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

My understanding is that in POTS, in general and not ME specific, heavier muscle in the lower leg can decrease symptoms to some extent. So far as I am aware this was never tested on ME patients.

 

If this theory of slow deconditioning was correct and the entire story, and I have written this many times now, our sudden short term remissions would direcdtly imply that we can go from deconditioned to conditioned to deconditioned in just a single day.

 

I could not a find a single word about how this is a phenomenon that has been known for decades and is known to have already affected millions. Amazing how medicine can build two independent definitions of the same thing and be stuck in pervasive refusal to acknowledge it.

Notice at some point the Cochrane rehabilitation logo, here one hand of the organization making recommendations that another hand is actively fighting. What an incredible mess this all is.

Two threads with definitions and main points about Long Covid from the WHO:

https://twitter.com/user/status/1445762903739539464

https://twitter.com/user/status/1445729818704637962

 

People With Long Covid Are Risking Their Health Going Back to the Office
https://www.rollingstone.com/culture/culture-features/long-covid-19-office-disability-1237587/

In fact, for more than a century, medical professionals have observed and documented post-viral illnesses — with many neurocognitive symptoms comparable to those associated with long Covid. For example, post-infectious neurological conditions referred to as neurasthenia or “nerve exhaustion” were reported among those who fell ill during the influenza pandemics of 1889 and 1892. And each wave of the 1918 flu pandemic brought with it subsequent diagnoses of parkinsonism, catatonia, and “encephalitis lethargica” among people previously infected by the virus.

More recently, people with invisible illnesses and chronic conditions like myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and fibromyalgia have put in decades of patient-led research, advocacy, and policy work — much of which, for a variety of reasons, policymakers and employers have largely ignored. Many of the challenges people with long Covid now face in the workplace are the same ones people living with chronic illnesses have been requesting accommodations for and navigating for years. And while any progress in this area — including a better understanding of disability — would be welcome, it shouldn’t require a pandemic to prompt that kind of policy change.​

 

Amazing that post-exertional symptom exacerbation, first proposed in the NICE ME draft guidelines that are rejected by the NHS and the colleges, will have found its way onto NHS clinical care for Long Covid while being aggressively rejected for ME. Just amazing.

Although of course the last page is wildly problematic considering that most people can't just take a whole year or more off without pay or support at home, it's just completely unrealistic and still leaves most with basically no help.

https://twitter.com/user/status/1445802224563613702

 

Is there a link available to that WHO Post-covid 19 condition interim guideline mentioned in that tweet? I tried to look it up and couldn't find it. Is it something that has yet to be published and that was a quick peek in advance?

 

You replied in the thread but just for others' sake: discussion of the WHO "post-covid 19 condition" in this thread: https://www.s4me.info/threads/who-a...ovid-19-condition-by-a-delphi-consensus.22688.

 

I saw that but couldn't find this there. There are symptoms in that guideline tweet that are not mentioned in the case definition publication at all (not even as "other symptoms" like PEM): orthostatic intolerance, POTS (only "tachycardia" is mentioned), but also things like dysphagia. So I was curious but maybe this was just some slide in the webinar. I'll check it when they upload it.

 

Political leaders pay a lot of attention to the WSJ, at least the news side. Paywalled so putting a screenshot instead. (Actually WSJ is usually paywalled but this one appears to be open access so try it).

https://twitter.com/user/status/1446102060215128077

 

On Taking Long COVID Seriously

There was a time when doctors and patients inhabited a nearly “silent world,” as famously described by physician-educator Jay Katz in his 1984 book of the same name. In those days, communication ran in only one direction and trust was expected only in the other. Doctors explained things and patients listened quietly, to be followed by grateful compliance. Fortunately, medical schools have emphasized mutual communication and things have gotten much better. Doctors and patients now work together, forming a relationship in which the patient’s input is sought and experiences valued. But not always. Physicians’ receptivity turns out to have its limits, perhaps never more so than when patients organize around a demand for greater recognition.

Consider, for example, a recent New Yorker article by Dr. Dhruv Khullar, a faculty member at Weill Cornell Medical College, titled “The Struggle to Define Long COVID.” After allowing briefly that there is “little doubt among researchers that long COVID exists,” Khullar devotes much of the balance of the 6,000-word essay to his own considerable doubts about various patients’ conditions, especially those involved in patient-advocacy groups.

https://www.socialsciencespace.com/2021/10/on-taking-long-covid-seriously/

 

A medical mystery, the neurology of long COVID comes into focus

An article about the theories surrounding long covid, with occupational medicine specialist Dr. Greg Vanichkachorn, medical director of the COVID-19 Rehabilitation Activity Program at Mayo Clinic.

Excerpts:

One emerging area of interest seems to be the role of the body's essential hardware that is the autonomic nervous system, including its ability to go haywire for patients with comparable mystery syndromes such as myalgic encephalomyelitis, POTS and central sensitization.

"It seems to be a much more of a neurological condition than we anticipated," says Vanichkachorn.

"One of the things we are worried about is central sensitization," he adds. "Which is where the body becomes more sensitive to stimuli, and some of those stimuli become more painful than they should be. That may sound like a fancy way to say it's all in a person's head, but what we are talking about is an actual rewiring of how the brain is interpreting impulses from the skin and the limbs."

(...)

Other research is considering the role of a speculative autoimmune house of cards at work in long COVID, one in which antibodies can strike at an enzyme that helps the body to lessen inflammation, causing pain. "If there are antibodies that we're making against this enzyme," he says, "that can lead to a wide variety of symptoms like we see in long haul COVID."

"I think there is an autonomic neuropathy issue underlying many of these patient symptoms ... It does seem very similar to conditions like chronic fatigue syndrome and fibromyalgia, but I think it's too early to put all these things together in one combined diagnosis."
​

Full article: https://www.duluthnewstribune.com/n...-the-neurology-of-long-COVID-comes-into-focus

 

My rewiring would definitely get my foot kicking in hearing that kind of stuff.

 

https://twitter.com/user/status/1446818234942963721

 

That would explain it literally be classified as a neurological disease with primarily neurological symptoms.

Not gonna lie, this is borderline a "you mean the files are IN the computer?" moment. Do words mean anything at all in this profession? Or are they all fungible and mean whatever is convenient at the moment?

 

Covid: Anti-vax protesters intimidate teen outside jab centre

https://www.bbc.co.uk/news/uk-wales-58856068

 

A swing...

https://twitter.com/user/status/1446831668048941063


and 2/3 misses

https://twitter.com/user/status/1446832634223529985


Literally 2 of the biggest deniers (regardless of Greenhalgh's early work, she has since checked out of the issue upon seeing it's mostly something she can't accept exists).

 

https://twitter.com/user/status/1446944817901182977

 

Haaretz The New Frontier: Israeli Hospitals Contend With 'Long COVID' in Children

quote:
“What’s interesting, is that in some of the children, it really appears as a direct continuation of severe illness but in very many of the children, there is a severe illness, followed by a lull of several months and only then do the symptoms of long COVID begin," says Ashkenazi-Hoffnung.

According to her, the persistence of the symptoms varies. “There are children for whom it takes half a year or more. For example, we had a boy here who was a competitive swimmer and came down with long COVID and was very anxious and in pain. After half a year he went back to swimming and even broke a personal record."

However, she also says that there are "a few children here who, a year after the illness, haven’t recovered, and they have symptoms that are affecting their day-to-day functioning. There are cases in which it lasts for more than a year.”