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

Scientific American: "COVID Long Haulers Are Calling Attention to Chronic Illnesses"

"Medical science has increasingly understood that infections can trigger ongoing physical symptoms in a subset of people, yet the medical establishment has typically ignored the experiences of those people. Such conditions include myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), so-called chronic Lyme disease, and more."

"The clamor, combined with the scope of the problem, had a clear impact on medical attitudes, making long COVID visible in ways that ME/CFS had struggled for decades to become."

"Medicine has a long history of stigmatizing diseases it does not understand and cannot yet readily measure."

"The potential for transformation goes far beyond long COVID. Understanding what causes this condition might illuminate treatments for ME/CFS, tick-borne illness and other diseases that involve dysfunction of the immune system, many of which are on the rise. “I believe understanding the pathogenesis of long COVID not only will help reveal parallel mechanisms for ME/CFS but also may hold a key to understanding autoimmune diseases, as many autoimmune diseases occur postinfection,” Iwasaki says."

"It is time for medical researchers to investigate these long-contested illnesses with the full force of science’s power and for medical educators to train doctors in how to effectively care for chronically ill patients. If they do not, they will be failing not only this generation of patients but many millions more to come."

 

OICanadian: "The problems to do physical exercise that those who have long Covid are suffering"

"The research I carried out shows that the difficulty of doing physical exercise is precisely one of the most common symptoms of Covid in the long term,” says Lambert. Some just don’t have the strength, says the scientist, while others suffer relapses of debilitating symptoms such as fatigue, brain fog or muscle pain. This worsening of symptoms even after minimal physical activity—sometimes called “post-exertional malaise” (PEM)—seems very common among long-Covid patients.

"In August, other scientists published an online survey of 3,762 people with long Covid and discovered that 89% manifested post-exercise discomfort."

""However, these exercise-induced problems do not stem from simply being “out of shape.” The effects “are totally different from the common, wild lack of training,” says Dr. David Systrom, an intensive care pulmonologist at Brigham and Women’s Hospital in Boston."

"Some doctors also point out similarities between patients with long Covid and those with chronic fatigue syndrome (also known as myalgic encephalomyelitis or ME/CFS) who suffer from severe exhaustion, cognitive and memory problems, and often muscle or joint pain."

"For decades, the medical recommendation for patients with chronic fatigue syndrome was that they exercise, because it would improve their symptoms, but in many cases it ended up being counterproductive and worsened the condition of their disease, so doctors no longer advise it."

 

Uhhh, the fake BPS/psychosomatic/whatever research, duh, but there is still a lot of research that's currently being replicated and that research is definitely useful. It could have saved at least 1 year, 2 if medicine were a mature discipline. It can still be leveraged to cut time instead of waiting for it to be slowly replicated by random teams working in isolation.

But to do that it's necessary to differentiate the real research from the scam pseudoscience that's dominated, and that means calling it a scam, a sham, a failure, whatever. And since this junk research was supported 100% by all medical institutions and the real research was dismissed as a scam then it's massively embarrassing at a level that frankly medicine has never managed to admit having made mistakes. And that's the real obstacle: ego. It's not technical, not even financial. It's strictly about people with huge egos, in a profession where egos are counterproductive, having to admit having been 100% wrong for a long time.

This has to be said. The passive voice is not enough. Like that "not repeating mistakes" we hear often and is never, ever, accompanied by a clear assertion that that mistake must be fixed. No one ever suggests fixing that ongoing mistake, just not to repeat it, which is the guaranteed outcome as long as the mistake isn't fixed, because those aren't two related issues, they are the exact same issue.

 

See, again here. This admits millions were failed in the past and the present, ongoing. And it only talks about not repeating it for millions more, not even a suggestion that it must be fixed for the millions failed already. Just don't add to it, but you don't have to think about the millions of lives already destroyed.

It's like a fundamental inability to even consider that there should be responsibility for mistakes. They're all passively voiced and spoken as some distant things happening in a faraway land that was imposed onto medicine and they had no choice but to do it. How can we even have a serious plan to move forward when the plain facts can't even be discussed lest they anger people and make them even more committed to do nothing to fix this.

 

This reminded me of the recent New York Times article, and indeed it is, but this time it's not behind a pay wall

 

Ah gotcha, my fault. For some reason I thought it was a little different...I think this time they edited in ME then, because at least as of Monday the NYT article only referred to ME/CFS as CFS or chronic fatigue. So there's that.

 

It's useful to have a version that's not behind a pay wall. Thanks.

 

NorthJersey: "COVID could launch an epidemic of chronic fatigue syndrome, doctors warn"

Some quotes:
"Even as the latest COVID surge recedes, doctors and patient advocates warn that the virus could leave a new epidemic in its wake: millions more cases of the rare, mysterious condition known as chronic fatigue syndrome."

Researchers increasingly see parallels between chronic fatigue syndrome, which affects 1.5 million Americans, and long COVID, the barrage of symptoms including exhaustion, persistent pain and cognitive impairment that can linger for months in some patients.

"The connection between the two disorders is still being studied, but some research suggests the pandemic could more than triple the prevalence of chronic fatigue syndrome, also known as myalgic encephalomyelitis, or ME."

“When we saw COVID happening, people in the ME community were some of the first to raise alarm bells that this was going to be a mass disabling event,” said Robert Sklans of Metuchen, a board member with the advocacy group #MEAction Network. “We were looking at the symptoms of long COVID and saying there are going to be a boatload of people with ME/CFS."

