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

I like this response:



Dr Jake Suett

@jakesuett
·
5h

Replying to
@trishgreenhalgh
and
@epistatcadarn
Evolving standards, responsive to new evidence?

He is one of the doctors suffering from Long Covid and is part of a WHO group that is looking into it.

 

This page has recent updates and has been promoted in some patient communities, yesterday by Body Politic. Haven't seen any mention of budgets, how much, out of what budget.


An Observational Study of Neurologic Function After COVID-19 Infection

https://clinicaltrials.gov/ct2/show/NCT04564287

 

"A condition prior to the diagnosis of Covid-19 infection that would significantly confound interpretation of the research tests (e.g. prior diagnosis of Postural Orthostatic Hypotension Syndrome), as determined by the study investigators."
It would be nice to confirm that they in fact mean that "Postural Orthostatic Hypotension Syndrome" is not postural orthostatic tachycardia syndrome.
I am guessing that given exclusions for this study many with ME wouldn't qualify to participate.

 

I believe CDC currently only acknowledges lung problems as a long-term COVID-19 sequelae.
[ETA :] Correction - https://www.cdc.gov/coronavirus/2019-ncov/long-term-effects.html - they acknowledge heart problems also. But only heart and lung.

 

Give them thirty years.

 

It makes sense to restrict for people who only recently had Long Covid but were previously healthy, otherwise it would inject other data into it. Although it would make sense to do a special cohort for this as well, how it affects those who were already chronically ill, but as usual that would be down to funding. Always funding. Never there, that damn funding.

 

When Symptoms of Covid-19 Don’t Go Away

https://www.nytimes.com/2020/10/12/well/live/coronavirus-symptoms-covid-19-persistent.html

Weird, she did everything right according to our BPS overlords.

I have no idea where the weird obsession with a symptom, anxiety, causing other symptoms comes from but that's not how things work. Anxiety is itself a vague, subjective and very interpreted thing with no test or specific definition, largely thanks to the need to change the definition to fit the suggestion that a symptom could, somehow, cause symptoms, thus having sub-symptoms, somehow. Especially since most of the "anxiety" from Covid is likely to be dysautonomia, which explains the entire thing.

You don't say. You mean the angry "scientist harassers" were right all along?!

 

Taking pandemic sequelae seriously: from the Russian influenza to COVID-19 long-haulers

https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(20)32134-6/fulltext

A bit meandering but still kinda relevant, especially how so many people keep using the "it's not the flu" in response to all the evidence of long-term health problems, despite the fact that "the flu" is more than one virus, several of which are known to cause similar problems.

It frankly overlooks many historical factors here, largely the dismissive and obstructionist role of psychiatry in making sure medicine did not learn a damn thing out of over a century of failures, that it's not events that left us ignorant but people making conscious, deliberate choices that ignored all the relevant factors and evidence. Didn't even look at swine flu, which caused similar problems as well. Very selective.

 

https://twitter.com/user/status/1316082488012398597

 

https://www.bmj.com/content/371/bmj.m3871

Editorials
Neuropsychiatric complications of covid-19

BMJ 2020; 371 doi: https://doi.org/10.1136/bmj.m3871 (Published 13 October 2020)

1. Matthew Butler, NIHR academic clinical fellow neuropsychiatry1,
2. Thomas A Pollak, NIHR clinical lecturer in neuropsychiatry1,
3. Alasdair G Rooney, clinical lecturer in neuropsychiatry2,
4. Benedict D Michael, senior clinician scientist fellow in neurology3,
5. Timothy R Nicholson, clinical senior lecturer in neuropsychiatry1

Author affiliation

From acute delirium to long term fatigue, covid-19 has serious neuropsychiatric effects


Moderation note: Discussion about this paper continues here:
Neuropsychiatric complications of Covid-19, 2020, Butler et al

 

Jon Stone responded to this article. It's a bunch of BS, as usual.

https://n.neurology.org/content/reader-response-long-haul-covid

He is unfortunately defending a wholly imaginary version of what FND actually is, this "progress" is not real, the field has produced nothing of value and it would be devastating if these people played any role in Long Covid, as it would only serve as sabotage. The entire ideology will either be fully irrelevant or effectively sabotage all the things, there is very little in-between.

