where it's the least bad choice and is actually curative, there is no upside to this outside of a research setting.


Use of Cardiopulmonary Stress Testing for Patients With Unexplained Dyspnea Post-Coronavirus Disease
https://pubmed.ncbi.nlm.nih.gov/34857177/

Objectives: The authors used cardiopulmonary exercise testing (CPET) to define unexplained dyspnea in patients with post-acute sequelae of severe acute respiratory syndrome-coronavirus-2 (SARS-CoV-2) infection (PASC). We assessed participants for criteria to diagnose myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

Background: Approximately 20% of patients who recover from coronavirus disease (COVID) remain symptomatic. This syndrome is named PASC. Its etiology is unclear. Dyspnea is a frequent symptom.

Methods: The authors performed CPET and symptom assessment for ME/CFS in 41 patients with PASC 8.9 ± 3.3 months after COVID. All patients had normal pulmonary function tests, chest X-ray, and chest computed tomography scans. Peak oxygen consumption (peak VO2), slope of minute ventilation to CO2 production (VE/VCO2 slope), and end tidal pressure of CO2 (PetCO2) were measured. Ventilatory patterns were reviewed with dysfunctional breathing defined as rapid erratic breathing.

Results: Eighteen men and 23 women (average age: 45 ± 13 years) were studied. Left ventricular ejection fraction was 59% ± 9%. Peak VO2 averaged 20.3 ± 7 mL/kg/min (77% ± 21% predicted VO2). VE/VCO2 slope was 30 ± 7. PetCO2 at rest was 33.5 ± 4.5 mm Hg. Twenty-four patients (58.5%) had a peak VO2 <80% predicted. All patients with peak VO2 <80% had a circulatory limitation to exercise. Fifteen of 17 patients with normal peak VO2 had ventilatory abnormalities including peak respiratory rate >55 (n = 3) or dysfunctional breathing (n = 12). For the whole cohort, 88% of patients (n = 36) had ventilatory abnormalities with dysfunctional breathing (n = 26), increased VE/VCO2 (n = 17), and/or hypocapnia PetCO2 <35 (n = 25). Nineteen patients (46%) met criteria for ME/CFS.

Conclusions: Circulatory impairment, abnormal ventilatory pattern, and ME/CFS are common in patients with PASC. The dysfunctional breathing, resting hypocapnia, and ME/CFS may contribute to symptoms. CPET is a valuable tool to assess these patients.
​

 

[rvallee]

Here explicitly advised:

Cardiopulmonary Tests Urged for Lasting Fatigue, Dyspnea After COVID-19
https://www.tctmd.com/news/cardiopulmonary-tests-urged-lasting-fatigue-dyspnea-after-covid-19

But for now, guidelines for managing the chronic phase of COVID-19 should include use of CPET, Mancini suggested, adding that testing can be safely performed even in patients with severe symptoms.​

No, it cannot, and this says everything about why. They simply do not recognize the impact of what they are doing.

 

[Sly Saint]

Sigh. I seem to recall that Dr. Teitelbaum cured himself of CFS. He sells books and supplements.

This Sugar Cured One Woman’s Long Covid Symptoms

Tammy began searching for options and discovered an online interview with energy specialist and internist Jacob Teitelbaum, M.D., author of From Fatigued to Fantastic! , in which he cited D-ribose supplements having been found to restore energy in people suffering from chronic fatigue.

D-ribose, Tammy learned, is a simple sugar found naturally in our bodies. When consumed, it is preserved by the body for the vital work of making the energy molecule that powers our heart, muscles, brain and other tissues. One study she read showed that taking D-ribose for just one week stimulated energy recovery by 45 percent.

https://www.womansworld.com/posts/natural-health/long-covid-natural-cure

 

[rvallee]

It turns out that letting a new virus rip through the population without a care for consequences? Not a smart idea. Who could have known? It also says a lot about the impact of socioeconomic status in regards to health, how it directly ties to health outcomes, that being poor may pretty much be the most significant risk factor.

