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

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Op-Ed: How long-haul COVID-19 could offer clues for treating other puzzling chronic illnesses

https://www.latimes.com/opinion/story/2021-04-18/long-haul-covid-19-symptoms-chronic-illnesses

Today, millions of people struggle with chronic conditions that may also be triggered by immune system abnormalities, whose origins are often unknown — including rheumatoid arthritis, multiple sclerosis, lupus, Lyme disease, chronic fatigue syndrome, Guillain-Barre syndrome and inflammatory bowel disease. Comprehensive immune analyses will almost certainly provide fundamental new insights into many of these diseases.

Unfortunately, most people with long-haul symptoms share at least one prominent experience: the difficulty in getting their conditions recognized, diagnosed and effectively treated. Physicians and insurers often deny patients’ reality and experiences when they present complex and seemingly unrelated symptoms and treat their conditions as psychosomatic. Not only does this demean the patient, but it exacerbates the worry, confusion and stress of patients and families dealing with significant mental and physical health challenges. This also delays treatment, adds to overall costs and diminishes productivity and quality of life.​

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Leroy Hood, a member of the National Academies of Sciences, Engineering and Medicine, is a professor and co-founder of the Institute for Systems Biology and senior vice president and chief science officer of the Providence St. Joseph Health system.​
 
Kalliope said:
The article is paywalled, so don't know if ME is mentioned. Got a bit worried when the title mentions singing..

The Telegraph: The hunt for a long Covid cure - from vaccines to antihistamines and singing
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Not much going on, but it's a fair article. The singing is mentioned because of a respiratory unit probably ascribing natural improvement to whatever they are doing, as is tradition. It mostly lists a bunch of things to show how a lot of things are being tried but nothing effective has yet come out of it. Although those things are just throwing stuff at the wall so I'm not sure it really counts, frankly. Pragmatic rehabilitation is not a thing, medical professionals don't have magical healing hands, sorry BPS folks.

Somehow the safe and effective treatments developed by our BPS overlords are not considered safe and effective, despite their best attempts at marketing it as such. How odd and unexpected.
 
rvallee said:
Not much going on, but it's a fair article. The singing is mentioned because of a respiratory unit probably ascribing natural improvement to whatever they are doing, as is tradition. It mostly lists a bunch of things to show how a lot of things are being tried but nothing effective has yet come out of it. Although those things are just throwing stuff at the wall so I'm not sure it really counts, frankly. Pragmatic rehabilitation is not a thing, medical professionals don't have magical healing hands, sorry BPS folks.

Somehow the safe and effective treatments developed by our BPS overlords are not considered safe and effective, despite their best attempts at marketing it as such. How odd and unexpected.
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Thank you so much for a summary of the article, @rvallee !
 
Dolphin said:
Alcohol intolerance is common in ME
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Can somebody on Twitter ask on that thread about people's experience with different alcohols? Most alcoholic drinks contain a lot more components than just alcohol, and those are a confounding factor in judging the effects of alcohol itself.

I am particularly interested in their experience with med-high quality vodka, compared to other drinks.

My experience is that decent quality vodka is noticeably less of a problem than other drinks, though still a problem.

https://www.latimes.com/opinion/story/2021-04-18/long-haul-covid-19-symptoms-chronic-illnesses

Physicians and insurers often deny patients’ reality and experiences when they present complex and seemingly unrelated symptoms and treat their conditions as psychosomatic. Not only does this demean the patient, but it exacerbates the worry, confusion and stress of patients and families dealing with significant mental and physical health challenges. This also delays treatment, adds to overall costs and diminishes productivity and quality of life.
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Nice summary.
 
Long COVID Dramatically Increases Cases Of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
On 5th Annual Advocacy Week, bipartisan legislators set to make major funding announcement.

Solve press release
LOS ANGELES, April 19, 2021 /PRNewswire/ -- As Long COVID brings renewed attention to the debilitating and chronic illness known as Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), a record number of advocates are virtually gathering on Capitol Hill for Solve M.E.'s 5th Annual Advocacy Week Monday, April 19.

Organizers believe the surge in Long COVID is driving more participation. Nearly one thousand advocates signed up to attend this year's Advocacy Week – nearly tripling 2020 numbers, with registrants representing 49 states, the District of Columbia and Puerto Rico. More than 60 percent of the advocates say it's their first time ever seeking a conversation with their member of Congress.

Dr. Anthony Fauci concurs, lasting COVID-19 effects indicative of ME/CFS.

"The significant rise in participants directly corresponds with the rapidly increasing number of people suffering from the disease, including millions now dealing with Long COVID," said Oved Amitay, President and CEO at Solve ME/CFS Initiative (Solve M.E.). "There are 2.5 million Americans (and, climbing by the day) affected by ME/CFS, yet it is at the bottom 5% of National Institutes of Health funding."
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https://www.prnewswire.com/news-rel...elitischronic-fatigue-syndrome-301271828.html
 
We don't seem to have a thread for south africa so posting this here:
'Long Covid is a post-viral fatigue syndrome also seen after swine and bird flu'
Pippa chats to general practitioner Dr Jason MacArthur who is also the Medical Director of Ingress Healthcare about the condition that has become known as 'long Covid.'

It appears to fall into a category of diseases that have been known about for a long time called post-viral fatigue syndrome.

Dr Jason McArthur, Medical Director - Ingress Healthcare
He says this has been recorded previously in cases of swine flu and bird flu, where the virus itself passes, but the condition continues to affect the patient.

