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

rvallee · Aug 23, 2020

After Recovering From COVID-19, Many Still Have Painful Symptoms

https://www.npr.org/transcripts/905015250

Dr. Margot Gage is among the roughly 2 million Americans who have recovered from a coronavirus infection. But Dr. Gage, like tens of thousands of others, still continues to suffer from confounding and at times painful symptoms. She's also a social epidemiologist and a professor at Lamar University and joins us now from Beaumont, Texas. Dr. Gage, thanks so much for being with us.
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GAGE: I'm not able to work in the same capacity as what I used to. I'm having memory problems, brain fog. And too much energy can leave me on bed rest.

SIMON: I gather your work includes the study of viruses. What should we learn from people like you at the moment and cases like yours?

GAGE: Well, what we can look at is past history. And we know that with MERS and with SARS and with viruses in general, people experience - can experience post-viral syndrome with symptoms that manifest as chronic fatigue syndrome. So it's kind of to be expected that some people would've contacted what I'm contacting with having - you know, with COVID complications.
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"Too much energy" probably meant too much exertion. Yay, brain fog.

It's incredible that the complete disconnect between "we've known about this for a long time" and "nobody knows anything about it" while presenting with this problem at a clinic means you will likely get dismissed with prejudice about your not-medically-relevant "psychological issues" is not yet seen as an issue. Right up there with "climate change may be real but it's not related to human activity" in the moving-the-goalposts.

Hello? Consistency would be nice. It's literally expected and required but I guess we'll settle for it would be nice. Is it something we've known about for a long time or something that does not exist and deserving of the mockery we are systematically subjected to? Can you possibly make up your mind and stop believing too mutually exclusive things? That would be great, thanks.

I get that it's hard after decades of denial but ignoring this blatant cognitive dissonance only means you are OK with continuing to harm people out of failure.

Kalliope · Aug 23, 2020

rvallee said: ↑

After Recovering From COVID-19, Many Still Have Painful Symptoms

https://www.npr.org/transcripts/905015250

"Too much energy" probably meant too much exertion. Yay, brain fog.

It's incredible that the complete disconnect between "we've known about this for a long time" and "nobody knows anything about it" while presenting with this problem at a clinic means you will likely get dismissed with prejudice about your not-medically-relevant "psychological issues" is not yet seen as an issue. Right up there with "climate change may be real but it's not related to human activity" in the moving-the-goalposts.

Hello? Consistency would be nice. It's literally expected and required but I guess we'll settle for it would be nice. Is it something we've known about for a long time or something that does not exist and deserving of the mockery we are systematically subjected to? Can you possibly make up your mind and stop believing too mutually exclusive things? That would be great, thanks.

I get that it's hard after decades of denial but ignoring this blatant cognitive dissonance only means you are OK with continuing to harm people out of failure.
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They talk among other about symptoms that are not on the CDC list, as hair falling out, which has been reported many places. But she also mentions that the nails are growing really long. How weird..

Sly Saint · Aug 24, 2020

Kalliope said: ↑

But she also mentions that the nails are growing really long.
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ah, demons.
(sorry I've been watching a lot of Buffy recently)

Dx Revision Watch · Aug 24, 2020

8 hours ago.

I was wondering when the post Covid-19 > CCI thing would surface:

As someone said to me this morning, is she going to start uploading scans of her empty sella for Dr Tedros G and then the #MEspine, #nightingales, #zebras and #giraffe folk will start piling in on Dr G?

Dx Revision Watch · Aug 24, 2020

#MEspine always makes me think of "railway spine".

There's a nice facsimile edition PDF downloadable [8MB] from this site:

https://openlibrary.org/books/OL25128141M/The_influence_of_railway_travelling_on_public_health

An edition of
The influence of railway travelling on public health (1862)

From the Lancet

JemPD · Aug 24, 2020

Dx Revision Watch said: ↑

8 hours ago.

I was wondering when the post Covid-19 > CCI thing would surface:

As someone said to me this morning, is she going to start uploading scans of her empty sella for Dr Tedros G and then the #MEspine, #nightingales, #zebras and #giraffe folk will start piling in on Dr G?
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Trish · Aug 24, 2020

Moderator note:
A large number of posts have been moved to a new thread. If you think your post has landed in the wrong place, please use the 'contact moderators' button to ask for it to be moved.
The World Health Organisation and ME - social media interaction, August 2020.

rvallee · Aug 24, 2020

Can't remember seeing this yet.

