Long Covid in the media and social media 2022

https://twitter.com/user/status/1526558378704642050

 

Bit more analysis on that:

And unfortunately, some reporters have gotten the framing of "do not want job because of long-term sickness" and retained only the "do not want jobs" part:

 

There is a US senate hearing today where Fauci was asked questions about LC, some mentions of how the $1.15B NIH program is going (not at all encouraging, they appear to be wasting the whole thing by relying on health records):

https://twitter.com/user/status/1526593445153882118

 

https://khn.org/news/article/long-covid-symptoms-seniors/

 

The Body Pro Long COVID and Cognitive Dysfunction:Searching for Answers by Terri Wilder

quote:
Wilder: You recently co-authored a piece with Avindra Nath, M.D., from the NIH, who has done work in myalgic encephalomyelitis, often referred to as ME/CFS. Many people with ME/CFS had a viral trigger to the onset of their disease. Are you consulting with ME/CFS clinicians and researchers who have seen this type of cognitive dysfunction for decades?

Spudich: [I gained a lot of] insight through working with Avi. We have another collaborator now at Rutgers who has also had some research experience in that area, and we’re putting together a grant that will be looking at COVID as well as ME/CFS.

But I think most of my insight has actually been gained from talking to community members. Clearly, there is a confluence of some of these symptoms. But I do not want to claim that I’m an expert in that at all. I’m learning. And I certainly understand the relevance of the overlap between these conditions.

The vast experience I’ve now had with long COVID patients makes me extremely sensitive to and empathetic with people who have had ME/CFS all this time and have felt that there hasn’t been concerted effort and focus in this area. That’s been very enlightening. And I think it’s a major opportunity. There’s a lot of resources being thrown into long COVID, but I do not think that it’s only relevant to long COVID. I actually think it’s going to be relevant to a whole variety of inflammatory brain diseases, not otherwise specified—and even going back to HIV.

 

White Paper Patients Diagnosed with Post-COVID Conditions - An Analysis of Private Healthcare Claims Using the Official ICD-10 Diagnostic Code by Fair Health

Summary

Post-COVID conditions, also known by such terms as long COVID and post-acute sequelae of COVID-19, have become an issue of growing national concern. Until recently, researchers were limited by the lack of a specific ICD-10 diagnosis code for post-COVID conditions. Effective October 1, 2021, ICD-10 code U09.9 was introduced for “post COVID-19 condition, unspecified.” This report is among the first to use the U09.9 code for research purposes. Drawing on longitudinal data from FAIR Health’s repository of billions of private healthcare claims, this report studies the population of 78,252 patients in the repository who were diagnosed with the U09.9 code from October 1, 2021, to January 31, 2022. That population is analyzed by COVID-19 hospitalizations, age, gender, number of days from initial COVID-19 diagnosis to last post-COVID diagnosis during the study period, preexisting chronic comorbidities, co-occurring diagnoses and risk scores. Among the key findings:

• The majority (75.8 percent) of patients diagnosed with a U09.9 post-COVID condition had not been hospitalized for COVID-19.
  
  
• Among patients who presented with a U09.9 post-COVID diagnosis, 81.6 percent of females had not had a COVID-19 hospitalization compared to 67.5 percent of males.
  
  
• The age group 36 to 50 was the most likely to be diagnosed with U09.9 post-COVID conditions; 34.6 percent of patients with that diagnosis were in that age group.
  
  
• Females were more likely than males to be diagnosed with U09.9 post-COVID conditions. Females made up 59.8 percent of the population of patients with that diagnosis, while males made up 40.2 percent. By comparison, within the cohort of people diagnosed with COVID-19 in the FAIR Health repository, 53.8 percent of patients were female and 46.2 percent were male.
  
  
• Of patients who presented with a U09.9 post-COVID condition, 30.7 percent had no identified preexisting chronic comorbidities.
  
  
• The three diagnoses most commonly co-occurring on the same claim line with the U09.9 post- COVID diagnosis in patients across all ages and genders were abnormalities of breathing (23.2 percent of patients with post-COVID conditions), cough (18.9 percent) and malaise and fatigue (16.7 percent).
  
  
• In patients with a U09.9 post-COVID diagnosis, certain co-occurring diagnoses were more common in some age groups than across all age groups: for example, multisystem inflammatory syndrome in patients aged 0 to 12; abnormalities of heartbeat in the age group 13 to 22; generalized anxiety disorder in patients aged 23 to 35; and hypertensive diseases in the age group 65 and older.
  
  
• “Other and unspecified myopathies” (diseases that affect the muscles that control voluntary movement) occurred in patients in the post-COVID population 11.1 times more often than in the same population prior to COVID-19. Pulmonary embolism occurred 2.6 times more often. “Other disorders of brain,” including post-viral fatigue syndrome and certain forms of encephalopathy, occurred two times more often.
  
