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

Indeed. It sounds like some sort of junior medical subculture jargon that does not even appreciate what the term is designed for. I have never heard of it used in this sense. It does not even mean non-specific. It just means no more was said. So a crossbill is perfectly well described as a bird, NOS, if in the circumstances it was just called a bird.

 

At some point she specifies that she settled on "deconditioning NOS". Which would be consistent with usual thinking about "chronic fatigue" and GET.

 

She settled on "deconditioning NOS" or her clinician settled on "deconditioning NOS"?


There is no term "Deconditioning NOS" in ICD-10-CM.

There is a Concept code: 1031000119102 | Physical deconditioning (finding) in SNOMED CT U.S. Edition but no Concept term for "Deconditioning NOS".

Concept code: 1031000119102 | Physical deconditioning (finding) in the U.S. Edition of SNOMED CT is cross mapped to ICD-10-CM's

R68.89 Other general symptoms and signs

There is also (in ICD-10-CM):

R69 Illness, unspecified
Unknown and unspecified cases of morbidity.

 

Sadly, there are lots of people who are continuing to dismiss, reject, disparage, disbelieve and troll anyone who mentions Long Covid, ME, CFS, and PVFS. I found most of the opinions on this thread horrific.

https://twitter.com/user/status/1318265682690277377


It's a public thread so it is not necessary to have a Twitter account to read it.

 

The BBC story that triggered the tweet says:
"We've got no doubt long Covid exists," Prof David Strain, from the University of Exeter, who is already seeing long-Covid patients at his Chronic Fatigue Syndrome clinic, told the BBC.

 

It uses results from the Great British Intelligence Test
https://www.bbc.co.uk/programmes/ar...T9kvGlFqd/the-great-british-intelligence-test

 

She did. Probably just rationalization, rejecting reality and substituting a more palatable fantasy.

 

I find it very telling that it's impossible to tell the "skeptical" MDs from actual trolls, they say the same thing. For the same reasons. With the same arguments.

Very telling.

 

Panel discussion with Avi Nath, along with two MDs who work at Long Covid clinics and a neurologist who would rather this is all chemical imbalance (goes on a bit about serotonin at some point, no idea where he's getting at), or something.

https://www.youtube.com/watch?v=VAlXe179OZg

I watched it last night so my memory is fuzzy but:

Doesn't reveal all that much new to people who follow the topic but otherwise a good intro on the overall issue of neurological symptoms following Covid. Also that holy crap is research funding needed because this is still at best 2% of the effort that's needed. Which is more than the usual <1% but still very much unlikely to lead anywhere.

There is some discussion of autopsies, the NIH has performed about two dozens so far. Some of the things they found is that almost no viruses are found in the brain and CSF, and there is only evidence of neuroinflammation in two places: the olfactory nerve and the brain stem. But the evidence for those is pretty bad. Can't remember who said it but they found the olfactory nerve in some patients to be so inflamed that the neural structure has basically been destroyed. But those were in severe acute cases so they could have had encephalitis, or GBS or other more pronounced inflammation.

There is some discussion of research overlapping with ME at about 20-22 minutes, from Dr Navis, as well as at about 28-32 minutes from Nath. Navis mentioned diet modifications and supplements, about working with functional medicine doctors, not very useful but she seems overall capable and understanding, just early days.

Nath does a brief mention of how other viruses are known to cause similar symptoms, how there are many post-viral syndromes with their own features but also clearly shared features.

This is all still very much at square 1. It's sad that research was never allowed to go beyond square 1. That looks very bad in hindsight, considering it was all an ideological choice.

 

Physicians Among COVID Long-Haulers

https://www.medpagetoday.com/infectiousdisease/covid19/89267?trw=no

Too bad that when he was asked about this in March he said he "hoped" it wouldn't happen, then did nothing to prepare. This is what happen when you make "hope" a plan. Hope is not a strategy.

Definitely an improvement over "unhelpful illness beliefs", whatever that means.

Has been true for decades on this issue, hence why things are currently FUBAR: because nobody listened to us, in fact gleefully bullied over our desperate pleas not to go ahead with the weird ideological stuff. A corollary of this is that patient involvement in the research is critical. It would be great if it could start. Any day now.

 

Did they say anything about what they are doing at the LongC clinic? What treatments they're offering and how they take PENE into account?

 

I found it very interesting in Dr Nath's piece where he mentioned ME/CFS to hear how viruses can affect the brain in different ways and also their different replication patterns. Probably not new to lots of people.

Also great to hear sympathetic and knowledgeable neurologists, though I admit I only listened to the bits you highlighted where ME/CFS was mentioned.

 

Not many specifics, that I can remember. There was mention of neurocognitive testing, which can definitely become useful if the right questions can be asked. This was largely about neurological symptoms and it mostly stayed on topic. There is clearly growing concern about it, especially about brain fog, or however it all fits in the various forms or definitions of dementia. Only questions with their own questions, no answers yet.

It seems mostly about support and trying to figure it out. I'm fairly sure there was mention of exercise challenges, but more about observing the effects, especially with shortness of breath, not as treatment.

Crap I watched it last night and barely remember any of it. Fun.

 

I’m obviously a bit slow because until she mentioned functional medicine in this piece, it hadn’t occurred to me that “functional” is used in this context but also in phrases like “functional neurological disorders”. I knew the term “functional medicine”, just forgot the same word is used in different ways.

 

functional another word deliberately made ambiguous by the charlatans within the b p s industry .

 

https://twitter.com/user/status/1321251450710884352

https://twitter.com/user/status/1321253533937766407

https://twitter.com/user/status/1321259982243901441

 

https://twitter.com/user/status/1321486737219244033

 

https://twitter.com/user/status/1321509045811974145

 

https://twitter.com/user/status/1321566077692846089

Probably not of interest to many people; it wanders around lots of issues with only a small amount on the symptoms, for example.