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

Status
Not open for further replies.
Trish said:
Why do you say it's complete trash?
Click to expand...
I wouldn't say complete trash but the problem I have with it is this part:
One of the key symptoms that occurs in people with ME/CFS is Post-Exertional Malaise or PEM. This is when there is an increase in fatigue, along with flu-like symptoms in response to activity. The activity that provokes this escalation can be simple everyday tasks including thinking activities as well as physical activity. The increase in fatigue is commonly delayed by 24 hours or more, so a typical pattern is for someone to try to do a bit more on a good day and then wake the next day feeling much worse, often with a sore throat or sore glands and generalised achiness.
Click to expand...
There's no mention of long term harm or damage which I believe is a key feature of ME. "Generalised Achiness" doesn't represent what I experience from exertion, it trivializes it. They make it sound like a bit of muscle ache that a healthy person gets after going to the gym, something inconsequential. Crucially there's no mention of exertion causing even short term lowering of the patient's PEM threshold. People need to understand that we have consequential symptoms.
 
Trish said:
Why do you say it's complete trash? It seems a fairly sensible approach to post viral fatigue, recommending lots of rest, and taking any increase in activity once you feel better, both mental and physical activity, slowly and only if able to do it without relapsing.
Click to expand...

I agree that this advice seems reasonably sensible. I do wish it wasn't written in such a (p-m-)aternalistic style as if the advisors knew what to do when nobody does. But at least the advice is mostly based on patient experience. It would have been even better if they just quoted patient experience.

I also thought that the idea that it was written by people who deliver 'effective' care was a bit ironic.
I would say B+ for effort here.
 
Trish said:
Why do you say it's complete trash? It seems a fairly sensible approach to post viral fatigue, recommending lots of rest, and taking any increase in activity once you feel better, both mental and physical activity, slowly and only if able to do it without relapsing.
Click to expand...
It's vague and all over the place. And we know this is not what is actually advised in clinical practice, making this even more confusing.

And poorly written. Not super important but, still.
 
Mij said:
It was tweeted from a suspended account.
Click to expand...
Thanks, @Mij. It was fine when I posted it, I even answered it. Perhaps Twitter doesn't like Long Covid being looked at? There were a number of people responding when I last looked at it, everything seemed as sensible as you might expect (there's always somebody who disagrees - possibly they reported the post?). It's a poster I've been following for a while too. Sigh.
 
ladycatlover said:
Thanks, @Mij. It was fine when I posted it, I even answered it. Perhaps Twitter doesn't like Long Covid being looked at? There were a number of people responding when I last looked at it, everything seemed as sensible as you might expect (there's always somebody who disagrees - possibly they reported the post?). It's a poster I've been following for a while too. Sigh.
Click to expand...

I was able to read the tweet when you first posted it. It disappeared pretty fast.
 
rvallee said:


Long thread. Lots of replies. Could as well be #MEAwarenessHour for its substance.

Now let's compare to how physicians typically perceive people suffering from those symptoms:

View attachment 12065
Click to expand...

how brave to make such a post whilst hiding their identity no doubt this idiot has never actually listened to any patient with an m e or p v f s diagnosis i doubt this is a post by a medical doctor .this is aimed at the person replying on the above post not the original poster .
 
Last edited:
alktipping said:
how brave to make such a post whilst hiding their identity no doubt this idiot has never actually listened to any patient with an m e or p v f s diagnosis i doubt this is a post by a medical doctor .
Click to expand...
Oh it was on Reddit so anonymous is the norm. On the medicine forum talking about Afflicted, where they are very hostile to non-physicians so I would assume actual professional. I did not notice much in the way of comments that disagreed with the general tone of that. At best there was something kind of like pity, but not quite.

Medicine's perception of chronic illness is so FUBAR that actual physicians thought a deliberately misleading dramatization with intent to mock and malign was spot on. Right there with saying Reefer madness is realistic. Blegh. Reminds me of how imperial colonists talk about the native population, all caricatures of human behavior, where the common feature is dehumanization, not seeing some people as actual people with agency, as equals worthy of respect.
 