FND is, in fact, a synonym for "nothing wrong" and "nothing biological". It's the lies that really get me. The freaking bald-faced lies. They know they have to lie because their nonsense is indefensible and can't be said for what it is, so much that Stone completely misrepresents, well, everything.

 

In JS's universe the mind is the driving force causing biological (positive diagnostic features--his words). If there is actual evidence of biological changes this has generally been viewed as a biological illness requiring biomedical treatment. JS would have us believe that changing our thinking / behaviours is the answer to 'functional disorders' which is simply a phrase that is used to support this idea. There is absolutely NO scientific evidence that the mind is creating the symptoms and their biological features. None at all. It is simply assumed that this model is correct by those who believe in it. This is because it puts the treatment in their realm (mental health).

The sad reality is that for people who's illness is in the realm of mental health they are failing the many people who do not benefit from life counselling of limited and specific issues because their 'issues' are driven by biology not the mind (they present as symptoms in the mind).

For the BPS adherents it's all the same. All further investigating has stopped. There is nothing to be learned. Any technological innovations that show abnormal results will immediately be interpreted, without evidence, as what they believe. As an indication that the mind is changing the biochemistry of the person because they're mind is 'misinterpreting' 'over-focusing' on their symptoms. That is not evidence. That is interpretation based on belief.

 

This Nature editorial is from last week, but nice to see Nature still sharing it on social media and with a great quote. They have 2.1 million followers on Twitter.

https://twitter.com/user/status/1316114761289957378

 

Exactly. The "biological" factors that JS thinks are involved are "functional" pathways in the brain. He thinks there is cross-wiring in the brain, giving false impressions of symptoms.

Notably, all of the brain imaging studies have been equivocal and have not found consistent abnormalities for any specific FND.

 

URL returning a 404:

Try: https://worldneurologyonline.com/wp-content/uploads/2020/07/WFN_JJ.pdf

(page 1 and continued on page 3)

 

This described it beautifully. Everything sounds plausible when they say it but when the basic building block is wrong everything falls down.

They say that some signs found in a standard neurological examination shows the patient has FND and say this means FND is a robust diagnosis and not a diagnosis of exclusion. Yet every other sign found is taken to show a lesion in the brain. This is an extraordinary claim so there should be extraordinary evidence to prove it yet neurologists are complicit in accepting it without any evidence at all.

 

A comment from one of the editors, MD Kari Tveito, in the Journal of the Norwegian Medical Association on Long Covid.

From 2011 to 2013 she worked as senior doctor at the CFS/ME ward at Oslo University Hospital and was member of the National Competence Service for CFS/ME. She's also researched ME at the Norwegian Institute of Public Health, so it's interesting when she says:
The way in which patients who are ill, but with no objective findings, have been treated through the years does the medical profession little credit.

The text is in both Norwegian and English.

The textbook on long-lasting COVID-19 is written by the patients herself

Last, but not least, patient activists have used social media platforms to place long COVID on the agenda, while the health services quite naturally have been mostly busy handling the sickest patients during the first phase of the pandemic. To quote Tedros Adhanom Ghebreyesus, general secretary of the World Health Organization (5): ‘It appears that patients are writing the first textbook on long COVID.’ If this is so, we are witnessing more than a pandemic the like of which the world has not seen for a century; we are also witnessing a quiet revolution regarding what and who will shape the health services of the future.

 

I wouldn't hold your breath when it comes to NHS England.

£10M for kickstarting "Long Covid" specialist services across England would not stretch very far - especially if the wish list includes:

 

Doesn't seem particularly introspective of the role of that rotten National "Competence" Service, and thus her own, in not only doing that disservice but continuing it as we speak and for as long as they get away with it.

Feels a bit like Horton calling out half of all research bad but calling anyone who raises the possibility he had made one of those mistakes as dangerous revanchist activists, or whatever. Some research, not his, no, definitely not. Some people in medicine have done a disservice to some chronically ill patient, not the very misguided MUS/FND ideology that has dominated this Norwegian service and its inexplicable shilling for blatant quackery like LP.