Long-term immunological health consequences of COVID-19

British Society for Immunology

https://www.immunology.org/sites/default/files/BSI_Briefing_Note_August_2020_FINAL.pdf

Some patients are now reporting diverse, chronic, ongoing symptoms for three months plus after initial infection. One of the first published datasets indicates about 50% of hospitalised patients are suffering symptoms such as fatigue, shortness of breath and joint pains, two months after hospital discharge.
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Diverse, instead of the usual, clearly pejorative, "complex".

Under the heading "fatigue":

Many patients who recover from severe infection can exhibit a variety of symptoms for weeks after the virus has been cleared such as fatigue, pain, sleep disruption and neurological symptoms including memory loss, delirium and hallucinations. This bears some outward similarities to chronic fatigue syndrome although we do not yet understand the underlying pathology. Three possibilities have been suggested for long-term effects after infection by scientists at Yale. Patients with long-term symptoms might still harbour infectious virus in some reservoir organ, not identified by nasal swabs. Also, persistent fragments of viral genes, though not infectious, may still be triggering a violent immune overreaction. Alternatively, although the virus is cleared, the immune system continues in an overactive or perturbed state, analogous to the long-term debilitation after glandular fever. It is not yet known how the immune system is altered in patients who have chronic symptoms after infection and those that have none. However, if the immune system is involved in the neurological symptoms then there must be an interaction between the immune and neuroendocrine systems.
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A scientific concept cannot include itself, folks. Good grief mature up over this, it's completely silly. "Fatigue" cannot itself contain "fatigue", classification and categorization form the basis of science, being able to tell things apart from other things. Clean up your damn vocabulary.

Recommendations:

Research into COVID-19 has in some respects been impeded by the lack of adequately funded long-term follow-up studies during SARS and MERS outbreaks. To properly understand the long-term immunological health consequences of COVID-19, learn from the current situation and be better prepared for any future pandemics, we need to urgently establish long-term (5–10 years) cohort studies and research programmes to track durability of the immune response (both antibody and T cells) and longterm disease consequences in COVID-19 patients. These cohorts should include representation from groups whose immune response may vary (e.g. older individuals).
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Datasets are still emerging, but there appears to be a sizeable subset of people recovered from the acute infection, who continue to suffer chronic symptoms. These people range from asymptomatic to severe infections – as such, many may not even have had a PCR test and may not be known to the NHS as positive cases. Their COVID-19 status may in some cases only be established by screening for B or T cell memory to the virus. The chronic symptoms are diverse, affecting different parts of the body and may have different underlying causes. At a clinical and at a research level, understanding these pathologies will require a multidisciplinary approach with input from immunology, respiratory medicine, cardiology, vascular biology, renal medicine, liver medicine, neurology, endocrinology and rheumatology.
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Research to better understand the underlying biological mechanisms that drive the longer-term immunological health consequences of COVID-19 should be a high priority in order to establish new therapeutic options that may alleviate or cure the diverse chronic symptoms. Failure to do so would not only perpetuate the burden of chronic disease in this large group, it would also perpetuate a substantial, new, longterm care-burden on the NHS, requiring extensive COVID-follow-up clinics stretching forward for years to come.
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rvallee · Aug 24, 2020

Published on the French government's official twitter account:

https://twitter.com/user/status/1297882526065844225

Not really worth doing a transcript, just describing the experience of long Covid, but the source is significant.

Andy · Aug 25, 2020

Research Examines Links Between 'Long COVID' and ME/CFS

The persistence of long-term symptoms in some individuals with COVID-19 illness has opened up a new line of research into the mechanisms underlying myalgic encephalomyelitis / chronic fatigue syndrome and other chronic post-viral illnesses.
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Requires log-in to read
https://www.medscape.com/viewarticle/936252

Ravn · Aug 25, 2020

Andy said: ↑

Research Examines Links Between 'Long COVID' and ME/CFS

Requires log-in to read
https://www.medscape.com/viewarticle/936252
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If a patient appears to be exhibiting signs of ME/CFS, "don't wait until they hit the 6-month mark to start helping them manage their symptoms," she said. "Teaching pacing to COVID-19 patients who have a lot of fatigue isn't going to harm them. As they get better they're going to just naturally do more. But if they do have ME/CFS, [pacing] stresses their system less"
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Lily Chu making sense, as usual.