We have seen this with Covid, and it is when the signs and symptoms last longer than the typical recovery period, and the patient can show signs typical of covid itself..or post-viral fatigue symptoms like ME.
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https://www.capetalk.co.za/articles/411762/long-covid-is-a-post-viral-fatigue-syndrome-also-seen-after-swine-and-bird-flu

(A thread has now been created for news from South Africa: News from South Africa)
 
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Some French Long Covid patients are being sent to what seems to be intensive exercise rehabilitation programs: 30 mornings in a row. Doesn't appear to be for LC, as the cardiologist seemed to be either unaware or indifferent to it, probably just standard "you're just tired" approach. Or maybe it is the intent and they are simply lying, which at this point wouldn't surprise me, it's clearly common practice (and why it needs to be explicitly banned).

30 days in a row. Absolutely insane the harm this will do. I don't know who pays for that but it can't be cheap, especially so that it pretty much guarantees serious deterioration in many. That's like paying to lose more money, and people. Horrible.

Auto-translate said:
Help. My cardio sent me for cardiac rehabilitation in 1 specialized clinic (30 consecutive mornings) The cardio seen this morning did not know the #covidlong and I even always have chest and shoulder pains. And explain to them the #covidlong
@GillesThoni
? Advices? thank you
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Andy said:
Long COVID’s long R&D agenda

"As researchers work to understand the biology and epidemiology of post-acute COVID-19, a pioneering platform trial is now testing treatments to try to address the long-term complications of infection in previously hospitalized individuals."

https://www.nature.com/articles/d41573-021-00069-9
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It mentions ME towards the end:

With a research agenda in place, moreover, patients infected with other viruses may stand to benefit. The coronaviruses that caused MERS and SARS, as well as the influenza virus and other viral pathogens, have all been implicated with longer-term sequelae. “A post-viral syndrome phenomenon, anecdotally, is well recognized. There just hasn’t been much of a spotlight on it,” says Haroon. The CDC lists viral infections as a hypothesized cause of myalgic encephalomyelitis/chronic fatigue syndrome, which shares some characteristics with long COVID.

As investigators gain insight into appropriate control groups, background symptom rates, clinical trial designs and the biology of long COVID, they may be able to make inroads against other post-viral syndromes.

Progress with long COVID will also leave the community better positioned to act the next time a pandemic strikes.

“We need to be ready so that the very moment people hit the front doors of hospitals or health-care settings, everything's ready to go,” says Summers.
 
Why impact of ‘long Covid’ could outlast the pandemic
Millions of people who have gotten Covid-19 and survived are finding that a full recovery can be frustratingly elusive. Weeks and months after seemingly recovering from even a mild case, many patients confront a wide range of health problems. As researchers try to measure the durability and depth of what's being called "long Covid," a burgeoning number of specialized post–Covid clinics are opening to handle the patients. The scale of the pandemic means that Covid's disabling effects -- as well as economic pain and drain on health resources -- could persist well after the contagion ends.
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Some researchers say the pandemic may spur a raft of long-term problems, such chronic fatigue syndrome, also called myalgic encephalomyelitis or ME, dementia, Parkinson's disease, diabetes and kidney impairment. The reduced work hours reported in 68.9% of long-Covid patients indicate the pandemic is crimping labor productivity. With 136 million Covid cases worldwide, even a small share with long-term debility could have enormous social and economic consequences. And these will be be magnified if people end up enduring years or decades of coronavirus-related disability.
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https://www.tbsnews.net/analysis/why-impact-long-covid-could-outlast-pandemic-234982
 
Long COVID’s long R&D agenda
In late April, the HEAL-COVID trial will start recruiting COVID-19 survivors from hospitals in the UK to study treatments that could reduce the long-term effects of SARS-CoV-2 infection. For Charlotte Summers, lead investigator of the trial and an intensive care specialist at the University of Cambridge, the trial couldn’t come soon enough. “Hospitalized patients who have survived hospital discharge think ‘woohoo, I'm through the worst of it’. But actually, that's not the end of the story by a long shot,” she says.

Certainly, hospitalized COVID-19 patients have been particularly hard hit by the long-term effects of infection. Roughly 12% of these patients die within months of being discharged from the hospital, found a recent analysis of nearly 48,000 patients in the UK. Nearly 30% are re-admitted to hospital. Respiratory disease, cardiovascular disease and diabetes diagnoses are also raised in these individuals compared with matched controls.

The long-term impacts of infection on non-hospitalized COVID-19 patients are more difficult to assess, but a concerning picture has emerged there as well. The World Health Organization (WHO) estimates that 10% of COVID-19 survivors — including both hospitalized and non-hospitalized individuals — have persistent problems 12 weeks after infection.
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Researchers are also gearing up to tackle long COVID in patients who overcame their SARS-CoV-2 infections in the community, rather than in hospitals.

The NIH’s soon-to-start ACTIV-6 trial, for example, will test up to 7 repurposed drugs in 13,500 non-hospitalized patients with mild-to-moderate COVID-19. Although the trial is primarily aimed at reducing the duration and severity of the acute infection, it will also assess impacts on long-COVID symptoms at 90 days.

ACTIV-6 investigators have not yet disclosed what drugs they will test.
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“A post-viral syndrome phenomenon, anecdotally, is well recognized. There just hasn’t been much of a spotlight on it,” says Haroon. The CDC lists viral infections as a hypothesized cause of myalgic encephalomyelitis/chronic fatigue syndrome, which shares some characteristics with long COVID.
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https://www.nature.com/articles/d41573-021-00069-9
 
If they are going to test drugs, it will have to be for at least 2 years to ensure that long-term effects are noted. I think that a number of us with ME, myself included, have found that, for example, some supplements have helped a great deal for a couple of years, and then stopped.
 
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