As Their Numbers Grow, COVID-19 “Long Haulers” Stump Experts

https://jamanetwork.com/journals/jama/fullarticle/2771111

“Most of the patients that I see who are suffering from [post–COVID-19] syndrome were not hospitalized,” Jessica Dine, MD, a pulmonary specialist at the University of Pennsylvania Perelman School of Medicine, said in an interview. “They were pretty sick, but still at home.”

Why some previously healthy, often young, adults still haven’t recovered from the disease has stymied physicians.
Click to expand...
More than a third of them hadn’t returned to their usual state of health 2 to 3 weeks after testing positive, the researchers wrote in the Morbidity and Mortality Weekly Report. The older the patients, the more likely they were to say they their pre–COVID-19 health hadn’t come back. But even a quarter of the youngest, those aged 18 to 34 years, said they had not yet regained their health.
Click to expand...
IIRC there was a study not so long ago, maybe a few months, that looked at all possible factors and only flagged age as having an impact on the probability of chronic symptoms.
“That certainly was a surprise to us,” Self’s coauthor and Vanderbilt colleague William Stubblefield, MD, an emergency medicine specialist, said in an interview.
Click to expand...
And yet what follows in the article clearly spell out that they should not have been.
Francis Collins, MD, PhD, director of the National Institutes of Health (NIH), blogged about the survey in September. “Because COVID-19 is such a new disease, little is known about what causes the persistence of symptoms, what is impeding full recovery, or how to help the long-haulers,” Collins wrote, noting that the Body Politic and its international Patient-Led Research for COVID-19 group are now conducting a second survey of long haulers.
Click to expand...
I don't know if he's dense or being a jerk here but Collins is massively annoying given what happened in the past year or so. National Institute of Horseshit more like it. Sorry but this is infuriating, his empty promises ring even more hollow given this.
Many of the clinic’s patients are also still short of breath. This could be due to the deconditioning seen with any lengthy illness, Hope said, or to infection-specific conditions, such as postviral reactive airways disease, lung fibrosis, or viral myocarditis. Hope said that he’s seen at least one patient with no history of heart disease who developed postviral heart failure.
Click to expand...
Jesus fuck, these people. They tell the patients presenting with symptoms to wait 6 months then try to pin the initial symptoms on the fact that they wasted 6 months in the hope it would magically go away. Get your affairs in order, people.
An intriguing idea is taking shape. During the July webinar, Fauci noted that some long haulers’ symptoms like brain fog and fatigue are “highly suggestive” of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

New York–based psychiatrist Mady Hornig, MD, a member of Columbia University Medical Center’s epidemiology faculty, has long studied the role of microbial, immune, and toxic factors in the development of brain conditions such as ME/CFS, whose etiology and pathogenesis are unknown. Now she’s looking at these relationships not only as a physician and scientist but also as a long hauler.
Click to expand...
Her doctors told her they didn’t have a better explanation than COVID-19 for her symptoms, which have also included oxygen saturation levels as low as 88% and 8- to 10-minute tachycardia episodes that still send her heart rate to 115 to 135 beats per minute at least once a day and leave her breathless, even if she’s sitting down. Before COVID-19, Hornig was used to working 12- to 14-hour days. For weeks after becoming ill, tachycardia would leave her so fatigued that “I felt like I could not do anything further—my brain was just empty,” she said in an interview.
Click to expand...
:(
About 3 out of 4 people diagnosed with ME/CFS report that it began with what appeared to be an infection, often infectious mononucleosis caused by Epstein-Barr virus (EBV), Hornig noted. One ME/CFS International Classification of Diseases diagnosis code even calls the condition “post-viral fatigue syndrome.” Although EBV is a herpesvirus, not a coronavirus, Hornig speculated that SARS-CoV-2 infection might reactivate latent EBV, triggering the fatigue.

