Long Covid in the media and social media 2022

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This is a bizarre article, very revisionist. It glosses over the fact that Mayo is very committed to all those mistakes and routinely treats chronic illness as psychogenic. It's a large organization so has many opinions but most of the claims in here are aspirational, what could be, but mostly the opposite of what patients experience. They talk of not repeating mistakes... they have continued to make.

Lots of chickens routinely sold before they hatch, 2nd generation chickens, that is. It's boom time, after all.

https://mcpress.mayoclinic.org/women-health/a-closer-look-at-long-haul-covid-19/
 
This Australian article warning of Long Covid is in a small, independent publication in my State. I would say it's one of the first LC articles I've seen in local media here.

Oddly, as seems to be par for the course, the journalist has chosen to focus on one of the less debilitating symptoms:

Year-long cough, chronic fatigue: SA doctors sound 'long COVID' alarm

GPs warn a “storm” of long COVID is about to hit South Australia, with doctors already seeing chronic debilitating symptoms in up to 40 per cent of COVID-positive patients.
...
Doctors say many symptoms are similar to those of chronic fatigue syndrome.

Previously fit patients become breathless walking even just a few metres, others struggle to get out of bed.
...
“There’s frustration they can’t get on with what they want to do and a sense of anxiety about will it ever settle, like am I going to be like this forever?” Pearce said.

“Because you can’t work out who’s going to be the one who’s going to have it forever, you just don’t know.

“People are saying nobody told me about this – they all talked about the acute disease.”

Pearce warned that as COVID continues to spread widely in the South Australian community, “a storm is coming with long COVID”.
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South Australia's experience with LC will be an interesting example to watch. Borders were closed early in the pandemic which meant total Covid infections were initially low (around 1000 people who were mainly in quarantine when they returned from overseas).

After borders were opened in mid December 2021, we have had 335,000 cases in 4 months (total pop. 1.7 million). Over 90% of the population is fully vaccinated and over 99% of infections are Omicron.

The GPs interviewed in the article are clearly exceptions to the norm. People on social media with covid post-viral symptoms are complaining of being dismissed and brushed off by their GPs. To make matters worse, there are very few GPs in Adelaide who have a reputation for taking ME/CFS seriously.


 
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Podcast JOSPT Insights: Ep 77: Less is more - the mindset shift clinicians need for long COVID, ME and other post-viral illness, with Dr. Todd Davenport

"How prepared are you to support someone who is living with post-exertion symptom exacerbation? Dr Todd Davenport wants to start a conversation about re-imagining the way most of us have thought about fatigue, physical activity and exercise."

ETA: This is the first episode of two with Dr. Todd Davenport. The next will be focusing on pacing.

Copied to this thread:
JOSPT: Lessons from ME/CFS for Long COVID - 4 part series, 2022, Davenport et al
 
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Kalliope said:
Podcast JOSPT Insights: Ep 77: Less is more - the mindset shift clinicians need for long COVID, ME and other post-viral illness, with Dr. Todd Davenport

"How prepared are you to support someone who is living with post-exertion symptom exacerbation? Dr Todd Davenport wants to start a conversation about re-imagining the way most of us have thought about fatigue, physical activity and exercise."

ETA: This is the first episode of two with Dr. Todd Davenport. The next will be focusing on pacing.
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I'm not the biggest fan of Todd, but I thought his interview was very good!

Alternative source: https://podcasts.apple.com/au/podca...eed/id1522929437?i=1000557078368/id1522929437
 
It's good that they're sounding the alarm about the horse possibly bolting out of the stable. But the horse has already smashed a hospital, taken a school hostage and is doing more mayhem that's all over social media already.

But it's nice that they're sounding the alarm, having dismissed people screaming about this every step the horse took, with live footage of the hospital being destroyed long ago.

It's really good that we have experts who can look back at a problem people were screaming about and think: "uh, hey we can't let that horse loose" and start looking intently at the stable for its exit. But of course it has already bolted years ago, so they can't be sure when it will ever come out.
 
I just heard on Radio National - Radio New Zealand - this morning, a replay of an interview with one of the members of New Zealand's national rugby team. These players are arguably the highest profile athletes in NZ. The interviewer asked 'so, you must be more worried about Long Covid than Covid?' and the athlete agreed.

He went on to say that they have very rigorous protocols to deal with members of the team who get Covid-19. He said that it's very similar to how people with concussion are dealt with, a very gradual return to training with monitoring for set backs. He said that they start with a walk and see what effect that has.

The impression I was left with was that the potential for Long Covid was being taken very seriously, and the underlying assumption in trying to prevent it is that a return to full training shouldn't be rushed.
 
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https://www.bloomberg.com/news/arti...ing-in-feces-offers-clues-to-long-covid-cause

Coronavirus Persisting in Feces Offers Clues to Long Covid Cause
  • Scientists report large study tracking RNA in human waste
  • Lingering SARS-CoV-2 may provoke damaging immune response
Covid-19 patients can harbor the coronavirus in their feces for months after infection, researchers found, stoking concern that its persistence can aggravate the immune system and cause long Covid symptoms.

