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

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COVID-19 and Post Viral Fatigue: Growing Recognition


I haven't watched this video myself so far, but saw a few people praising it. I recall watching another of his videos a few weeks ago and for some reason thought he was a medical doctor, but that's not the case:
Gez Medinger I just thought I’d comment here as it was brought to my attention that my film had been shared on this page.

Firstly, thank you very much for the positive comments, the support and for putting it out there.

To answer some of the questions about my background, I’m a drama and documentary filmmaker (with an original degree in Engineering). I experienced PVFS for the first time after glandular fever 20 years ago. It took 9 months and 4 different doctors before I finally got the diagnosis. It lasted a year in total.

After catching covid in early March this year (fairly textbook symptoms after exposure to confirmed positive test) I have suffered with severe fatigue, headaches, dizziness and muscle aches, well in excess of what I experienced after glandular fever.

After seeing very little exposure for the condition, I made a film in April about it - subsequently the media has started to write about it. I think we’ll be hearing much more about it in the coming months.

If you’ve got any questions let me know, but I kind of feel like those of you who have real experience of ME are the experts!

To echo the other thoughts here - if greater attention is brought to the condition as a result of covid 19 then hopefully that would be a positive that could lead to further research and understanding of this particularly debilitating condition.

Particular thanks to Charles Shepherd for the article quoted in the film, and the ME Association for the excellent resources put together so quickly regarding covid.
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Tom Kindlon said:
COVID-19 and Post Viral Fatigue: Growing Recognition
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Have watched it.
Good in parts but I wish he would make it clearer when he keeps talking about post viral fatigue, and then mixes with PVFS.

Best bit is around from 5 minutes in where he asks the question could post covid that goes on to pvf lead to chronic ME, and whether exercise could make that a possibility.

Around 8 mins talks about PEM.
9.34 he is looking at the evidence and says he can't find a BMJ article quoted by Joan McParland ( couldn't read which one he is referring to), then goes on to talk about the PACE trial.
Around 11.oo talks about activity management and having to budget energy, sleeping when you can.
Concludes the best info is provided by the MEA and that people should REST themselves better, not try to exercise themselves to recovery.
 
I am curious about the reports of T cell reduction in severe COVID-19 cases and the research into T cells in ME and how they might relate to each other.
https://www.medrxiv.org/content/10.1101/2020.02.18.20024364v1
Diao et al : CONCLUSIONS T cell counts are reduced significantly in COVID-19 patients, and the surviving T cells appear functionally exhausted.
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I dont really believe in functional exhaustion and consider it is probably due to down- or dys- regulation of some kind, but something which sounds similar has cropped up in relation to ME.
https://www.nih.gov/news-events/nih-research-matters/immune-cell-metabolism-altered-me-cfs

We have also discussed a theoretical paper on ME and T cells by Sepúlveda et al.
https://www.s4me.info/threads/me-cf...erpesvirus-infections-2019-nacul-et-al.12025/

This paper draws on two cytokine papers which conclude that raised transforming growth factor-beta (TGF-β) is associated with ME/CFS.
e.g. Montoya et al.
https://www.pnas.org/content/114/34/E7150

I dont claim to be an expert or understand this properly and would welcome others input if they know more about this but going by the wiki, what little we know about T cells suggests TGF-β is involved in regulating T cells.

https://en.wikipedia.org/wiki/Transforming_growth_factor_beta#T_lymphocytes
TGF-β1 plays a role in the induction from CD4+ T cells of both induced Tregs (iTregs), which have a regulatory function, and Th17 cells, which secrete pro-inflammatory cytokines.
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https://en.wikipedia.org/wiki/T_helper_17_cell
signals that cause Th17s to differentiate actually inhibit Treg differentiation
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So it would appear that understanding T cell activity is important for both COVID-19 and ME research and this suggests that the two conditions could interact significantly but quite how remains unclear. My own experience of suspected COVID-19 was not life threatening so I am hopeful that PWME are not more at risk but I am not sure how COVID-19 might predispose people to getting an ME like condition.

My hope is T cells will be researched better because of their involvement in COVID-19 and that this will help with understanding ME as well and vice versa, that ME research into T cells can help with understanding COVID-19.
 