To explore the idea, she has designed prospective studies with the Solve ME/CFS Initiative. The nonprofit in July launched a registry and biobank, funded in part by the NIH, to collect data from COVID-19 long haulers, as well as people diagnosed with ME/CFS and healthy controls.
Click to expand...
Hornig and other scientists point to autonomic nervous system dysregulation as the possible explanation for long-haulers’ tachycardia, extreme fatigue, and other persistent symptoms. The system controls involuntary physiologic processes such as heart rate, blood pressure, respiration, and digestion.

Stanford University neurologist Mitchell Miglis, MD, who specializes in autonomic nervous system disorders such as postural orthostatic tachycardia syndrome (POTS), recently coauthored a case report about a previously healthy, 26-year-old emergency department nurse who developed classic POTS symptoms—fatigue, tachycardia—that hadn’t resolved 5.5 months after she was diagnosed with COVID-19 in March.

“One of the most common symptoms of POTS is brain fog,” Miglis noted. “It’s not clearly related to blood flow to the brain. It’s something else.”
Click to expand...
I am so confused at the place POTS and dysautonomia have in medicine. It is commonly mocked and yet it sometimes taken seriously. Not in order, your affairs are.
Nath, chief of the Section of Infections of the Nervous System at NINDS, is planning a prospective study of persistent ME/CFS-type symptoms among people who’ve had COVID-19. “I think we need to assure the public that we are aware of the syndrome,” he said in an interview. “We’re very keen to understand what it’s about.”
Click to expand...
Only one way to reassure: mean it and actually do something about it.
Many long haulers never had laboratory confirmation of COVID-19, which, they say, adds to some health care professionals’ skepticism that their persistent symptoms have a physiological basis.
Click to expand...
One thing that’s clear, Miglis said, is that “these mystery diagnoses are real, and they’re not just in patients’ heads.”
Click to expand...
It's nice to say it but right now for all practical matters 99.9% of physicians work with this framing in mind so it would be swell if you could change that, please and thank you.
“There is definitely gender bias,” Dine said. Women with persistent symptoms are more likely than men to be viewed as “dramatic and anxious,” she said. “One of the first steps is believing them and making them feel heard. That alone helps.”
Click to expand...
Had that step been taken decades ago we wouldn't be in this mess but right now the steps that need to be taken have to account for the decades of failure in-between the time it was decided that medicine would work with the assumption that it is in our heads and today, when it is still very much the case and needs to change.
Long haulers say they aren’t always taken seriously, though, especially if they’re women, harkening back to the era when “female troubles” were written off as hysteria.
Click to expand...
Not only is that "era" still very much right now, we are literally in the golden age of conversion disorder and hysteria-by-another-name. Literally never been more influential and used in practice. That era is right now. Happening as I write this and again as you read this and for the foreseeable future until the failure of the last several decades leads to massive systemic reform.

I may have quoted too much of the article, sorry. It had frustrating bits but overall a pretty good article.
 
Last edited:
Best wishes to Hornig - I hope that she's taking time to relax for herself, as well as doing her research related work. I imagine that her ME/CFS work would make her own symptoms even more worrying, but I hope that isn't leading her to push on past her limits with her own work. Fingers crossed she'll be one of the many who do just naturally recover (even if it takes longer than normal).
 
It is interesting that they are observing, and apparently taking seriously, the age differential. I think it was the 1961 paper into Asian flu by Imboden, Canter and Cluff, though not necessarily in that order, that concluded that that prior psychological vulnerability was the cause of enduring symptoms, but they also indicated a difference in the average ages of those who recovered and those who did not. Naturally the latter finding was never mentioned again, so far as I can tell.
 
More about viral myocarditis. Cardiologists say that it wouldn't correlate with LongCovid, and that mild viral myocarditis with other viruses is probably much more common than we realise.

Prof Beverly Hunt has said something similar about embolism. They need to look at incidence in other viral pneumonias, to know whether it's a genuine increase with Covid19, or just a large numbers effect.



https://www.theatlantic.com/health/...eart-pandemic-coronavirus-myocarditis/616420/
 
Status
Not open for further replies.
Back
Top Bottom