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

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The Scientist - Could COVID-19 Trigger Chronic Disease in Some People?

The disease—formerly known simply as chronic fatigue syndrome, or CFS—has long been stigmatized to the point of being ignored by many physicians and researchers, in large part due to its mysterious etiology. Doctors would rule out a number of diagnoses, such as viral infections or neurological diseases, and conclude that there was nothing wrong with such patients, sometimes advising them to simply get more exercise, which would make their condition worse, notes Frances Williams, a genomic epidemiologist at King’s College London. An incident in which a high-profile study purported to identify definitive causes, which later turned out to be false, may also have discouraged scientists from studying ME/CFS, Nath adds. And while some drugs have been trialed in ME/CFS patients over the years, the results so far have been inconclusive, Moreau says, leaving few treatment options for the disease.

ETA: Article includes statements about ME research from Avindra Nath, Alain Moreau and Mady Hornig. Ends with Nath saying:

“I think people—agencies, Congress, everybody—should be really focused” on the possibility that some COVID-19 patients will develop ME/CFS, Nath says. “They really need to appropriate resources to quickly get into this field, get lots of people interested in studying these patients, and try to get the bottom of it. . . . If you don’t do it, it’ll be a missed opportunity.”
 
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‘It’s soul-destroying’ — Dublin GP says requests for COVID tests have
returned to March levels

<https://extra.ie/2020/07/17/news/irish-news/covid-test-requests-rise>
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"‘It’s my generation, people who are in their 20s and 30s, who are not
really adhering to the rules as best as they should be.

‘There’s this belief that COVID won’t affect them but that’s not true,
we’re seeing an increasing number of people in their 20s and 30s who
had coronavirus several weeks or months ago who are presenting to us
symptoms like chronic fatigue."
Click to expand...
---
 
Fauci: You're absolutely right. You don't want to be scaring people and alarming them, but they really should know that we don't know what the long-term consequences are, even when it looks like a routine infection. We better be careful. Even after you clear the virus, there are postviral symptoms. I know, because I follow on the phone a lot of people who call me up and talk about their course. And it's extraordinary how many people have a postviral syndrome that's very strikingly similar to myalgic encephalomyelitis/chronic fatigue syndrome. They just don't get back to normal energy or normal feeling of good health.
Click to expand...

https://www.medscape.com/viewarticle/933619#vp_2
https://www.medscape.com/viewarticle/933619#vp_3
 
Kalliope said:
The Scientist - Could COVID-19 Trigger Chronic Disease in Some People?

An incident in which a high-profile study purported to identify definitive causes, which later turned out to be false, may also have discouraged scientists from studying ME/CFS, Nath adds.
Click to expand...

I hope this doesn't become an oft-repeated excuse. It's not like there was a throng of scientists out there just champing at the bit to conduct meaningful biological research into ME/CSF who suddenly became disconsolate as a result of the XMRV debacle of a decade ago. US government health agencies had been sitting on their hands, implicitly discouraging researcher interest, since at least the Lake Tahoe outbreak of 1984. That's a quarter century of institutional disinterest prior to the XMRV paper. If anything, the amount of ME/CFS research has increased in the years following the retraction of the XMRV paper - a phenomena which probably has a good deal to do with patients, patient organizations and researchers becoming more visible to one another due to the internet.

This notion that we'd be so much further along were it not for XMRV is ill-informed and suspiciously convenient.
 
Forbin said:
I hope this doesn't become an oft-repeated excuse. It's not like there was a throng of scientists out there just champing at the bit to conduct meaningful biological research into ME/CSF who suddenly became disconsolate as a result of the XMRV debacle of a decade ago. US government health agencies had been sitting on their hands, implicitly discouraging researcher interest, since at least the Lake Tahoe outbreak of 1984. That's a quarter century of institutional disinterest prior to the XMRV paper. If anything, the amount of ME/CFS research has increased in the years following the retraction of the XMRV paper - a phenomena which probably has a good deal to do with patients, patient organizations and researchers becoming more visible to one another due to the internet.

This notion that we'd be so much further along were it not for XMRV is ill-informed and suspiciously convenient.
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I thought at first it was the PACE trial they meant :laugh:

You make a good point and perhaps it's even the opposite that's true? Wasn't it the XMRV saga that got Ian Lipkin into ME research, for instance?
 
The XMRV episode was the first time that many mainstream scientists and doctors realised that ME was a serious disabling disease. Before that it was the older polio experts and a few interested researchers alongside those who either had the disease themselves or someone close to them.

A spotlight was shone on ME which has never gone out. To borrow a cliche the genie came out of the bottle and has not gone back.

It may be that the most important outcome was the way the patient community began to unite through social media which has given a voice to the sickest among us. There have always been expert patients, but the patient scientist getting peer reviewed and published is a wonderful outcome.

(I thought they were talking about the PACE trial too!)
 
Kalliope said:
The Scientist - Could COVID-19 Trigger Chronic Disease in Some People?

