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

https://twitter.com/user/status/1443865232389165084

 

Time Can Breakthrough Infections Lead to Long COVID? For an Unlucky Few, Yes

Quote:

“Deaths and severe disease and hospitalization are…understandably what we are focused on. But Long COVID is an absolutely debilitating disease,” Iwasaki agrees. “It’s really been ignored to a large extent, and I really don’t understand why.” She says better tracking of breakthrough infections, as well as follow-up surveys that track patients’ symptoms over time (like those used in the recent Lancet study), could help increase understanding of Long COVID and the risk it poses to U.S. public health.

Without that understanding, people who develop chronic issues after a breakthrough infection, like Zaleski and Kern, may be overlooked and left out of crucial efforts to develop treatments. The National Institutes of Health has earmarked more than a billion dollars for Long COVID research—but for it to be most effective, it needs to include a diverse, representative group of people.

Nichols also says health officials should look to the past, drawing on the lived experience of people who developed other post-infectious chronic illnesses, like myalgic encephalomyelitis/chronic fatigue syndrome and chronic Lyme disease, to understand how to support Long COVID patients. Better access to specialized treatment centers; funding for patient-led advocacy and research groups; and collaboration with the entire chronic-disease community would all be good places to start, she says.

 

Long haulers unite! One thing the delays to the NICE guidelines process have done is that there are far more long haulers who understand we're all in this together. Of all the things the BPS ideologues and the colleges have factored in, this is not one and it may surprise them a bit, or a lot.

After a while, people stop expecting help from coming and, yes, justifiably, become more militant. And that's a good thing, because a small group of people challenging a broken status quo is how every single thing has changed. And it's been a long while by now.

https://twitter.com/user/status/1444041322273427463

 

https://www.ichpnet.org/
Illinois Council of Health-System Pharmacists
https://www.ichpnet.org/events/annu...emenway_Alice_-_Post-Acute_Sequelae_-_4up.pdf

Post‐acute Sequelae of COVID‐19 (long COVID‐19): What Treatments are Being Used and Why
Alice N. Hemenway, PharmD, MPH, BCIDP, BCPS
Clinical Assistant Professor University of Illinois Chicago College of Pharmacy Rockford, IL
September 23, 2021

Slides include quite a bit of information about ME/CFS, including quoting the NICE guidelines.

 

The Atlantic has printed an excerpt from Ed Yong's introduction to the coming book The Best American Science and Nature Writing 2021

Ed Yong: What Even Counts as Science Writing Anymore?

quotes:

The best science writers learn that science is not a procession of facts and breakthroughs, but an erratic stumble toward gradually diminished uncertainty; that peer-reviewed publications are not gospel and even prestigious journals are polluted by nonsense; and that the scientific endeavor is plagued by all-too-human failings such as hubris.

...
To the extent that the pandemic has been a science story, it’s also been a story about the limitations of what science has become. Perverse academic incentives that reward researchers primarily for publishing papers in high-impact journals have long pushed entire fields toward sloppy, irreproducible work; during the pandemic, scientists have flooded the literature with similarly half-baked and misleading research. Pundits have urged people to “listen to the science,” as if “the science” is a tome of facts and not an amorphous, dynamic entity, born from the collective minds of thousands of individual people who argue and disagree about data that can be interpreted in a range of ways. The long-standing disregard for chronic illnesses such as dysautonomia and myalgic encephalomyelitis meant that when thousands of COVID-19 “long-haulers” kept experiencing symptoms for months, science had almost nothing to offer them.

 

I hate that even though thousands of people saw this coming, the worst-case scenario still happened because no one who can do something about it listened, an ongoing problem caused by the initial failure to listen, it's too embarrassing to admit having missed the obviously predictable. Literally thousands, likely many tens of thousands, predicted this and tried to avoid the worst, but the people in charge of responding to this are incapable of doing so, because of myth and tradition. Sickening, literally.

It's truly amazing seeing how predicting the future makes no difference to someone's credibility when they've been ostracized enough that no one listens to us. Even in medicine, being right almost makes no difference, it's all about displacing interests benefiting from stagnation, if that can't be achieved the truth will remain locked in a drawer somewhere. Of all the issues where one would think the truth would be absolute and, nope, not even a little bit, people can truly look at a bunch of trees and remain convinced it's not a forest, will even insist so no matter how many people suffer from it, even if it's literally their job to avoid suffering.

https://twitter.com/user/status/1444360313198063622

 

I saw this today. I was troubled by the way these results are presented. It's fine to present the data that most people appeared to report benefit and some people became worse. But you can see from the phrasing how desperate they are to ignore the latter experiences. It's unscientific.

 

Imagine having an illness that is so ignored and neglected that even after a massive outbreak of this illness, society and the medical profession claim that they'd "never seen anything like this before".

What's worse is that they then invented an entirely new name for what you'd suffered from for decades.


ETA: and to rub salt into the wounds, patients with this new illness then appropriated terms from your illness (eg, PEM, brain fog) to describe their symptoms with no attribution.

I even saw a thread on reddit a few days ago from Long Haulers claiming to have discovered pacing using heart-rate monitoring.

