Long Covid in the media and social media 2022

Interesting for the responses. For all the claims that we are a "small vocal minority", we never actually hear from the "large silent majority" that this claim alludes to.

https://twitter.com/user/status/1513484216738086913

 

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/

 

Podcast In The Bubble with Andy Slavitt
"Everything we know about Long COVID"

Interview with Akiko Iwasaki and David Putrino
https://open.spotify.com/episode/5cQ8kWFToz9vFArMA2gE5c

(haven't listened to it yet, but looks good)

 

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:

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.

 

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

 

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

 

This podcast episode has received some criticism on Twitter for not mentioning ME even once. I believe this twitter thread is a response to that criticism:

 

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.

 

https://www.bloomberg.com/news/arti...ing-in-feces-offers-clues-to-long-covid-cause

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

 

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

 

https://www.theguardian.com/commentisfree/2022/apr/16/vaccines-long-covid-science

 

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.

https://twitter.com/user/status/1515096706429472783

 

(Buzzfeed news is separate from Buzzfeed, and sometimes produces quality journalism)

https://twitter.com/user/status/1515147365015035907

 

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.

 

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]

https://twitter.com/user/status/1515139579955007489

https://twitter.com/user/status/1515703351484325891


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.

 

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:

https://twitter.com/user/status/1514528022585659395