The disease—formerly known simply as chronic fatigue syndrome, or CFS—has long been stigmatized to the point of being ignored by many physicians and researchers, in large part due to its mysterious etiology. Doctors would rule out a number of diagnoses, such as viral infections or neurological diseases, and conclude that there was nothing wrong with such patients, sometimes advising them to simply get more exercise, which would make their condition worse, notes Frances Williams, a genomic epidemiologist at King’s College London. An incident in which a high-profile study purported to identify definitive causes, which later turned out to be false, may also have discouraged scientists from studying ME/CFS, Nath adds. And while some drugs have been trialed in ME/CFS patients over the years, the results so far have been inconclusive, Moreau says, leaving few treatment options for the disease.

ETA: Article includes statements about ME research from Avindra Nath, Alain Moreau and Mady Hornig. Ends with Nath saying:

“I think people—agencies, Congress, everybody—should be really focused” on the possibility that some COVID-19 patients will develop ME/CFS, Nath says. “They really need to appropriate resources to quickly get into this field, get lots of people interested in studying these patients, and try to get the bottom of it. . . . If you don’t do it, it’ll be a missed opportunity.”
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Now shared on Facebook. The Scientist has over 2 million followers there.

 
I think this also refers to frances Williams:

"Williams and Hornig are both making use of apps they and others have developed to identify and track the progression of long-haulers. Williams’s app, which encourages people to log SARS-CoV-2 infections and submit regular reports on their symptoms, was released just before the March peak of infections in the UK and has been downloaded by 3 million people so far. Of them, around 3,000 are twins who are part of a long-term study of how genetic factors influence health, and have already provided blood as well as genetic samples before the pandemic. Williams and her colleagues will use the data to try to tease out genetic and immunological factors that help determine who suffers from long-term disease. “That’s going to be essential, I think, for working out what’s going on. Because once you find genetic abnormalities, then [skeptics who still dismiss ME/CFS as a psychiatric disease] will have to accept it,” she says."

Above quote is from
https://www.the-scientist.com/news-...-trigger-chronic-disease-in-some-people-67749
 
Kalliope said:
Wasn't it the XMRV saga that got Ian Lipkin into ME research, for instance?
Click to expand...

I think Dr. Lipkin's interest in ME/CFS actually goes back to the 1984 Lake Tahoe outbreak. I believe he was in San Francisco at the time and Dr. Dan Peterson got in touch with him to discuss the outbreak (unless I'm misremembering).

Also, Dr. Lipkin was the principal investigator on a 1999 paper that found no connection between CFS and the virus that causes Borna disease, an infectious neurological syndrome of warm-blooded animals, possibly including humans.
 
Brain fog, fatigue, breathlessness.
Rehab centers set up across Europe to treat long-term effects of coronavirus
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https://edition.cnn.com/2020/07/19/health/long-covid-italy-uk-gbr-intl/index.html
Italy:
"The positive thing is that, after a period of exercise in our gym, most of them can recover efficiently."
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UK
His team now also includes specialists in chronic fatigue, a dietician and a psychologist, Whitaker said. Patients who come to the clinic are assessed for physical and cognitive problems and physiotherapists help with rehab programs.
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The leader of the PHOSP-COVID study, Professor Chris Brightling, Professor of Respiratory Medicine at the University of Leicester, told CNN the study was the biggest of its kind that he was aware of globally.

"What we really want to understand is after they've been discharged from hospital with Covid-19, what's the consequences," he said. The great thing would be that there have been none, but it's highly likely that there would be a number of problems, which could range from chronic fatigue, muscle and headache, poor exercise tolerance, breathlessness, amongst many others.
"It's trying to understand the scale of that burden, what's the severity of it and what can we do about it."

The 10,000 individuals invited to take part in the trial will be asked to fill out detailed questionnaires, undergo blood and other tests, be monitored doing exercise and have imaging done on their lungs and other organs, he said.

"Obviously we would be looking over time as well, so it would be far more comprehensive than studies that have been done thus far."
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Forbin said:
Also, Dr. Lipkin was the principal investigator on a 1999 paper that found no connection between CFS and the virus that causes Borna disease, an infectious neurological syndrome of warm-blooded animals, possibly including humans.
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All these studies which have ruled out viruses suffer from the mixed bag that is CFS, especially in 1999 US where exercise problems were not considered at all.

It is unlikely that all ME is from Borna disease but any positive cases would be swamped by the others.

I haven't read this paper, just that a lot of the historical work had these problems. A positive result means something but a negative result could have many causes. Just an aside.
 


https://theconversation.com/coronav...source=twitter&utm_medium=bylinetwitterbutton

Interesting how this piece by Frances Williams seems to differ from the one by Katarina Zimmer in The Scientist that quotes Williams.

In 'The Conversation', William Speaks only about "chronic fatigue", circumnavigates ME and even CFS in the text, but links to Pariante's study study allegedly on a proxy model for CFS and also to education material for doctors which actually is:

https://www.studyprn.com/p/chronic-fatigue-syndrome

Edit: Oh, that's Nina Murihead's course which I didn't expect when I skimmed the article -- good!

Also linked, as a 'guidance for patients in managing chronic fatigue and how to conserve energy' is the RCOT guidance on 'rehabilitation': https://www.rcot.co.uk/node/3474

Tweet retweeted by SW by the way.
 
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