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

New article by Ed Yong on Long Covid is coming in The Atlantic tomorrow

 

New Atlas Long COVID and chronic fatigue syndrome share striking similarities

Article is about the paper "Redox imbalance links COVID-19 and ME/CFS" by Paul, Komaroff et al with commentary from Mady Hornig.

Quote
- In general, post-viral illness is a remarkably understudied field and growing concerns over long COVID offer the biggest research boost on the topic in decades. Mady Hornig, a ME/CFS researcher from Columbia Mailman School, welcomes the long-overdue attention and suggests insights gleaned from novel studies into long COVID could hopefully lead to new treatments for all kinds of post-viral illnesses.

“One of the interesting things we’ve seen so far is that some COVID-19 patients who initially seem to be on the path to developing ME/CFS actually start to feel better after four or five months,” says Hornig. “We think that looking closely at these people and comparing them to others who eventually do get diagnosed with ME/CFS could yield valuable insights. Might there be something distinct about their immune systems that makes them more resilient? That could be the kind of discovery that opens up new possibilities for treatment.”

ETA: Link to article is also shared in the thread about the paper here

 

The Scientist Mechanisms of Long COVID Remain Unknown but Data Are Rolling In

Have only skimmed this article, but it looks thorough and interesting. ME is mentioned briefly towards the end-

Quote:
Several researchers, Akrami and Russell Low included, are also looking to other post-viral syndromes to try and understand long COVID. The symptoms of myalgic encephalomyelitis/chronic fatigue syndrome(ME/CFS), a condition marked by debilitating exhaustion and cognitive problems, are very similar to those of long COVID, and ME/CFS can also arise after viral infections. “I think the underlying pathophysiology [of ME/CFS], while complex and incompletely understood, is similar” to that of long COVID, says Low. Several research efforts are now exploring possible links between ME/CFS and long COVID.

 

Yes, might be what Horning describes, distinct differences in the immune system, but it shouldn’t be underestimated that a SARS-Cov-2 patient probably will have a much better start, type Garner, than the usual ME-patient. That better start is due to swift certain diagnosis and if there is one thing we’re learned from ME and lack of optimal outcome, it is that time is of essence early on. So there should be no doubt of the massive negative impact a push through strategy can have, exactly due to uncertain diagnosis, valuable time missed, lack of good advice, often the direct opposite. So the initial phase will often be like night and day for different patients. And one can just speculate how much damage can be done early on if doing exactly the opposite of what is needed.

In an ideal clinical world, one where patients couldn’t be harmed by different strategies, I would like to see someone study two ME-patients, different strategies early on and the immune system more closely.

- one the Garner/long Covid optimal style, being careful initially for a little time as described over, and

- one the opposite way, as most ME-patients experience, the just “go on”, do your best, don’t take it particularly careful, just push through and let see how it goes...

 

The Atlantic Long COVID Is Everyone's Problem by Ed Yong

quote:
One of the biggest misconceptions about long COVID is that it is entirely new. The SARS-CoV-2 coronavirus may have emerged in 2019, but many infections can lead to similar long-term symptoms. Long COVID shares traits with chronic illnesses including ME/CFS, fibromyalgia, mast cell activation syndrome (MCAS), and dysautonomia including postural tachycardia syndrome (POTS). Although long COVID isn’t identical to any of them, the overlaps are substantial. “There are likely several things unique to COVID-19, but we’re not starting from scratch,” McCorkell told me.

For example, many long-haulers have the hallmark symptom of ME/CFS—post-exertional malaise, in which mild bursts of activity trigger dramatic crashes. Clusters of ME/CFS have followed many disease outbreaks, including the original SARS epidemic, in 2003. And when the pandemic began in 2020, ME/CFS researchers and patients saw long COVID coming before anyone else did. “For years, we’ve been shouting from the rooftops that this is something that happens after an infectious onset, but it’s been hard to get people to pay attention,” Michael VanElzakker of Harvard, who is one of the few scientists to study the condition, told me. Much like long COVID, ME/CFS has been trivialized as a psychological condition, its patients mocked and its researchers underfunded. “It’s a terrible outrage,” Maureen Hanson, a molecular biologist at Cornell who also works on ME/CFS, told me. “If we had a better understanding of it, we’d be ahead of the game” with long COVID.