Kalliope · Aug 25, 2020

Bloomberg: They Beat Covid, But Debilitating Effects and Economic Costs May Linger for Years

Article doesn't mention ME specifically, but post-viral fatigue as one of several consequences of the virus.

Kalliope · Aug 25, 2020

Herald.ie After-effects of even mild Covid 'like ME or chronic fatigue'

Irish cardiologists have seen a number of people infected with Covid-19 go on to suffer myocarditis which can affect the heart muscle, reducing its ability to pump and causing rapid or abnormal rhythms.

Some people have described having a kind of 'brain fog' and experiencing problems trying to think clearly.

They can have a normal brain scan but still not feel right. It's unclear what is happening but it has been suggested it is similar to a post-viral fatigue related to inflammation in the body.

Because Covid-19 has been around for such as short time there is still a lot to learn by medics about the lasting effects.

It will only become clear over time and when the findings of more studies emerge and are confirmed.

Article also quotes dr. Fauci saying it's extraordinary many who have a post-viral syndrome strikingly similar to ME or CFS.

John Mac · Aug 25, 2020

The Emerging Links Between Covid-19 and Chronic Fatigue Syndrome
Chronic fatigue syndrome may hold keys to understanding post-Covid syndrome

Almost everyone is familiar with the short-term symptoms of an acute SARS-CoV-2 infection. These include a fever, cough, breathing problems, fatigue, diarrhea, and other flu-like symptoms. While some doctors have raised alarms about the infection’s potential to inflict lasting organ damage, the popular perception of Covid-19 is that a small percentage of patients die and the rest recover.

But as the pandemic has stretched on, experts have begun to recognize that many Covid-19 patients — maybe even a majority — continue to grapple with a range of "post-viral" symptoms.

“Prolonged fatigue as well as brain fog and other persistent symptoms have been reported in a lot of Covid-19 patients.”

Some of these patients eventually get all the way back to normal, even if it takes a few weeks or months for that to happen. But some don’t. And for those who have yet to fully recover, there’s a growing suspicion that the virus may act as a catalyst for a condition that is commonly, if a bit misleadingly, known as chronic fatigue syndrome.

“Prolonged fatigue as well as brain fog and other persistent symptoms have been reported in a lot of Covid-19 patients,” says John Swartzberg, MD, an infectious disease expert and emeritus professor at the University of California, Berkeley. He says that these post-viral symptoms are typical of chronic fatigue syndrome, an illness that also goes by the name myalgic encephalomyelitis and is often abbreviated ME/CFS.

“We know that in patients who develop [ME/CFS], it’s often triggered by a bad viral infection,” he says. “And so there’s the thought that SARS-CoV-2 could be a cause.”
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My bolding

https://elemental.medium.com/the-em...-19-and-chronic-fatigue-syndrome-1db21fe9d61e

Andy · Aug 25, 2020

MPs urge Boris Johnson to meet 'forgotten victims' of coronavirus

Boris Johnson must meet families whose relatives have been killed by coronavirus and fund research into the longer-term effects, known as “long Covid”, to help the pandemic’s forgotten victims, MPs have said.

Their recommendations form part of a fresh set of demands made on the prime minister intended to shape how he prepares for a potential second wave of the illness this autumn.

MPs on the all-party parliamentary group (APPG) on coronavirus inquiry, which releases recommendations every two weeks, have heard from more than 1,100 people who have either lost loved ones to the illness, or who continue to suffer its long-term effects.
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https://www.theguardian.com/world/2...is-johnson-meet-forgotten-victims-coronavirus

https://twitter.com/user/status/1298228651553624064

chrisb · Aug 25, 2020

He may only need to look in the mirror. Where has he been, and who is he anyway?

Dolphin · Aug 25, 2020

People will recall a meeting of the all-party parliamentary group on coronavirus led to at least 2 headlines which said the symptoms were being "dismissed" as ME.