In the largest study tracking SARS-CoV-2 RNA in feces and Covid symptoms, scientists at California’s Stanford University found that about half of infected patients shed traces of the virus in their waste in the week after infection and almost 4% patients still emit them seven months later. The researchers also linked coronavirus RNA in feces to gastric upsets, and concluded that SARS-CoV-2 likely directly infects the gastrointestinal tract, where it may hide out.

“It raises the question that ongoing infections in hidden parts of the body may be important for long Covid,” said Ami Bhatt, a senior author on the study published online Tuesday in the journal Med, and an associate professor of medicine and genetics at Stanford. Lingering virus might directly invade cells and damage tissues or produce proteins that are provoking the immune system, she said in an interview.
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ETA The study mentioned in the article
https://www.cell.com/med/fulltext/S2666-6340(22)00167-2


Mod note: We now have a thread for the study, here:
Gastrointestinal symptoms and fecal shedding of SARS-CoV-2 RNA suggest prolonged gastrointestinal infection, 2022, Natarajan et al
 
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This podcast is almost two weeks old, but a good interview with Long Covid researcher Ziyad Al-Aly. Both him and the journalist Faye Flam mention ME several times and that the pandemic is an opportunity to learn more about post viral illness in general.

at 11.50:
- We as a society for the past hundred years decided for whatever reason to sweep post viral illness under the rug, and not really devote a lot of attention to it, not devote science to it, not devote brain power to it. I think the silver lining here is that now the pandemic force this on our plate.

Follow the Science with Faye Flem - 65. Science vs. Long Covid w/Ziyad Al-Aly
 
Great 7 minute video from Science on Long Covid. Includes interviews with Akiko Iwasaki and Putrino (he talks among other about autonomic rehabilitation).

Avindra Nath talks about a clinical trial on immune modulating drugs.
One arm will get placebo, one arm intravenous immunoglobulin, one arm intravenous steroids (didn't catch the full name). Calls them sledge hammer approaches.

Towards the end Avindra Nath says we have millions of people suffering from similar disease, post lyme syndrome, gulf war syndrome, ME/CFS. Patients are going to all sorts of physicians and being told it's pyschological, but they have real disease.

https://www.science.org/content/article/here-s-what-we-know-about-covid-19-s-impact-brain
 
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https://www.theguardian.com/commentisfree/2022/apr/16/vaccines-long-covid-science

Vaccines are no match for long Covid. Treating it is science’s next great challenge

Failure to recognise the need for a response could be a blunder we rue for decades to come.

Whatever your standpoint on whether the pandemic is over, or what “living with the virus” should mean, it is clear some manifestation of Covid-19 will be with us for some time to come. Not least for the estimated 1.7 million people in the UK living with long Covid.

And lest any who made a full and rapid recovery from infection still wonder whether long Covid might be a self-reported creation of the indolent, this is a now a large, well-documented, convergent cluster of clear physiological symptoms, and it is common to every part of the globe affected by Covid-19. Many sufferers of my acquaintance were keen cyclists, runners, skiers and dancers, but are now disabled and deprived of their former passions, while some are unable to resume their former professions. Doctors and scientists the world over now consider this a recognised part of the Sars-CoV-2 symptom profile.
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Apparently, the CDC has closed up shop when it comes to answering questions from journalists. There was also a mention from a prominent LC advocate saying that the CDC is keeping quiet about LC because it's politically inconvenient to admit that the pandemic isn't over. This is blatant political interference in public health. Not that this is new but still, it explains a lot.

 
Long Covid and ME on BBC Radio 4 now

ETA It was two people having a conversation on their illness, one with long COVID and on with ME. It was part of a programme called the listening project which features two members of the public speaking to each other on various subjects.
The two ME/long COVID people mentioned how it affected them in their daily lives and their trouble trying to get people to accept the illness is real.
 
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As we know, Olympic and professional athletes, famous for:
  1. Being lazy
  2. Lacking self-efficacy and motivation
  3. Having crippling fears of: activity, standing, success
  4. Being women (hey at least they got that part half right)
  5. Giving up easily
  6. Catastrophizing about normal bodily senses, especially following exercise
  7. [Insert other biopsychosocial tropes]



The biopsychosocial model of illness is truly like putting a mirror to real life. You know, those mirrors that completely distort the image, like at some circuses and fairs? Or maybe one of those mirrors.
 
Kalliope said:
Towards the end Avindra Nath says we have millions of people suffering from similar disease, post lyme syndrome, gulf war syndrome, ME/CFS. Patients are going to all sorts of physicians and being told it's pyschological, but they have real disease.
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I just listened to this. Overall, I thought it was encouraging. But "post Lyme syndrome" suggests to me the kids he plays with, and I thought it concerning, since, you know, there is no such thing, and I would imagine someone of his stature would know this.

Of course, it could have simply been a lapse, a silly sloppiness, and not a political slip.
 
The continued denial and misrepresentation of Long Covid is just another chapter in a long line of suffering and neglect, and it looks just the same. The same suffering, the same patterns, the same disrespect.

Thread with many replies from pwLC (and some pwME) of where they are, of what the reality of abandoning millions of chronically ill people means in real life:

 
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