Long Covid in the media and social media 2022

Excellent report on Long Covid, frankly one of the better ones so far. Which is saying very little. But it pretty much has zero red flags, though only limited reporting on the link with ME/CFS, it's pretty clear about it and generally presents the impacts very well. This studio tends to produce good reports like this, it's good to see the quality extends to this controversial topic. I've seen so many sources producing similar videos faceplant on difficult topics that made me question whether the rest was any good when I don't know the topic as well.

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

 

Wow, that's solid reporting. The way they portray pwLC is the same as how people with other severe illnesses are portrayed. The first scene, for example, features someone talking their morning pills. There are few small negatives I notice. One blemish is that they try to compare the prevalence of long Covid (how many have it at one time) to the incidence of cancer (how many people get it in a year). Their discussion of private disability vs SSDI is slightly murky--many jobs have no LTD and it's generally advantageous to apply for both LTD and SSDI if you're unable to work at all. But many positives. Dr. Gutierrez portrays PEM effectively. Doctors express frustration about both bureaucracy and lack of treatments.

 

Much better reporting than usual and I'm particularly grateful Jennifer Ramey said this about sound sensitivity.

 

https://twitter.com/user/status/1590873491271974912

 

Repeat COVID is riskier than first infection, study finds

Nov 10 (Reuters) - The risk of death, hospitalization and serious health issues from COVID-19 jumps significantly with reinfection compared with a first bout with the virus, regardless of vaccination status, a study published on Thursday suggests.

"Reinfection with COVID-19 increases the risk of both acute outcomes and long COVID," said Dr. Ziyad Al-Aly of Washington University School of Medicine in St. Louis. "This was evident in unvaccinated, vaccinated and boosted people."

The findings were drawn from U.S. Department of Veterans Affairs (VA) data collected from March 1, 2020 through April 6, 2022 on 443,588 patients with one SARS-CoV-2 infection, 40,947 with two or more infections, and 5.3 million noninfected individuals. Most of the study subjects were male.

Reinfected patients had a more than doubled risk of death and a more than tripled risk of hospitalization compared with those who were infected with COVID just once. They also had elevated risks for problems with lungs, heart, blood, kidneys, diabetes, mental health, bones and muscles, and neurological disorders, according to a report published in Nature Medicine.

"Even if one had prior infection and was vaccinated - meaning they had double immunity from prior infection plus vaccines - they are still susceptible to adverse outcomes upon reinfection," Al-Aly, the study leader, said.

People in the study with repeat infections were more than three times more likely to develop lung problems, three times more likely to suffer heart conditions and 60% more likely to experience neurological disorders than patients who had been infected only once. The higher risks were most pronounced in the first month after reinfection but were still evident six months later, researchers found.

Experts not involved with the study said the VA population does not reflect the general population.

https://www.reuters.com/business/he...-than-first-infection-study-finds-2022-11-10/

 

I wonder what happened to the group of UK doctors who wrote a letter to a medical journal saying they were suffering from long term effects following their covid infection. Where are they now? How many of them recovered?

 

Haven't read it.

https://twitter.com/user/status/1591070216410349570

 

Understanding of long COVID shifting at ‘breakneck speed’

PHILADELPHIA — The understanding of long COVID, its symptoms and even its definition, continues to rapidly change amid a flood of data, according to Leonard H. Calabrese, DO, and Alfred Kim, MD, PhD, at ACR Convergence 2022.

“The story within the story of COVID-19 is trying to get our head around this concept of long COVID,” Calabrese, professor of medicine at the Cleveland Clinic Lerner College of Medicine of Case Western Reserve University, RJ Fasenmyer chair of clinical immunology at the Cleveland Clinic, and chief medical editor of Healio Rheumatology, said in his presentation. “This is not a 10-minute discussion.”

Kim, assistant professor in the division of medicine at the School of Medicine at Washington University in St. Louis, meanwhile noted the “rapidly evolving” field of COVID-19 research.

“It is moving at a breakneck speed,” he said.

The two experts cohosted a virtual community hub on long COVID at the ACR meeting.

According to Calabrese and Kim, the body of research into COVID-19 is keeping pace with the virus, which means that a flood of studies in long COVID is also beginning to emerge.

“We are starting to learn how to identify it a little bit better,” Kim said.

Early epidemiology suggests that between one-third and 40% of patients with COVID-19 experience “some lingering subjective symptoms” at 3 months or longer after acute infection, according to Calabrese. However, he added that, as time stretches on, it is possible that some patients may continue to experience long COVID symptoms for up to 18 months after acute infection.

Another challenge is that the definition of long COVID itself remains elusive. There are at least 50 — and maybe more than 200 — that have been attributed to long COVID, according to Calabrese.

“It is a lot of symptomatology to weave ourselves through,” he said.

One consideration is that it is important to differentiate between types of long COVID, Calabrese added. On one hand, there are clearly defined sequelae such as myocarditis, hypercoagulability, pulmonary scarring and stroke. For these conditions, the mechanism is understood.

On the other hand, there are also “medically unexplained” symptoms, Calabrese said.

“That is dominated by chronic fatiguability,” he said, adding that cognitive complaints and dysautonomia also fall into this category.