"That horrifies those familiar with ME/CFS, a complex, often debilitating disease that leaves some sufferers permanently homebound. Yet it has also raised hopes of more awareness and research funding for a disorder that patients feel hasn't gotten enough attention.

"James Strazza, a former Morris County man who's been confined to his home for two years by the condition, said the public needs to know "how little the government and medical industry cares for people with ME and chronic illness in general."

 

Maybe there is a better thread for this but I’ve looked through the “epidemics” section a bit but didn’t see a better thread:


MON, 14 FEB, 2022 - 08:10
Cork treatment that’s a cure for Long Covid
A West Cork man talks about his ordeal with Long Covid, and how a treatment available in Bandon has turned his life around

https://www.echolive.ie/corklives/arid-40807614.html

The treatment is hyperbaric oxygen which has been around for decades and some people with ME/CFS have already tried. Don’t think I ever came across recoveries.

This person is still only working part-time so not sure “cure” is a good word for it.

 

Comments I have seen on HBOT are not encouraging. Some early claims that died out quickly. I doubt this is relevant, it wouldn't even make much sense anyway.

 

Heard it all before, don't think I remember swathes of people with ME getting better then, despite the hype.

I am coming to the conclusion I should just take a load of sedatives and not wake up for a few years and see if the same marketing as I've seen before is still ongoing, and if so take some more.

 

Good article from Scientific American
https://www.scientificamerican.com/article/covid-long-haulers-are-calling-attention-to-chronic-illnesses/ '…...

'…... I had just finished reporting and writing a book about infection-associated syndromes and contested chronic illnesses, long an underresearched and dismissed area of medicine.

Medical science has increasingly understood that infections can trigger ongoing physical symptoms in a subset of people, yet the medical establishment has typically ignored the experiences of those people.

Such conditions include myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), so-called chronic Lyme disease, and more.


…….It is time for medical researchers to investigate these long-contested illnesses with the full force of science’s power and for medical educators to train doctors in how to effectively care for chronically ill patients.

If they do not, they will be failing not only this generation of patients but many millions more to come.'

Also;
https://news.harvard.edu/gazette/story/2014/12/a-journey-into-illness/

O’Rourke, 38, was diagnosed last year with Lyme disease, a bacterial infection caused by a tick bite that can start off feeling like the flu and progress to nerve damage, arthritis, and, in severe cases, neurological problems. “I got much better,” she said. “But either the autoimmunity preceded the Lyme disease, or it helped trigger the autoimmunity.”

https://www.penguinrandomhouse.com/books/317923/the-invisible-kingdom-by-meghan-orourke/
A landmark exploration of one of the most consequential and mysterious issues of our time: the rise of chronic illness and autoimmune diseases

 

The article also has the below paragraph

Does anyone know what ‘adequate treatment and medication’ David Systrom may be referring to in the quoted paragraph above? Thanks.

 

No mention of ME, but on post infectious disease in general

Nature Pandemics disable people- the history lesson that policymakers ignore

quote:
There was a tendency among medics to play down long COVID to begin with. Now, thanks in large part to the voice that ‘long-haulers’ found as they came together in a global online community that includes health-care workers, long COVID is the subject of large grants, research projects and a few specialist clinics, including for children.

Yet it continues to be overlooked by decision makers, who still present the costs and benefits of COVID-19 containment in terms of data on cases, hospitalizations and deaths alone. This means that in many countries, a burden of future disability is being created that could have been prevented, or reduced.

 

https://www.theguardian.com/world/2...ces-chance-of-getting-long-covid-studies-find

https://ukhsa.koha-ptfs.co.uk/cgi-bin/koha/opac-retrieve-file.pl?id=fe4f10cd3cd509fe045ad4f72ae0dfff

 

I believe antihistamines were only helpful for 2 subsets of pwLC in this article;

"One of her medical providers then prescribed Vistaril (hydroxyzine pamoate), a more potent antihistamine that's also used as an anti-anxiety medication. On a daily dose of the drug, "the patient had a nearly complete resolution of exercise intolerance, chest pain, fatigue, and brain fog," and her bruises, headaches and rashes steadily improved over time, the case report notes. After nine months of treatment, she'd regained about 90% of her pre-PASC functioning, and she was able to fully return to work and regularly exercise, as she had prior to her infection".


https://www.livescience.com/antihistamines-to-treat-long-covid-pasc

 

I have being going to hyperbaric oxygen for years. It is not a cure for ME but it gives the same lift as a day at the seaside, if you know what I mean. The clearest result is that I sleep much better after a session.

However, the clearest results are from wound healing. We have people with chronic leg ulcers which clear up after a few weeks. 6 weeks after a major operation I had forgotten it had just been a few weeks.

If parts of the body have been physically damaged by covid-19 then HBOT could well help with healing. Longcovid is such a mishmash of those who have ME like disease, those with a postviral who will recover in a few months and those who have organ damage.

If it is organ damage HBOT will speed up healing but recovery could take longer. I remember Paul Cheney saying that when he got his new heart it worked perfectly right from the start but it took his body almost a year to heal so that he truly recovered. Maybe something we do not take into account enough.

 

Medical News Today: "What is 'long COVID' and how does it affect those who experience it?"

"Extreme fatigue appears to be the common denominator between long haulers, which has led some specialists to compare or link the long COVID phenomenon with post-viral syndrome. The symptoms of this condition include a sense of exhaustion in the aftermath of a viral infection."

"They also suggest that myalgic encephalomyelitis (ME), or chronic fatigue syndrome, a condition that causes muscle aches, brain fog, and a debilitating sense of fatigue, may offer some clues on the mechanisms behind long COVID."