Tom Kindlon said:
COVID-19 and Post Viral Fatigue: Growing Recognition


I haven't watched this video myself so far, but saw a few people praising it. I recall watching another of his videos a few weeks ago and for some reason thought he was a medical doctor, but that's not the case:
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Just watched it. Much better than the first video, where he had confused some of the BPS research as being significant, rather than, you know, what killed the field for the last several decades. Frankly pretty good overall, though still clearly unaware of the decades of history and, especially, the current state of sabotage. The confusion is definitely normal given disinformation comes straight from trusted authorities. At one point I had no idea what role Sharpe had played and tweeted him that he could be a hero to us if he debunked this weird silliness, not knowing he was in on it. Oh, the naive first forays into this dystopian nightmare.

It really highlights the silliness of it all by referring to it as fatigue and listing a baker's dozen list of symptoms. What a mess this sabotage has made.

LOL at debunked PACE trial, but not clear he found out that it is both debunked while still the "proof" that ME is psychological and very much as influential as ever.

I noticed the MEAssociation has reached out to him and he gave them their email.

Really telling that he speaks of being at best at 20% of what he was, yet clearly has more energy and cognitive focus than I have had in years. I would nearly kill for this level of functioning. A mosquito or something. Maybe hundreds.
 
I watched it. Pretty good overall, and allowance does need to made for this issue being very much a work in progress.

He is somebody to keep onside and even reach out to.

COVID19 might be an opening for the BPS school, but it is also an opening for their critics.
 
Tom Kindlon said:
COVID-19 and Post Viral Fatigue: Growing Recognition
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This is actually quite good, especially for something produced by somebody who, presumably, has only been digging into the whole PVFS/ME/CFS murky mess for a few weeks. His previous video did have a few typical "beginner's mistakes", but this second one is much better, showing somebody who's a quick learner and also somebody who's prepared to listen and revise/refine his ideas.:thumbsup:

He hones into some key questions (see screenshot) and soon finds out that the answer to #1 is "stuff all", which necessarily means the answer to #2-3 is "we haven't got a clue". Maybe the planned OMF post-covid studies will finally shed a little overdue light on the relationship between virus, PVFS and ME.
pvfs-me youtube screenshot.JPG

He also understands the delay factor in PEM and the importance of rest and staying within your individual activity limits, putting to shame the far too many people who purportedly have been working in the field for decades and who still don't get this. (Though it is good to see that there are still a number of doctors who advise their post-covid patients to rest lots, according to some of the reports in the video.)

I hope he recovers soon but doesn't forget his experience too quickly. It would be great if he would then use some of his newly recovered energy and obvious analytic skills to do a bit more digging into why we know as little as we do about PVFS/ME/CFS, and then use some of his equally obvious presentation skills to draw attention to the mess. But first of all, if you're reading this, maker of this video, try and get well!
 
Ravn said:
This is actually quite good, especially for something produced by somebody who, presumably, has only been digging into the whole PVFS/ME/CFS murky mess for a few weeks. His previous video did have a few typical "beginner's mistakes", but this second one is much better, showing somebody who's a quick learner and also somebody who's prepared to listen and revise/refine his ideas.:thumbsup:

He hones into some key questions (see screenshot) and soon finds out that the answer to #1 is "stuff all", which necessarily means the answer to #2-3 is "we haven't got a clue". Maybe the planned OMF post-covid studies will finally shed a little overdue light on the relationship between virus, PVFS and ME.
View attachment 11095

He also understands the delay factor in PEM and the importance of rest and staying within your individual activity limits, putting to shame the far too many people who purportedly have been working in the field for decades and who still don't get this. (Though it is good to see that there are still a number of doctors who advise their post-covid patients to rest lots, according to some of the reports in the video.)

I hope he recovers soon but doesn't forget his experience too quickly. It would be great if he would then use some of his newly recovered energy and obvious analytic skills to do a bit more digging into why we know as little as we do about PVFS/ME/CFS, and then use some of his equally obvious presentation skills to draw attention to the mess. But first of all, if you're reading this, maker of this video, try and get well!
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Who is the guy who made the video?
 
An opinion piece in the Swedish newspaper Expressen. It's written by Hege Magnusson, a nurse and administrator for the Facebook group Covid-19, Vi som är drabbade (Covid-19, we who suffer from it). The Facebook group has over 8 ooo members.
She calls for the public health authority and other experts to recognise all the patients who are suffering at home with an incredible number of different symptoms. She says many have symptoms lingering even after 50-90 days.

