Long Covid in the media and social media 2023

Was the placebo lard based.

 

https://twitter.com/user/status/1646443953745534976

 

Democracy Now!: The Long Haul: Millions with COVID Face Chronic Illness as Biden Declares End to National Emergency



Not the best segment I've seen on Long Covid and ME/CFS (he describes the name ME literally, implying that it really is about brain and spinal chord inflammation). But he does explain PEM. And it's yet another example of how ME/CFS is getting a lot more attention because of Long Covid.

Note that there is a transcript of the segment just under the video.

 

Disability Denied: Unable to Work, COVID Long Haulers Face Barriers to Benefits
The long COVID crisis exposes a disability claims system in disarray.
Published on April 12, 2023
By Larry Buhl

https://capitalandmain.com/disabili...-covid-long-haulers-face-barriers-to-benefits

 

I don't think anyone has posted this article yet. From Nieman Reports (please delete if it's a duplicate).
Three Years Later, Covid-19 Is Still a Health Threat. Journalism Needs to Reflect That

Too much coverage minimizes the health risks researchers attribute to the virus

https://niemanreports.org/articles/...alth-threat-journalism-needs-to-reflect-that/

It includes this photo from the Sept. 2022 Millions Missing protest at the White House:

Here's a section that mentions Long Covid (there are several):

There's also a mention of CDC Director Walensky’s comments. For those who have forgotten she said it was “really encouraging news” that COVID deaths only happen in people who are "unwell to begin with" -- throwing all disabled and chronically ill folks under the bus.

Final section:

 

COVID-19 Strikes Again: Accelerating Dementia in the Most Vulnerable
https://scitechdaily.com/covid-19-strikes-again-accelerating-dementia-in-the-most-vulnerable/

The Effects of SARS-CoV-2 Infection on the Cognitive Functioning of Patients with Pre-Existing Dementia
https://content.iospress.com/articles/journal-of-alzheimers-disease-reports/adr220090

 

My understanding is that many viral/bacterial infections can accelerate dementia, including Shingles.

 

For a while, it seemed liked concerns over cognitive impairment were being taken seriously. It seemed as if dots were being connected. It doesn't look like medicine can keep up the motivation and is already set up to give up. The RECOVER experiment with cognitive training is a good example, but then there's stuff like this that I keep seeing everywhere, and I cannot escape the simple fact that the medical profession is completely out of its depth here, having reached the limits of what an authoritarian top-down system can do.

Research found older persons with mild cognitive impairment (MCI), a common type of memory loss, were 30% more likely to regain normal cognition if they had taken in positive beliefs about aging from their culture, compared to those who had taken in negative beliefs

https://ysph.yale.edu/news-article/...bout-aging-are-more-likely-to-recover-memory/​

Modern medicine is a truly weird mix of the some of the best science around, lots of new age pseudoscience, and lots of traditional reactionary mythology. All on the same level where it counts, in the consult room. More often than not, with the traditional mythology preventing the science from even happening.

The most likely explanation for this is the simple fact that people can assess their own performance levels rather adequately, something that keeps being validated. But somehow it's instead turned into some belief because it's considered unthinkable that patients could be capable of something physicians can't do.

 

https://twitter.com/user/status/1647366816719859713

 

expert reaction to an abstract on long COVID symptoms compared with outcomes following influenza

A conference abstract (not a published paper) presented at the European Congress of Clinical Microbiology & Infectious Diseases (ECCMID) annual meeting looks at long COVID symptoms compared with outcomes following influenza.

Prof Lawrence Young FMedSci, Virologist and Professor of Molecular Oncology, said:

“This is a conference abstract reporting on an observational study of self-reported ongoing symptoms in adults previously infected with either the omicron covid variant after vaccination or with influenza. It reports a similar incidence of post-viral effects from infection with both viruses but also concludes that the health impact from long covid may be more significant given the vast numbers of people infected with SARS-CoV-2. Many of the features of long covid resemble chronic fatigue syndrome which we know is also a post-viral condition that can
occur after infection with viruses such as influenza. While chronic fatigue syndrome has many overlapping symptoms with long covid, the distinct effects of SARS-CoV-2 infection on different organ systems including the ability of the virus to promote excessive blood clotting and to persist in our bodies are likely to result in significant lifelong disabilities for some individuals.

https://www.sciencemediacentre.org/...s-compared-with-outcomes-following-influenza/

 

And who is that "we" mentioned here? Because very few medical organizations, if any at all, recognize this, let alone know it (sometimes they put it there even though they dispute it). CFS was literally invented for the purpose of removing any connection to infections, and making it a fully generic psychosocial construct, whatever that means. And then it was distorted further by calling the whole thing "fatigue". That's very far from "knowing" this, as far as it can possibly get.

We, the patients, certainly know that, and have for decades. And were told to sit down and be quiet about it, demonized for it, discriminated as if we literally don't exist and put in the same category as flat earthers. Medicine has rejected this simple fact, and this denial is why there is nothing. The lack of accountability, even basic responsibility, remains shocking. It's really all Truthiness everywhere all the time. As if speaking the truth is the worst thing anyone can do. As if this all just happened, handed down from clouds in the sky, through fate alone.

 

quite early on in the LC 'discussions' on twitter Trish Greenhalgh said
"there isn't a 'Long Flu'".


eta: see https://www.s4me.info/threads/news-...e-cfs-2020-to-2021.14074/page-191#post-330618

 

Long Covid patients PBS Newshour (USA) April 18, 2023

https://www.pbs.org/newshour/show/long-covid-symptoms-keeping-many-americans-from-returning-to-work

 

PBS has nailed it again. Lots of good quotes:

 

Pretty good report from PBS. Newshour always does well, some of the best in the profession. Although I wish that journalists started reporting more on the broader issue, rather than on individuals. How this was warned about, how little support there actually is, how much disbelief, how little efforts there are to begin with because of widespread disbelief. Sticking to individual cases always leaves the impression that it's a few people, it's hard to put millions into context.


Anyway, another pretty good video from a science youtuber who is friends with Dianna Cowern (physicsgirl, as discussed here), mostly good although overstating the effectiveness of pacing a bit:

https://www.youtube.com/watch?v=dpjGLLbWZJ0

https://twitter.com/user/status/1648699960668594177

 

And it can also give the impression that the main message is that illness is bad and it is bad to be chronically ill and we should feel empathy, just like it is bad for people with many other chronic diseases, including cancer or MS etc. While you are very right, the main point here on top of that is actually the ignorance, widespread discrimination, the systemic injustice and pseudo-scientific bullshittery that makes the story of ME/CFS different from most other chronic diseases (at least in modern times).

This happened to me too when I did an interview in a magazine a while ago. I really wanted to talk about the deep systemic problems here but the journalist wanted to focus on me as an ill person and my personal story. I told her I don't think that's really a good angle, there are far bigger and more serious issues here, this is not simply about being ill. She said she understands but it is the personal stories that gain sympathy. So I asked how long the interview should be and then tried my best to squeeze in both types of information simultaneously.

The same stuff might be going on in all these articles and reports.

(I believe the ridiculously horrible story of what happened to ME/CFS in general is actually great material for journalists and I really hope that one day more of them will realize this and will publish many in-depth, investigative articles. There really is plenty of stuff to write about and it is quite scandalous. It is definitely the kind of story that has the potential to win awards if it ever gets made into a serious documentary. And I'm saying that as someone who watches a ton of that type of award-winning documentaries.)

 

Trial by Error by David Tuller
Some Recent Long Covid Articles from STAT/MuckRock, The Atlantic, and Nieman Reports