A transcript of this meeting is now available.
Here are a few extracts

https://appgcoronavirus.marchforchange.uk/publications_appg

https://d3n8a8pro7vhmx.cloudfront.n...Group_on_Coronavirus_Session_2.pdf?1597225304

Philippa Whitford MP

Thank you Layla, I mean obviously there are people trying to pigeon hole this as if it’s like post-viral syndrome, like ME, other things, but it’s clear that Covid is a disease unlike anything we’ve had and that long-Covid is a sequela of that unlike anything we’ve had. So, we now hear about research being set up and I wanted to know whether either you as individuals or the Facebook group are aware of the UK wide research that’s been set up from the National Institute of Health Research into long-Covid because obviously both treatment and management, we’re gonna have to understand it more. If I could start with Claire and then Jake and Robin.
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Claire Hastie
Just to amplify what you already said Caroline about the importance of GPs having guidelines and I think this goes back to what I said before about some people still being told it’s anxiety or being given existing labels, oh it’s ME, oh it’s pericarditis, that might just be a fraction of the symptoms that the person has on that day and they may develop more down the line, so both from the point of view of GPs, at least showing understanding even if they say we can’t treat you, at least being acknowledged and recognised. But then what you said Caroline about getting GPs based on symptoms rather than test results to be able to sign people off work, that would be a big help as well, but as I say there’s only so much you can do that before you run out of road presumably.
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Robin Gorna

Having been involved in treatment activism around AIDS in the 80s and 90s one of the things that I know is that describing the natural history is so important and can take … I think it took us nearly 15 years in HIV to describe the natural history in women for example, so I think what you’ve just been saying about multi-organ disease is so important and it’s part of why we get quite frustrated when we’re told we have post-viral fatigue because it is clearly affecting my brain, I clearly have issues that concern me on many, many different organs.
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Baroness Finlay
Yes, I am. Thank you very much indeed. And thank you for your sharing openly your experiences. I’ve been concerned that the NHS app makes it sound as if a little bit of exercise and you’ll get going again and you’ve already alluded to that, I just wondered how many of you are actually involved in on-going longitudinal research studies because, that involve not only scanning but also metabolic studies because there are great similarities with true ME and I’m not talking about post-viral chronic fatigue but this brain fog, this being completely laid out after undertaking any activity mirrors really severe ME where there are definite metabolic disturbances but they’re terribly under-recognised and I worry that all those areas of research are just not being undertaken in a long-term epidemiological way. Thank you.

Jake Suett
I would agree with you, I think ME sounds to me as though it needs to be researched more as well, but I think you know the findings that we’re finding on cardiac MRI for example don’t fit in with that, but I think that all of this post-viral phenomena need to be studied because we’re gonna learn from each other anyway, so completely agree with you, I think any research would be welcome.
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Arnie Pye · Aug 25, 2020

Jake Suett
I would agree with you, I think ME sounds to me as though it needs to be researched more as well, but I think you know the findings that we’re finding on cardiac MRI for example don’t fit in with that, but I think that all of this post-viral phenomena need to be studied because we’re gonna learn from each other anyway, so completely agree with you, I think any research would be welcome.

I bet a large proportion of people diagnosed with ME have never had a cardiac MRI, so how can anyone say it doesn't fit in with ME? There is simply no data to support this, as far as I know. Could anyone point me in the direction of such data if it does exist?

chrisb · Aug 25, 2020

...and in what percentage of cases they are finding unusual results on cardiac MRI.

EDIT perhaps a word of appreciation for Baroness Finlay would be in order.

JemPD · Aug 25, 2020

Arnie Pye said: ↑

Jake Suett
I would agree with you, I think ME sounds to me as though it needs to be researched more as well, but I think you know the findings that we’re finding on cardiac MRI for example don’t fit in with that, but I think that all of this post-viral phenomena need to be studied because we’re gonna learn from each other anyway, so completely agree with you, I think any research would be welcome.

I bet a large proportion of people diagnosed with ME have never had a cardiac MRI, so how can anyone say it doesn't fit in with ME? There is simply no data to support this, as far as I know. Could anyone point me in the direction of such data if it does exist?
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Good grief dont refer the patients to a cardiologist - they will think they are actually ill! And certainly no cardiac MRIs.... the mere ordering of the test will indulge & reinforce the 'aberrant illness beliefs' in PwME

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