Poor sleep and “post-exertional malaise” that can put a patient into “crash-and-burn mode” for extended periods have also been reported, according to Calabrese, along with poor executive function, compromised vision and issues multi-tasking.

https://www.healio.com/news/rheumat...ing-of-long-covid-shifting-at-breakneck-speed

 

Oh, FFS. Groundhog Day. Again.

This medicine reduced to a closed loop, never really moving forward, just thinking it does as it feels its way around its circular path....Patients want to scream at the screen and clue in the stars as to what's happening.

 

https://twitter.com/user/status/1591574573245681664


I sure hope we'll see some of that "effort" one day. Because I'm not seeing it at all. Maybe it's happening in secret behind closed doors with nothing to show for it, but I highly doubt that. Put up or shut up because pretending that there's an effort is even more insulting with the complete lack of urgency, hell even basic scientific curiosity.

Seems like we genuinely have a very different definition and understanding of effort. Because I'd place the daily effort of every single pwME simply living with life, especially through all the disrespect and ostracization, as far more courageous and notable than everything I've seen so far from the medical profession.

 

https://twitter.com/user/status/1591816963512500226


https://www.healio.com/news/rheumatology/20221110/long-covid-and-me-a-true-story

Although I am better in many ways, I am not back to normal yet consider myself extremely fortunate in comparison to the many patients I see with neurocognitive complaints, from conditions ranging from fibromyalgia, lupus, myalgic encephalomyelitis/chronic fatigue syndrome and of course long COVID. In the absence of any approved therapies, I have found that what has helped me the most have been the interactions with individuals who have demonstrated warmth and understanding.

His study here

Not surprisingly, the optimal treatment of long COVID is unclear for now, but multispecialty long COVID clinics are growing in number, primarily at large tertiary care centres throughout the world. These long COVID clinics mostly offer extensive diagnostics to rule out other conditions, which can and do occur. Rehabilitation to improve physical function is also standard in these clinics, but the type of rehabilitation (eg, graded exercise vs pacing, with a more individualised approach advocated for patients with myalgic encephalomyelitis) is not universally agreed on.

 

This is false. Many of those clinics don't have physicians on staff and only do light testing at best. Some do this but they are very rare. All most do is BS rehabilitation that has no evidence and is harmful to many, which clearly shows that evidence is essentially irrelevant, it's all feels.

And pacing isn't rehabilitation FFS.

Most potted plants make more progress in a year than this.

 

Good thread

https://twitter.com/user/status/1592444197499551753

 

If I had the energy, I would work on a campaign of ridicule against this pseudoscience, simply taking their arguments and changing one thing.

Because you could swap in Garner's story any of the bizarre stuff he says with urine therapy and it makes zero difference, all the quackery and logical fallacies are the exact same. Or vibrational metronome energy. Or literally any fully generic quackery.

Ridicule works best against ridicule, especially when you can use their own words. They say the exact same things about studies whose conclusions they disagree with, even if they are essentially identical as their own. They constantly criticize the mediocrity of their own work, just make exemptions for their beliefs. Which is the essence of pseudoscience. No one believes in all the pseudosciences, belief is always selective. Sometimes it's nothing but cultural peer pressure.

If only we were organized at all. Just even the tiniest bit. The only reason they can successfully bully us is because the power imbalance is even more pronounced than stealing candies from babies, whose parents would strongly, and possibly physically, object and no one would mind much.

 

75% of Long COVID Sufferers Forced to Stop, Change or Reduce Their Work

Three in four (78%) long COVID sufferers have had to stop, pause, reduce or change their work since experiencing symptoms

• 
  
  • 98% say long COVID has negatively impacted their ability to work
  • 61% feel they are “dragging themselves to work as they have no choice” and 16% “fearful of losing their job”
  • Employers ‘lack understanding’ and should show empathy, finds survey by leading hiring platform Indeed

Three in four (78%) long COVID sufferers have had to stop, pause, reduce or change their work since experiencing symptoms, according to a new report by the leading hiring platform Indeed.

With approximately 2.1 million people (3.5% of the population) currently living with long COVID in the UK and workforce inactivity due to long-term sickness at an all-time high, Indeed’s study reveals long COVID’s significant impact on the workforce.

It found that nearly a quarter (24%) have reduced their working hours, 19% do less overtime, and one in four (24%) stopped working for a significant amount of time; a hard pill to swallow as the cost of living squeeze bites.

Almost no workers are immune to the impact of long COVID
The findings indicate that nearly all long COVID sufferers’ (98%) ability to work has been negatively impacted by the disease.

And since diagnosis, 23% of workers have stopped full-time work, 12% have moved to part-time work and 19% stopped working altogether.

The research also identified how long COVID is physically and mentally affecting this population: three in five (59%) feel more tired, 42% say it’s reduced their physical strength, 37% say it’s diminished their concentration and one in five (19%) say they’re in physical pain when working. With regards to the psychological and emotional impact, 31% cite anxiety as an impact, meanwhile one in five (21%) feel it’s reduced their confidence at work.

https://www.onrec.com/news/news-arc...rs-forced-to-stop-change-or-reduce-their-work

 

A summary of all the questionnaires being run and which treatments are reported as working best

https://twitter.com/user/status/1592852928267956225

 

Well written empathetic article about Longcovid in children in a German left-liberal newspaper. Unfortunately an experimental therapy is too much presented as the cause of a significant improvement which could also be natural remission.
https://taz.de/Long-Covid-bei-Kindern/!5891848/