Long Covid in the media and social media 2022

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Trish said:
Isn't it likely that the tiny subgroup of doctors with the time and inclination to sound off opinions on Reddit are a particularly arrogant and opinionated group not representative of all doctors?
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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.
Australian physicians & health leaders are taught repeatedly that #MECFS is “mysterious” “we don’t know much about it” “don’t understand it.” ➡️ This learned helplessness has led them to neglect & abuse thousands of Australians. Now, #LongCovid patients are impacted too.
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"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".
 
Good morning to everyone except @landg_group, who’ve abruptly cut off my long covid support, giving me a week to return to full time work Apparently if I’m working part time there’s “no medical reason” I can’t work full time as well
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It all takes me back to my first GP appointment, back in April 2021, where I was prescribed “graded exercise”. Only later did I learn that this approach was widely discredited. Specialists believe that pushing yourself is unhelpful. Instead you should work within your limits
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https://www.abc.net.au/news/2022-10...olved-mandatory-isolation-australia/101539126
...experts like Dr Anthony Byrne — a senior respiratory physician who is co-leader of the Long COVID Clinic at Sydney's St Vincent's Hospital — are trying to crack the code to treating one of the world's most mysterious new diseases.
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"One of the things that's really important for a physician is to be confident about the way you're managing a condition. But that's a problem for a new condition that people don't have experience in."
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Not off to a great start. No mention of ME/CFS.
A recent study by Harvard University found that stress is also a major risk factor.

"So, in other words, if you're just unlucky enough to get COVID at a time when you're stressed, stuff is going on, and you're anxious, then that is a risk factor for going on to develop long COVID," Dr Byrne says.

"One of the things we are seeing is a lot of high-achievers: people who are doing 100 things — and then they get COVID, and they completely decompensate. They can't do stuff. It's made worse by the expectation that they should be able to run a marathon and can't."
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You can see where this is going...
"We can say that most people do have some improvement, particularly if they're well supported by their general practitioners. Physiotherapists are very important. Psychologists are very important.

"So, if patients can access those kinds of supports, they will certainly see improvement in their wellbeing."
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Yep, no surprises there.
"It isn't something we can ignore."
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Sure it is. You just completely ignored the pre-Covid history of such things.
 
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
Whitney Dafoe of Palo Alto hasn’t spoken in nine years. He hasn’t eaten a bite of food or sipped water in nearly as long. But at 39, Dafoe writes eloquently about the debilitating and largely ignored illness he shares with millions.

“I like to compare the state I’m in now to staying up for two nights in a row while fasting, then getting drunk,” he wrote on the blog he uses to tell the world about living with his nearly unpronounceable disease: myalgic encephalomyelitis/chronic fatigue syndrome, or ME/CFS, for short. “Fatigue is much too mild a word.”

Dafoe was a globe-hopping photographer in 2004 when, at 21, he developed a persistent lightheadedness after exercise. In India five years later, he caught a “strange cold,” then battled pneumonia in Calcutta. Dafoe was diagnosed in 2012 with ME/CFS — and considers each prior illness a likely suspect in causing it.

The nonprofit National Academy of Medicine estimates that 836,000 to 2.5 million people in the U.S. alone have the disease — most of them undiagnosed.
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https://www.sfchronicle.com/health/article/chronic-fatigue-COVID-disease-17512173.php
 
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
 
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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.
 
Shadrach Loom said:
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.
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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.
 
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