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

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.

 

Interesting tweet from an MP (have no idea who he is beside the twitter bio)
ETA: It's probably NOT from any MP, but a parody account

https://twitter.com/user/status/1352584209525841921

 

Pretty sure that's not really Hollobone's account. Not many followers and profile says 'parody of a parody'.

 

Thanks, @Esther12 I'll edit that in to the post.

 

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

 

No mention of ME, even though it's in on the Center for Infectious Disease Research and Policy website.

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

https://www.rcpjournals.org/content/clinmedicine/21/1/e117

 

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.

 

https://twitter.com/user/status/1353019315067432961

 

Ah, so me is caused by not being mad enough then

 

In the message announcing the newly announced IACFS/ME 3-day virtual conference in 2021 https://www.iacfsme.org/55832-2/, they say: "A portion of the meeting will also be devoted to COVID-19 and its relevance to ME/CFS research and clinical care




Thread for the conference here:
IACFS/ME 2021 Virtual Conference August 19-21

 

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://twitter.com/user/status/1352803437340200962


https://www.msnbc.com/rachel-maddow...ing-lingering-effects-of-covid-19-99905093945

 

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:

[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.

 

Haven't watched it yet. Will likely watch tonight. 16 minutes.

https://www.youtube.com/watch?v=GryjwDcDdC8

 

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.

 

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?

 

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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