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

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Lots of stats & figures and trying to predict the impact of Long Covid.

The Spinoff: For many New Zealanders, Covid-19 will be a lifelong disease
“Now we have to talk about your quality of life.” I was 21 years old, sitting in a doctor’s office for the 13th time in 12 weeks, and I was being diagnosed with post-viral chronic pain and fatigue syndrome. What had started as an innocent sinus infection had turned into pain that never went away and the kind of fatigue that had me hallucinating on a daily basis, even though I slept for upwards of 12 hours a day.

I almost laughed out loud. Quality of life was a term used in hospices, wasn’t it? It felt ridiculously out of place. It felt like I had opened someone else’s mail. This wasn’t supposed to be happening to me.

Six years later and I still have fibromyalgia. I also feel like I’m staring down a wave of chronic illness that is hitting millions of people across the world and is about to hit us here. When the delta strain of Covid-19 finally broke through the barriers we had spent 18 months building up, I couldn’t stop thinking about long Covid in New Zealand.

I work for an actuarial consulting company, which basically means we help insurance companies manage risk.................
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https://thespinoff.co.nz/science/21...ealanders-covid-19-will-be-a-lifelong-disease

Article above based on this report (haven't read): https://www.finity.com.au/publication/dfinitive-long-covid-the-new-zealand-experience
 
Ravn said:
Lots of stats & figures and trying to predict the impact of Long Covid.

The Spinoff: For many New Zealanders, Covid-19 will be a lifelong disease

https://thespinoff.co.nz/science/21...ealanders-covid-19-will-be-a-lifelong-disease

Article above based on this report (haven't read): https://www.finity.com.au/publication/dfinitive-long-covid-the-new-zealand-experience
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Still the misconception that there is more of a chance of long covid if you had severe infection.
Longhauler social media threads are full of people who were mildly affected and didn't need hospitalisation.

Seems to be a big disconnect - you can't be this badly affected if you were not really really ill.
 
Interview with professor Brendan Delaney from the Faculty of Medicine at Imperial College London:

IPS 'With Long Covid, there's a minimisation push'

quote:
From a policy perspective, it would be naïve to think that SARS-CoV-2 would be different from other various infections. Unfortunately, there is a history of people with complex medical illness after viral illness who've been completely side-lined. It's fair to say that there is a general disinterest in biomedical research, just because it's difficult to get funding in the area.

Moreover, the area has been taken over by psychiatrists and psychologists. Clearly, labelling an illness with clear-cut biological factors as psychological and treating it only psychologically is very wrong and causes a lot of harm to many patients. The UK National Institute for Health and Care Excellence’ guidance on myalgic encephalomyelitis /chronic fatigue syndrome has just changed after a lot of controversy and 15 years of work by patient groups. And there are a lot of similarities between the two conditions.

There may well be specific features of SARS-CoV-2 about the way it affects the body biologically, the receptors it uses, the fact that it's looking more and more likely it's driven by persisting inflammation of the vascular endothelium, the lining of blood vessels. That’s throughout the body and affects all the organ systems. There’s some recent evidence pointing us in the direction of tiny blood clots causing persisting vascular inflammation.

Hopefully, a more focus on biological research will help that wider group of patients with viral illnesses.
 
Amw66 said:
Still the misconception that there is more of a chance of long covid if you had severe infection.
Longhauler social media threads are full of people who were mildly affected and didn't need hospitalisation.

Seems to be a big disconnect - you can't be this badly affected if you were not really really ill.
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I agree. This is a huge mistake.

Some Long Haulers were even asymptomatic. They only found out they had covid because they were a close contact of a confirmed case and then were subsequently tested.
 
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The possibility that I have long COVID is increasing with every advanced (i.e. not clinically available) test I've done. It's not quite 100% proven, but there are still some investigations to do that could clinch it.

In that eventuality, I will have been an "asymptomatic" case that demonstrated no nucleocapsid antibodies shortly prior to vaccination. Post-vacc I have higher than expected anti-spike Ab levels. I leave asymptomatic in quotes because last year, as a patient-facing hospital worker, at the tiniest suggestion of a sniffle or sore throat I swabbed to exclude COVID — but nothing meaningful that would have otherwise kept me home.

I think in many places there was more virus circulating in communities than has been realised.
 
What is Long COVID? Experts Explain Symptoms and Answer Common Questions

"This November, KQED Forum’s Lesley McClurg spoke with experts and a patient on what is currently known and being researched about the long-term effects of the virus:

  • Angela Meriquez Vázquez, long-haul COVID patient
  • Juliet Morgan, neurologist and chief resident of psychiatry at UCSF
  • Upinder Singh, infectious disease expert at Stanford University
  • Zackary Berger, associate professor at Johns Hopkins Institute of Bioethics
(...)