 

Article from a Danish new site about medicine and health on Long Covid. It interviews doctors who are working on rehabilitating Long Covid patients. They seem to describe PEM and have realised that classic rehabilitation doesn't work and that they have no real treatment to offer. But they still believe in careful exercise. ME is mentioned briefly as something patients have read about and believe they might have, but Long Covid is presented as a brand new condition.

Ugeskriftet Senfølger efter COVID-19 trækker i langdrag: "Det er invaliderende, og patienterne er desperate"
google translation: Late sequelae of COVID-19 drag on: "It's disabling and patients are desperate"

Quotes:

Patients seem a bit like an old cell phone with a tired battery. They only work for a very short time. In the severely affected patients with late sequelae after COVID-19, fatigue is the predominant symptom, and for some, the debilitating fatigue persists. Where in the beginning there was talk of months, recent research suggests that the late effects may last this year.

...
“It’s pretty massive with a lot of them. Their jobs are threatened and they are terrified of their future. They can read and orient themselves, and they can see that it looks like ME. But what has really made a positive difference for many of our patients is that physiotherapists and occupational therapists have come on the scene with effective rehabilitation programs. It takes patience, but it can help many of our patients, ”

...
“Just over a month ago, we published a study that is based on muscle biopsies on patients. It showed that half have changes and injuries in their muscles, which may explain the violent exhaustion in both the brain and muscles. We believe that there may be an autoimmune or autoinflammatory condition in which the immune system is going to damage the cellular energy metabolism in the mitochondria. It can also explain why we see more women with late effects, since it is primarily those who are affected by autoimmune diseases, "says Lars Østergaard.

For him, it is a completely extraordinary situation to be in as a doctor and researcher. For it is extremely rare that a new disease occurs in medical science.

 

It is so much easier to research a new disease. You don't have to bother with all the tedious business of reading the existing literature.

 

It's not surprising, ME has been dismissed and described as 'mysterious' for decades. Just sweep it under the rug and look the other way.

The shocked expressions of news reporters/journalists when interviewing LC patients and how they felt misunderstood and dismissed was interesting to watch.

 

Please buy my common cold-healing crystals in bulk. They work 100% of the time, as long as you give them long enough to work. It could take years, but as long as you hold my healing crystals in your hand, eventually your common cold will be over. And that means they work 100% of the time. As long as you don't define work, or time, or %.

It's pathetic how common it is in medicine to take credit for the passage of time. I have a feeling that a significant % of standard medical practices would end up being invalidated if they were actually tested rigorously, instead of giving them credit for the simple passage of time. I mean it's an old joke to speak of ancient absolute monarchs who took credit for the Sun rising up in the morning but this is basically the large-scale professional version of what was simply ritualized BS. It's just as absurd.

I don't think there's ever been a greater mismatch between a problem and the skill and abilities of the people tasked with solving it. It's just so completely lacking in every regard.

 

https://twitter.com/user/status/1444908870833410051

 

I wonder what sort of views they have about any overlap with ME/CFS?

 

After many in the Long Covid community pointed out the major problems (understatement) with Dhruv Khullar's recent New Yorker article, Diana Zicklin Berrent aggressively pushed back. She now appears to have realised her error.

https://twitter.com/user/status/1445103153960165377

 

From what I could see on their website they don't mention it at all.

 

Haven't watched so not sure if the issue stands but medicine seriously needs to address their habit of taking credit for the passage of time, however I've seen many positive comments and the video at the end says that the main lesson is not to push through, so it looks like this service has actually managed to learn things.

Ironic that it's at Oxford. We've heard word that Sharpe was running that clinic but it was just a rumor, would be interesting to know.

https://twitter.com/user/status/1445329518621757442

 

https://twitter.com/user/status/1445287640153141249

 

https://twitter.com/user/status/1445181668550082563

https://twitter.com/user/status/1445289250597969920


(I would correct that to say that ME is explicitly discriminated by the medical profession, which fuels the societal stigma, but otherwise OK)

 

Blog article by Harvard Health that shows they aren't really paying much attention and aren't big on that learning from experience thing. As much as POTS has gained a lot more attention in the last 18+ months, it still hasn't displaced the very nonsense that made medicine dismiss it as a anxiety or a cycle of deconditioning. It's just so easy to brush off a problem affecting millions, most don't even think twice about it, or even once.

Not sure what Harvard Health really is as they push out a lot of pseudoscientific nonsense, but it's hard to tell whether Harvard Medical is any better.

https://www.health.harvard.edu/blog/pots-lightheadedness-and-a-racing-heart-202110012608

Research suggests about half of people diagnosed with POTS will recover or improve over a period of a few years.

However, for others, a vicious cycle can develop if POTS goes untreated. The cycle begins because people start to spend more time in bed, avoiding activities that provoke symptoms. As people become far less active, muscle mass in the legs is lost, heart capacity shrinks, and the volume of circulating blood is reduced. These changes make standing upright even more uncomfortable, leading to yet more time spent in bed.

Over time, some people stuck in this cycle can become disabled. They’re unable to perform daily household tasks without becoming dizzy and exhausted. Many take time off from school or work.​

They appear completely oblivious to the fact that this loss of function is sudden, does not take weeks or months to develop. And clearly a lot of other things.