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

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rvallee said:
The idea is to help patients “build their own healing capacity,” said Dr. Wayne Jonas, former director of the National Institutes of Health’s Office of Alternative Medicine
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What kind of psychological mumbo jumbo is “building your own healing capacity”?!? Would you say that to cancer patients, heart disease patients, MS patients, lupus patients? Please go away and build your own critical thinking capacity.
 
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John Mac said:
What If You Never Get Better From Covid-19?
Some patients could be living with the aftereffects for years to come. Recent research into another persistent, mysterious disease might help us understand how to treat them.

https://www.nytimes.com/2021/01/21/magazine/covid-aftereffects.html
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I generally don’t write comments but had to reply to a comment on the article calling it “sensationalist” and citing a single medRxiv preprint study from earlier last year suggesting 2.5% of symptomatic COVID cases result in LC. My reply under “Leo”

https://nyti.ms/3c2HW4V#permid=111219638
 
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No mention of ME, even though it's in on the Center for Infectious Disease Research and Policy website.
Throughout the coronavirus pandemic, public attention has mainly focused on the number of people who become severely ill and die from COVID-19. But what's become clear in recent months is the large and growing group of people who continue to deal with prolonged symptoms long after their original illness.

In a recent study posted on the preprint server medRxiv, analysis of an international survey of more than 3,700 respondents with COVID-19 found that over two-thirds were still experiencing numerous symptoms at 6 months, with significant impacts on patients' lives and livelihoods. Respondents with symptoms for more than 6 months said they are experiencing an average of nearly 14 symptoms across multiple organ systems.
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https://www.cidrap.umn.edu/news-per...ts-clinicians-seek-answers-mystery-long-covid
 
I am always surprised that there always seems to be surprise that many long covid sufferers did not initially undergo hospitalisation. I wonder how many of us initially had an illness requiring hospitalisation. One might even argue that most of those at the RFH would not have been hospitalised had they not been staff requiring quarantine.
 
Letter to editor: Persistent fatigue in patients with COVID-19
We wish to discuss the condition of persistent fatigue following the recovery of COVID-19. In fact, available studies have reported fatigue as the most prevalent symptom that persists in patients who recovered from COVID-19, which has now been termed as ‘long COVID’. An Italian study of 179 patients reported that 87.4% of patients had persistence of at least one symptom in 60 days after their initial COVID-19 diagnosis, with fatigue being the most prevalent symptom (53.1%).2 Likewise, Townsend et al which evaluated 128 patients who recovered from the acute phase of COVID-19 reported persistent fatigue in 52.3% of patients at 10 weeks after initial symptoms.3 Moreover, an analysis of data from 4,182 incident cases of COVID-19 logged in the COVID Symptom Study app revealed that 13.3% of cases had symptoms lasting >28 days, with fatigue being the most commonly reported symptom (97.7%) among those who had long COVID.4
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https://www.rcpjournals.org/content/clinmedicine/21/1/e117
 
alex3619 said:
"Over 60% of respondents said they aren’t getting the treatment they need." I don't think most people are yet aware that the treatments they need may not even exist yet, and that much more research may be required. SOME issues from blood clots, lung scarring etc. probably have more than a little research, but as we know many of the other symptoms are probably in research limbo so far as diagnosis, treatment and cure are concerned.
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Many have post-infectious POTS, unfortunately many won't be properly diagnosed and won't receive treatment. I have no clue what treatments will be available for them in the future, but with all the rehabilitation centers opening up I'm guessing it isn't going to go well for them.

A young women here said she saw 10 doctors and is receiving "IV treatments" and other 'stuff', she lives in/near a major large city, so location is a factor too.
 
Fauci interviewed, small segment on Long Covid. Mentions extreme fatigue, muscle pain, temperature dysfunction (weird focus but OK autonomic dysfunction) and brain fog. Doesn't mention this has been known for decades, but that would look very bad so obviously people will be mum about it.

Mentions major investments and resources. No idea if this only refers to the $1.15B or more.



https://www.msnbc.com/rachel-maddow...ing-lingering-effects-of-covid-19-99905093945
 
Andy said:
Letter to editor: Persistent fatigue in patients with COVID-19

https://www.rcpjournals.org/content/clinmedicine/21/1/e117
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The authors seem to happily recommend low dose hydrocortisone or Ritalin

"A double-blind, randomised, placebo-controlled crossover study of 60 CFS patients evaluated treatment with methylphenidate (10 mg twice daily) compared with placebo and reported clinical improvement in 17% of patients.7"

Ref 7 = https://www.sciencedirect.com/science/article/abs/pii/S000293430500656X
"Random assignment to 4 weeks treatment with methylphenidate 2 × 10 mg/day, followed by 4 weeks of placebo treatment, or 4 weeks of placebo treatment, followed by methylphenidate treatment. Fatigue and concentration were measured with a Checklist Individual Strength (CIS) and a Visual Analogue Scale (VAS)."

Wonder how people were after the 4 weeks.
 
These two observations mentioned in the NYT article seem like a bit of a conundrum:
Hundreds of patients, most of them women, showed up soon after the center’s doors opened. To the doctors’ surprise, however, many of them had experienced only mild cases of Covid-19. They hadn’t been hospitalized. They were relatively young and otherwise in good health, without the underlying conditions like obesity and diabetes that are known to make Covid-19 worse. And yet, months after their bodies had seemingly fought off the coronavirus, they still felt quite ill.
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But one factor [in the Dubbo study] was broadly predictive: how sick patients became during the initial phase of their illness. The sicker they got, the more likely they were, after the infection itself had cleared up, to develop fatigue, pain and problems with memory and concentration.
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[my bolding]

Perhaps the severity of initial acute symptoms is only weakly associated with the onset of ME/CFS following infection, or perhaps long Covid and ME/CFS are similar but not identical, or maybe there is something particularly unique about SARS-CovV-2 that makes it unusually good at inducing persistent symptoms regardless of initial severity. It would be interesting to know what that attribute is.

ETA: Obviously, the genetics of the patient could have a lot to do with this.
 
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Jonathan Edwards said:
It may be that 'severity' for Covid largely relates to pulmonary involvement with hypoxia - which is the main reason for hospital care. That may not correlate closely with the systemic features that Covid and mono share - fever etc.
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Yes, a respiratory virus may push a focus on lung problems, with other problems being discounted. Whatever is the issue with ME inducing viruses it almost certainly is not about lung problems. What is happening in the brain and immune system is still probably largely overlooked. When will we see deep case studies on patients currently fighting a COVID infection, including gene expression studies, proteomics, cytokine panels, etc?
 
Jonathan Edwards said:
It may be that 'severity' for Covid largely relates to pulmonary involvement with hypoxia - which is the main reason for hospital care. That may not correlate closely with the systemic features that Covid and mono share - fever etc.
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True - the notion of "severity" is no doubt relative. I'd certainly guess that the vast majority of the people who develop post-infectious ME are never actually hospitalized for their initial infection. On the other hand, I don't know if the "mild" Covid cases mentioned in the article are usually hospitalized either.
 
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