  
• On average, in all age groups, patients with a U09.9 post-COVID condition had higher Department of Health & Human Services-Hierarchical Condition Category (HHS-HCC) risk scores after their diagnosis of COVID-19 than before. HHS-HCC risk scores identify which patients are likely to consume more healthcare resources and potentially incur more healthcare-related costs in the long run.

ETA: Summary on twitter by Hannah Davis

 

I'm pretty sure the 75% is an undercount. I still see a huge trend in LC forums where most have no formal diagnosis, their PCP simply refuse to use it. They'll have generic mental labels like depression or anxiety. So at best it's a study of physicians' use of that diagnostic code, whether it's accurate and comprehensive or not, impossible to tell.

 

MarketWatch 'This isn't just gonna go away': Long COVID is crashing the retirement hopes of many Americans

quotes:
“As a chronically ill and disabled person, I don’t have retirement plans,” said Davids. He was already living with several chronic diseases, including myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), before developing long COVID in 2020.

“I don’t have the capacity to save or invest like many people of my class background do,” he explained. “If people are significantly chronically ill, that is your job. Because if your job is to stay healthy and alive, then it really is a full-time job a lot of the time.”

...

Dr. David Putrino, who works at the Mount Sinai Center for Post-COVID Care in New York City, said the government needs to enforce long COVID support. For Putrino, the current situation with long COVID is reminiscent of the years it took for companies to obey the Americans with Disabilities Act of 1973, which prohibits discrimination against people with disabilities in employment, and access to state and local government programs and services. He believes there are millions of long haulers in the U.S. unable to work who need care, and they’re getting stuck with large bills because their insurers are refusing to pay, compounding their problems. The financial and retirement ramifications for individuals and the nation are bleak, Putrino added.

 

Long Covid is topic at the New York Times podcast "The Daily".
Dakota provides a summary on Twitter:

 

https://twitter.com/user/status/1527181615658635265


The damning testimony NHS staff have submitted to the Covid inquiry | ITV News

 

I have a few ideas...

https://twitter.com/user/status/1527491858171052035

 

So the UKHSA asked a prominent pandemic, and LC, minimizer to talk about Long Covid in children, who is also the clinical lead for Covid in children. Cool. Cool cool cool.

There's also a huge infectious disease conference happening soon that invited 2 prominent LC deniers and general pandemic minimizers. Awesome.

https://twitter.com/user/status/1527577341488136193

 

Québec ME/CFS patients deserve access to new long-Covid clinics, advocates say.

The network of clinics will focus on long COVID and Lyme disease, but not myalgic encephalomyelitis, leaving patients with the complex illness feeling forgotten again.


https://montrealgazette.com/news/lo...ccess-to-new-long-covid-clinics-advocates-say

 

I had to laugh at that. Typical. I'm not going to bother frankly, I'm done with hoping it won't be massively disappointing, it always is. I don't have the energy to tell them every wrong thing they'll do, will leave this to LC whipper-snappers.

 

What We Know About Long Covid So Far--NYT

Not a very good article

https://www.nytimes.com/2022/05/21/...73MoH-c2TlazTLJskKo6WlEdzUpeMk&smid=url-share

 

Like we're still at day 1. Nothing learned at all that we didn't know for a long time. Hell, like we're still in the 1980's.

The only difference it that it all isn't almost universally dismissed as silly nonsense, just mostly misrepresented and with bits of BPS pseudoscience here and there (also all there is behind the scenes, but the public doesn't see that). But otherwise there has been absolutely no progress that would count above mediocre and minimal. Entire new industries will spring up and mature by the time a single step of progress can be made.

I don't get the infinite tolerance for failure. It's not normal to dig the same hole endlessly and never find any fault to the process, or the outcome. Does medicine have no self-efficacy? They have to be compelled, cajoled into putting enough effort to make a difference? Given incentives? Prizes? Riches? Wealth beyond their wildest dreams? It's like there is simply no self-motivation to do anything.

 

I'M WORRIED
My teenage son is exhausted by long Covid and I worry for his future – he looks so glum
https://www.thesun.ie/dear-deidre/8833802/teenage-son-long-covid/

 

https://www.dailymail.co.uk/health/article-10846665/Long-Covid-Dont-fall-quick-fix-cures.html

 

The above article (perhaps inadvertently) makes a good point:

It's a bit rich for the medical establishment to warn patients about trying untested, quacky quick-fix cures when they are also offering untried, untested treatments (such as physiotherapy, singing therapy, mindfulness) themselves.