I don't remember how caring for the patients was counted in PACE's economic analysis. I remember it was poorly done. This is what it really means to have millions of people too sick to function normally. This of course includes more severe cases but there's no real reason to separate them. This is in the USA.

 

[Dakota15]

https://nyunews.com/news/2021/12/08/patient-group-raises-concerns-over-langone-long-covid-research/

"Patient group says Langone long COVID research forgets patients"

“The past experiences and expertise of people with disabilities must not be erased the moment they become sick,” Misko said. “Long COVID-19 patients are smart enough to see past the performative acts and claims made of patient involvement by the NIH. They are, so far, not listening to the important recommendations of prominent patient advocacy groups. We need the NIH to match their words with actions.”

 

[rvallee]

Where Are the Workers? Millions Are Sick With ‘Long Covid.’
https://www.barrons.com/articles/labor-shortage-workers-millions-sick-long-covid-51638923422

Dr. Schluger offers some hope for those afflicted with long Covid, and thus for the labor force. It may take a year or more, but symptoms mostly will resolve for many patients, he says. That could mean that more people, especially women, will return to work in time, and that some early retirees will boomerang back into the job market as they recover, giving a significant if delayed boost to labor-force participation. ​

There is so obviously a clear lack of understanding for what it means for this process to be ongoing. Infections are not stopping, if anything herd immunity is being pursued more than ever. It means it will not be going down, as some recover, others are falling ill and it just goes on and on and on. There is a threshold at which new cases of LC overtake the recovery process, and no one knows what it is, and no one would recognize it if we hit it.

Medicine deals with discrete events: accidents, injuries, infections. Everything else is psychosocial, made irrelevant. The whole thing just falls apart when it becomes serialized, chronicity is basically medicine's kryptonite. It's hard to understand how anyone can genuinely think this is good news and simply fail to understand the broader implications, the thinking here assumes that cases will die down, I have no idea based on what, other than hopium.

This is what specialist thinking does, it's too narrow and focused on a few targets, oblivious to externalities and opportunity cost. There has to be people able to see the big picture here, the experts making the decisions are knee-deep into their own tiny place of work, no one works on seeing the whole. As statements, it's very clear to "actually, climate change offers many opportunities". It's terrifying to see how little thinking has adapted to circumstances.

 

[rvallee]

“The past experiences and expertise of people with disabilities must not be erased the moment they become sick,” Misko said. “Long COVID-19 patients are smart enough to see past the performative acts and claims made of patient involvement by the NIH. They are, so far, not listening to the important recommendations of prominent patient advocacy groups. We need the NIH to match their words with actions.”

This is especially awful considering how they keep saying that LC research should help us so it's OK to not bother doing anything more specific to us. The NIH are clearly explicitly refusing to follow the evidence, would rather not find what they will.

It's so disrespectful to all of us, and equally so. It's explicitly sabotaging both efforts because, let's be clear here, it's a taboo subject, like in the old days, just something you don't talk about and never allow to be validated. This is closer to how an organized church controls its domain. Awful awful awful.

 

[rvallee]

As I feared, it looks like the combination of "more infectious but less deadly" will be used to spur yet another round of "maybe herd immunity will work this time". Basically the worst case scenario where far more people are ill but health care systems are completely unaware of it because there are fewer hospitalized people (although that remains to be seen).

This complete inability to learn lessons is beyond absurd. I don't get it, I guess the hopium is just too strong to put down. Or because no one ever faces consequences for being wrong, if anything they are always asked to do it all over again and again. I'm starting to think that one of the Great filters may just be pure naïveté, how simple-but-wrong solutions to complex problems are just too enticing to pass, and one of those will just be too much.




(Nevermind ZeroHedge, I don't doubt the quote is legit, Scandinavian countries are especially high on this)

 

[rvallee]

Can't read, paywalled.

Edit: apparently this is featured above the fold, i.e. on the top half of the front page on the printed edition. It's the main story on the site right now.