Juliet Morgan:
Unfortunately, Angela's story is nothing rare. I wish that we heard stories that were different from hers, but we had many, many participants who have been suffering and felt invisible, unheard and really invalidated.

We bring people together with knowledgeable physicians to think about how we're going to tackle long COVID together. We looked at what interventions have worked in other chronic conditions where people have increased inflammation or an over-activated, sympathetic nervous system, and we decided we wanted to emphasize interventions like mindfulness, coping strategies, and cognitive behavioral therapy.

(...)

Zackary Berger: COVID has been a social phenomenon that has affected many groups in our society. So, COVID and long COVID acts on multiple levels at once, which makes it hard to define and to treat. This means that these symptoms of long COVID are exacerbated by social phenomena, which people tend to overlook as outside the realm of medicine, and that's completely false. This leads us to a concentration on biomedical solutions when there's a lot that needs to be done for patients suffering from long COVID that's not made in a lab or found in a lab test."
 
Wyva said:
Zackary Berger, associate professor at Johns Hopkins Institute of Bioethics
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Wyva said:
Zackary Berger: [...] symptoms of long COVID are exacerbated by social phenomena, which people tend to overlook as outside the realm of medicine, and that's completely false. This leads us to a concentration on biomedical solutions when there's a lot that needs to be done for patients suffering from long COVID that's not made in a lab or found in a lab test."
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Words fail me :banghead:
 
Long Covid Patients Report Vibrations, Tremors: ‘My Body Is Moving Inside, It’s Jolting’

For Kerri McCrossen Morrison, the sensation feels like an electric toothbrush going off in her chest. The feeling is so intense that it wakes her from a deep sleep at times.

“It feels like someone put something on my bed and it’s vibrating,” she says. “My body is moving inside, it’s jolting, and at night it’s really bad.”

The unusual internal vibrations and external tremors Ms. Morrison describes have gained more attention lately among long Covid patient advocates, who are trying to raise discussion among doctors and researchers.
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https://www.wsj.com/amp/articles/lo...body-is-moving-inside-its-jolting-11640098486

As I've said before, I've had these symptoms for over two decades. Telling doctors about them results in eye-rolling and scoffing so you learn not to mention them.

If the medical profession had not spent the last 40 years telling us that it's all in our heads, maybe Long Covid patients would know what is happening.
 
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Art Vandelay said:
Telling doctors about them results in eye-rolling and scoffing so you learn not to mention them.
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That is a sure sign of ignorance. Paraesthesiae were mentioned in the symptom list of the 1933 LA outbreak, and repeatedly since. How could it be that people who were previously unaware of the existence of such possible symptoms report the same, or similar, experience? What would be the chances od them all imagining the same sensations, when there is no possibility of collusion?

And why cannot it be detected? It must lie in either the peripheral or central nervous system. It may be difficult to differentiate from background noise, but has anyone ever tried?
 
chrisb said:
That is a sure sign of ignorance. Paraesthesiae were mentioned in the symptom list of the 1933 LA outbreak, and repeatedly since. How could it be that people who were previously unaware of the existence of such possible symptoms report the same, or similar, experience? What would be the chances od them all imagining the same sensations, when there is no possibility of collusion?
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No doubt it was some sort of cultural illness or mass hysteria spread by that new-fangled internet wireless radio.
 
chrisb said:
That is a sure sign of ignorance. Paraesthesiae were mentioned in the symptom list of the 1933 LA outbreak, and repeatedly since. How could it be that people who were previously unaware of the existence of such possible symptoms report the same, or similar, experience? What would be the chances od them all imagining the same sensations, when there is no possibility of collusion?

And why cannot it be detected? It must lie in either the peripheral or central nervous system. It may be difficult to differentiate from background noise, but has anyone ever tried?
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There's a very clear trend in medicine that neurological symptoms don't count much by themselves. It's all about signs, neurology is all about signs. Zero interest in symptoms, too chaotic, too complex and for too long have been made the formula for psychosomatics. So medicine basically never pays attention to neurological symptoms unless there are signs along with it, and if it can lead to a specific diagnosis. Everything else may as well not exist, it's super weird to seen an entire discipline of science just straight up indifferent to most of the data it sees, in large part as a tradition.