______________
This article is discussed further in its own thread here:The Atlantic: Long Covid is everyone's problem, 2021, Ed Yong

 

A worrying sign, the main Covid long hauler sub-reddit has been quarantined, likely following complaints from LC deniers.

There was always a possibility that responses to Covid misinformation would be abused this way. This is done by Reddit admins.

I think this works fine if you click on "Continue": link because the forum embeds posts but it doesn't work.

Seems to be related to this announcement.


Edit: quarantine was removed, fortunately

 

The University Hospital of North Norway (UNN) announces that they are opening a regional clinic for people with long term symptoms after covid-19. They write that these patients can have several of the same symptoms as CFS/ME patients and patients with severe idiopathic fatigue; headache, cognitive issues, fatigue, anxiety and breathing difficulties.

They offer interdisciplinary assessment and help with coping to CFS/ME patients, and therefore have relevant experience to provide an offer for patients with long lasting symptoms following covid-19.

They work from a holistic model where physiological, psychological and social factors are believed to be connected and influence each other.

UNN oppretter regional covid senfølgeklinikk
google translation UNN establishes regional covid clinic for long term symptoms

 

Long Covid care: ‘There has been a sense of swimming upstream on my own’
One patient tells of 18-month waiting time to access a Covid clinic, says Mayo GP

https://www.irishtimes.com/news/hea...ense-of-swimming-upstream-on-my-own-1.4658009

Also:

 

A recording of this webinar - The Long Haul: What Every Person Should Know About Long COVID - is now available on YouTube:

https://www.youtube.com/watch?v=1rSb2Ay8AWo

Code:

https://www.youtube.com/watch?v=1rSb2Ay8AWo

 

COVID long-haulers at risk of kidney damage — even those who had mild cases, study says
BY KATIE CAMERO

UPDATED SEPTEMBER 01, 2021 07:08 PM
https://www.miamiherald.com/news/coronavirus/article253922863.html

No mention of ME/CFS or ME/CFS symptoms, so perhaps there is a better thread for this

 

"Post-COVID conditions" is the theme for a CDC Case Challenge titled: A woman with fatigue, palpitations, and headache in Medscape.

Emphasises PEM and OI, ME/CFS is mentioned briefly as a similar condition and the article links to useful resources. Elizabeth R. Unger is among the authors.

 

If they keep calling it "chronic fatigue", they are basically creating all new cracks and widening the existing ones. Or sabotaging the stools, I guess? Weird expression in this case.

Maybe, I don't know, don't? Good grief the average stone can probably be squeezed for a good liter of blood before you'll get even 1% of medical professionals to get the basic facts right.

 

DW News - Recovered, but still not healthy: How long COVID affects people around the world

Case is a woman who has been diagnosed with CFS after Covid-19. Interview with dr. Carmen Scheibenbogen who presents three hypothesis for ME. Interview with dr. David Strain who says 1/3 seems to make a full recovery, 1/3 make good enough recovery to go back to normal activities and 1/3 are still suffering very badly 12-16 months after the infection. There's also a Q&A section.

https://www.youtube.com/watch?v=KuVh6mxBBZw

 

and replaced in some cases by the people who have had adverse reactions to the vaccines. I've not recovered from mine.

 

I don't think this has been posted. Not always sure if posting from the article best, or a twitter thread with highlights.

https://twitter.com/user/status/1433407461646651394



“I can’t believe how badly I was treated” – results and recommendations from GMLC’s Long Covid and Work survey
https://www.gmlaw.org.uk/2021/09/02...ations-from-gmlcs-long-covid-and-work-survey/

 

Article on ESPN about a college (American) football athlete. There are still people pushing the idea that this is deconditioning. It's hard to overstate the scale of failure here, how absurdly invalid this assumption is is only second to how commonly it is believed. There is simply no comparison anywhere in any other profession of subject-matter experts spewing complete nonsense about their expertise.

The number of people who follow ESPN is probably larger than the number of people who read the major newspapers in the US. This reaches a lot of people who simply aren't interested in the news.


'Is this my life now?': Clemson defensive end Justin Foster's -- and my -- struggle with long-haul COVID
https://www.espn.com/college-footba...end-justin-foster-my-struggle-long-haul-covid


https://twitter.com/user/status/1433775944171495425

 

Don’t know anything more. I presume this is in Canada not the UK:
https://twitter.com/user/status/1434195282615574529

 

She says she's taking PEM in account, maybe someone can do a screensave or something for later evidence if needed?