Long Covid in the media and social media 2022

What I have observed on social media is that respected doctors give facts and do not give negative opinions or comments towards patients.

 

Never thought of it this way but of course, after all everything said about us is projection: this is actual learned helplessness.

https://twitter.com/user/status/1581207693674414080


"Why record this, there's nothing we can do about it?"
"There's no point researching this, we're not going to find anything"
"Medicine will never find a treatment for this"
"This is all a mystery, the only thing we can do is [describes nothing]"

This IS learned helplessness. Frankly to the point of neuroticism. Actual peak "there's no point trying anything since we're going to fail anyway".

 

https://twitter.com/user/status/1581196238224912385

 

If you ask most people how busy their life is, most will say that are "high-achievers: people who are doing 100 things". Because normal life is plenty busy enough for the most part, despite what the cult of recreational exercise might say. That's even the main trope behind blaming all chronic illness on stress and the "frenetic pace of urban life", with the bar being set at urban life in the 19th century, which is about suburban average for most people given how limited transportation was back then.

Most pwLC insist on this because of the constant accusations, including directly from the people who work in LC clinics, of being either lazy, or not trying hard enough, of having become decondition as a result of being bedbound too long (which is never asked, never even checked) or the usual "LC only happens to sedentary people who eat like crap". This in direct response to those accusations, people are emphasizing it not because it's significant but because they are constantly and in/directly accused of the opposite.

This is as if they had a policy of slapping people in the face at the beginning of a consult, then "noticing" that most of their patients frequently touch the spot where they were slapped and give a really mean stink eye (and also complain a lot about it, somehow). They are influencing the very thing they are then writing about having seen, like an awful researcher who puts their finger on the scale because the scale isn't giving them the results they want.

By the most minimal standards of professionalism this is absurdly incompetent. And they can't see any of it. The idea that you can train professionals wrong and expect them to do fine is completely ridiculous. There is no amount of being trained wrong that counts as being trained, that millions of professionals are still oblivious after several years to what complete amateurs can figure out quickly based simply on lived experience is a truly unique form of failure, this simply never happens in expert professions, not without politics and ideology anyway and that never stems from the experts themselves.

 

A long-hidden disease is pulled from the shadows by its cousin, long COVID

https://www.sfchronicle.com/health/article/chronic-fatigue-COVID-disease-17512173.php

 

This appeared yesterday on Twitter, a preprint on the impact of vaccination and repeated infections of Covid and how that relates to symptoms-

https://www.researchsquare.com/article/rs-1749502/v1

 

I started a thread about it here: Outcomes of SARS-CoV-2 Reinfection (Preprint)

 

https://www.cnn.com/2022/10/17/opinions/long-covid-health-care-smith/index.html

https://twitter.com/user/status/1582027993295122432

 

Merged thread
Vaun Earl Norman is currently ensconced in his bedroom alongside Hendrix, a Staffordshire bull terrier he looks after occasionally for a friend. “He normally walks for miles and miles a day, so he loves it when he’s with me – it’s like a holiday for him,” Norman says. The actor from north Yorkshire is speaking to me on the phone from his bed, where he spends most of his time. The 56-year-old once worked on oil rigs, but today he has to plan for seemingly undemanding tasks, like walking to the supermarket. Most days even that is not possible.

Norman has Myalgic Encephalomyelitis (ME) – also known as Chronic Fatigue Syndrome (CFS) – arthritis and fibromyalgia, conditions he developed after receiving lifesaving treatment for kidney cancer in 2006. Now, he lives with daily chronic pain and a “deep fatigue” that he explains has nothing in common with what you might imagine to be tiredness. ”I’m not a lazy man. I do try,” he tells me apologetically, after explaining that a carer handles his washing and cleaning. “These conditions have destroyed any quality of life I had previously,” he says.

The reason why he developed these debilitating post-treatment symptoms remains a mystery. Admittedly, his cancer treatment was, in his words, “heavy handed”, hospitalising him frequently and causing him to spend weeks of the year in lead-lined rooms due to the high levels of radiation his body was emitting after targeted radiation treatment. But why him? Why these diseases? Why these symptoms?

https://inews.co.uk/inews-lifestyle/me-chronic-fatigue-long-covid-research-treatments-1911812

 

They refer to ME as chronic fatigue once or twice but it's otherwise a pretty solid article.

 

Merged thread
Paywalled—if someone has access please post

https://twitter.com/user/status/1582389075205496833

 

Unpaywalled here:

https://archive.ph/KOsJe

 

As hacks do, this one googled to a panacea (as well as important ME facts, like the unrefreshing sleep and permanent exhaustion that characterises the illness) - here’s the cure, SF Chronicle readers:


In August, for instance, a privately funded Massachusetts biotech company, Axcella, reported encouraging results from a Phase 2 clinical trial of 41 COVID-19 survivors battling chronic fatigue. The company said 21 people who took AXA1125, a combination of six amino acids, significantly improved their scores on physical and mental fatigue evaluations after four weeks, compared with 20 people on a placebo who did not.

 

Its 6 BCAAs (https://axcellatx.com/pipeline/axa1125/), specifically Leu, Ile, Val,Arg, Gln and Nac. You can get 5 of these in any normal BCAA tub on Amazon and NAC isn't hard to get hold of. I still take BCAAs I get a boost from it somewhat but its nothing dramatic. I can't see this in practice doing much more than that.

 

Post-cancer (or cancer treatment) chronic illness seems relatively common. It's such a loss that we don't have any numbers on this, it could lead to significant clues. Literally no way tell how common it is, there is a complete void of data on this. As a choice. What a waste.

 

The author does not seem to understand the difference between syndrome and disease.

 

I don't think there can be so many of us with ME and LC who have never met in the past or present that can articulate the same thing without relevance.