I fully appreciate that following every symptom for every patient is a fool's errand but to apply this systematically is massively more foolish and has pretty much caused stagnation wherever neurological symptoms are important. Like, you know, in chronic illness.
 
More than a million of us are suffering with long Covid – yet still it’s not taken seriously
https://www.theguardian.com/commentisfree/2021/dec/22/long-covid-pandemic-support-funding

Long Covid isn’t going away soon. Post-viral syndromes are not new, but we have never seen anything on such a scale. I dread the thought of getting the Omicron variant. Who knows how my body would react this time? I first wrote about long Covid a year ago, and I could never have imagined that I would still be unable to work at this point. It seems so strange that, as a consultant in infectious diseases, I’ve had to sit out the entire pandemic from the sidelines, when I should have been playing a vital role.

When fit to work, Joanna Herman is a consultant in infectious diseases in London, and teaches at the London School of Hygiene & Tropical Medicine
​
I wonder what she thinks of her peer at Liverpool SHTM Paul Garner.

This article is interesting in another way. The author speaks of having organized a group dedicated to exercise, especially breathing exercise and singing, and how she appreciated them. Even though by her own admission it doesn't work. There must be something about the simple act of doing something that makes people more favorable to the trying, even if it fails.

They did this on their own, from a patient community. It wasn't even organized, no therapists were trying to design their own thing or push their questionnaire. And even though it's clearly ineffective, she speaks fondly of it, of trying to get some control in their lives. Which is probably what little "effect" goes into any of the trials, it's not even a typical placebo, it's more of a "there's nothing so at least trying something is better than nothing".

And sure enough the message from BPS ideologues is pretty much exactly this: it's better than nothing. Because nothing is stagnation. Something? Well that could be stagnation too, but it could be what finally works. But the only reason it's better than nothing is precisely the possibility that something will work, which is not possible with the BPS model, instead taking credit where the passage of time is favorable.
 
Still universally lacking from updates by public health, medical and government authorities, but some news media are at least slowly coming around to it. Although in this case it may have more to do with the author being a long hauler. This remains a problem, only those with lived experience understand it, but not everyone with lived experience will.


Vaccinated Isn’t Enough: Omicron Carries the Risk of Long Covid
https://www.rollingstone.com/culture/culture-commentary/covid-omicron-long-covid-risk-1274717/

But in reality, the president’s message didn’t give it to anyone straight, or even accurately. That’s because Long Covid — a dizzyingly lengthy list of new, returning, or ongoing health problems some people experience for months (and in some cases, close to two years) following their initial infection — wasn’t mentioned as one of the potential outcomes of Omicron infection. In fact, Biden didn’t mention Long Covid at any point during his speech. Here’s why that’s a problem.​
 
strategist said:
Doing something is an effective remedy for the feeling that something must be done. It's very hard to do nothing when there is a serious ongoing problem.
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Except, of course, that sometimes doing nothing is the most helpful thing to do.

I have long thought that one of the most important lessons to learn is when to keep your mouth shut and your hands in your pockets.
 
rvallee said:
There's a very clear trend in medicine that neurological symptoms don't count much by themselves. It's all about signs, neurology is all about signs. Zero interest in symptoms, too chaotic, too complex and for too long have been made the formula for psychosomatics. So medicine basically never pays attention to neurological symptoms unless there are signs along with it, and if it can lead to a specific diagnosis. Everything else may as well not exist, it's super weird to seen an entire discipline of science just straight up indifferent to most of the data it sees, in large part as a tradition.

I fully appreciate that following every symptom for every patient is a fool's errand but to apply this systematically is massively more foolish and has pretty much caused stagnation wherever neurological symptoms are important. Like, you know, in chronic illness.
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Ah but nows there's FND to capture symptoms .....what could possibly go wrong
 
https://www.theguardian.com/commentisfree/2021/dec/23/omicron-covid-19-long-hauler

"Don’t dismiss Omicron as ‘mild’. Take it from a Covid long-hauler"

"After all, those of us living with post-viral conditions – such as ME/CFS, dysautonomia, postural orthostatic tachycardia syndrome (Pots) – are used to being ignored, disbelieved, or misadvised. We were on few radars before Covid; even now, the National Institutes of Health (NIH)‘s Recover Initiative on Long Covid has all but ignored post-viral researchers and sidelined patient advocates."

"As comrades in a terrible journey, people with post-viral conditions have shared all we have learned with people with long Covid – like the importance of resting and pacing instead of pushing through ME/CFS fatigue, and the jarring reality that ME/CFS has the lowest amount of NIH research funding relative to the burden of disease in the population."
 
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