She says people are complaining of symptoms as
- Extreme fatigue
- Sore throat coming and going
- Severe headache, dizziness
- Difficulty breathing, even though oxygenation is good
- Pressure over chest, pain in lungs
- Elevated temperature that goes into fever daily, many weeks in a row
- Chills and hot flashes, without high temperature
- Resting heart rate over 100, palpitations
- Numbness
- Blood clots
- Pain in blood vessels, despite perfect blood tests
- Confusion

Vi är tusentals som aldrig tycks bli friska - hjälp oss!
google translation: We are thousands who never seem to recover - help us!
 
The #MEAction Network
43 mins ·
#MEAction Co-founder Beth Mazur and Brian Vastag, a science reporter at The Post from 2011 to 2014, write about the devastating long-term illnesses like ME that can following viral infections.

"In the fall of 2009, one of us, Beth, was hit by an illness she suspects was H1N1 flu, which was circulating then. In 2012, the other, Brian, developed a sudden fever, which his doctors said was also likely of viral origin."

"Given the historical neglect of ME/CFS — very few medical students even learn about it — many physicians and researchers who follow Covid-19 patients may think they’re discovering a new phenomenon in the patients who are slow to recover. Instead, they’ll be rediscovering a common illness that’s been known, and neglected and afflicting many people — for decades."

The first step is to get the word out.

Please share today.

Doctors, people who had Covid-19, and their family members need to know what ME is and how to recognize symptoms so they get the urgent care they need.
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https://t.co/rp1NzNiQrt?amp=1
 
Trish said:
That's an excellent Washington Post article by Brian Vastag and Beth Mazur, drawing the parallels between post covid symptoms and ME/CFS and describing research projects under way by NIH, Ron Davis, Mady Hornig and others to investigate post covid patients.
https://www.washingtonpost.com/heal...d5edb2-a02c-11ea-b5c9-570a91917d8d_story.html
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Interesting:
The NIH is also funding long-term research on a cohort of up to 2,000 covid-19 patients who were hospitalized in the United States, said Joseph Breen, an immunologist at the National Institute of Allergy and Infectious Diseases. “Those people can be tracked,” Breen said. “If you do a longitudinal follow-on study correctly, it can really help understand the rate of ME/CFS and other problems that may be present. We’re going to learn things we never learned with SARS and MERS,” the two previous illnesses caused by different coronaviruses earlier this century.
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Technically this is not an ME study but it would likely qualify as the largest study on the disease to date. If the funding is truly adequate anyway. I would like to know more about that study, who is funding it and to what amount? Because the money can never be found when it comes to us, then suddenly it can be when it technically doesn't concern us but overlaps completely. Not exactly an optimal system you got there, chaps.
Mady Hornig, an immunologist at Columbia University’s Center for Infection and Immunity, said her group plans to follow covid-19 patients with neurological symptoms, including loss of smell, to see who develops ME/CFS. She plans to recruit African American, Hispanic and American Indian patients, who are underrepresented in ME/CFS research. Hornig herself has had covid-19 symptoms for six weeks, including a racing heart beat, which can signal issues with the autonomic nervous system.
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I hope she recovers well and this experience only provides insight to her work, not an obstacle.

Great article. As usual nothing beats the patient perspective, there's a lesson in there somewhere. All it took was the single most disruptive event in human history. I'm not in charge of anything related to this but I may just suggest this is not an optimal way of doing things. It's pretty much the worst possible way, in fact. Just saying.
 
rvallee said:
Great article. As usual nothing beats the patient perspective, there's a lesson in there somewhere. All it took was the single most disruptive event in human history. I'm not in charge of anything related to this but I may just suggest this is not an optimal way of doing things. It's pretty much the worst possible way, in fact. Just saying.
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I’m confused: what are you saying is pretty much the worst way of doing things?
 
rvallee said:
That it takes the single most disruptive event in human history for medicine to "discover" something that has been denied for years despite ample evidence.
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There have been discussions for a long time between patients, though not everyday discussions, that a pandemic or major outbreak leading to mass ME might be necessary to make people play attention. This does not make it desirable. Its more a silver lining situation. The tragedy is if the medical research community had taken it seriously thirty or more years ago, the world would be much better prepared. Maybe they will have learned something before the next pandemic, or the one after that ...

I can only imagine what the long term fallout of huge numbers of newly disabled would be in or after a general economic meltdown. I am not optimistic. I can however hope that it wont happen or wont be as bad as I suspect it might be.
 
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