Long Covid in the media and social media 2022

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ahimsa said:
Washington Post: Desperate covid long-haulers turn to costly, unproven treatments

Regular link (paywall)


Gift link (no paywall for 2 weeks)

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Months-long waits at long-covid clinics combined with the sluggish pace of research have left vulnerable patients clamoring for immediate care as manufacturers bring novel remedies to market, often with little data behind them.
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That is very unfair to slugs, which despite their slowness do not simply slime around in circles. Or they'd die, so, you know, they clearly don't do that.
 
Dianna Cowern on Twitter said:
Anyone who has/researches #longcovid, what would you want the general public to know about your experience/research? I am (slowly) working on a video abt Long Covid and want to be thorough. I think it's one of the more important videos I'll ever make"
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Dianna Cowern is a science youtuber known as The physics girl. She knows most of the other pop science youtubers, they will likely watch it if she makes this video. If anyone remember, Hank Green, of scishow, completely flubbed LC at first in a tweet thread. I think there was a later video that wasn't all awful, but still not there.
 
TD with long-Covid runs marathon in three-and-a-half hours
Politician told Dáil about his struggle with virus days after he finished race

[..]

However, despite the impact of the virus on his breathing, including a persistent cough, Mr Brady was able to complete the long-distance running event in a time which would be the envy of many of those competing.

[..]

He said he is “very conscious” there are people with worse symptoms than he has and concedes his condition is at the milder end among those impacted by the long-term illness.

“There are people with chronic fatigue who would not be able to get out of bed and I’m conscious of people I know, who would have been runners, literally can’t put one foot in front of the other and I’m at the very other end of the scale,” he said.
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https://www.independent.ie/irish-ne...athon-in-three-and-a-half-hours-42175070.html
 
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News article about a new Swedish study:

Ny undersökning: Två av tre covidsmittade inom vården fick långvariga besvär
https://sverigesradio.se/artikel/ny...idsmittade-inom-varden-fick-langvariga-besvar
Auto-translate said:
New study: two out of three covid infected people in healthcare had long-term problems

Two out of three covid infected care workers in the Västra Götaland region had long-lasting symptoms three months after a mild covid infection.

This is the result of the largest survey to date of health and social care workers who were tested during the first year of the pandemic.

Simon Larsson, one of the researchers at the Sahlgrenska Academy in Gothenburg, explains the distinctive symptoms.
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Forum thread about the study here.
 
At this point it has to be said: medical and public health authorities have made lying about Long Covid not just normal but essential. Telling the truth about medical issues should not be a radical act, and yet here we are, in a state where lying is the only acceptable thing they will do about it. This is as pervasive as how military secrets in a time of war are kept and the public lied to. Except there is no state of war, only lies.

The only questions that follow is what else is being lied about, and how much of it there is. But for sure, there has to be a huge amount for such blatant lies to become fully normalized.
HSE Ireland on Twitter said:
For some people, COVID-19 can cause symptoms that last weeks or months after the infection has gone. Recovery is different for everybody. Find out about managing symptoms of COVID-19 and long COVID at home: https://t.co/GqwLJwEUWi #COVID19 | #LongCOVID https://t.co/p7BSCLFxwc
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Speaks for itself. There is no issue any profession has been dealing with in the last half-century where there was such a wide chasm between reality and what experts are saying and doing, this here basically defeats the entire purpose of having experts at all, if they're going to just screw it all up completely. Literally two mutually exclusive realities, only one is actually lived, the other completely imaginary. All made even worse by the fact that the imaginary alternative is literally about the lived reality being imaginary.
Long Covid Kids on Twitter: said:
⁉️⁉️Two questions⁉️⁉️ 1) ✅ Which three symptoms would you EXPECT to see in a clinical definition of Long Covid in children? 2) ❌Which three symptoms would you NOT EXPECT a definition of Long Covid in children? Please reply using ✅ & ❌ #pwLC #LongCovidKids #LongCovid
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(Spoiler, and for those who don't use twitter: most of the responses are literally the ME criteria and explicitly reject the BPS version of depression/anxiety/deconditioning)
 
Not sure if good or bad, but many steps are being missed here. There is no going from decades of denial and discrimination, some of it aggressive to the point of being hostile, to a coherent system that helps patients instead. This is a heavily-documented disaster where the entire conflict was over this, and we were right all along. The issue is not mere attribution of who was right, it's that disastrous harm was committed out of that conflict.
Leonard Calabrese (neurologist with LC) said:
@IgorKoralnik makes the case that NEURO #LongCovid is now bread and butter neurologic disorder- Needs to be incorporated in training -@CleClinicLCM @CCalabreseDO @jeffsparks @ki https://t.co/jptwg2tECy"
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FiqxnLBWAAIanlc

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rvallee said:
Not sure if good or bad, but many steps are being missed here. There is no going from decades of denial and discrimination, some of it aggressive to the point of being hostile, to a coherent system that helps patients instead. This is a heavily-documented disaster where the entire conflict was over this, and we were right all along. The issue is not mere attribution of who was right, it's that disastrous harm was committed out of that conflict.
Does he actually mean that neurologists will claim the illness / disease for their own field. or that they have spotted a potential gravy train. Since they have no understanding of underlying processes will they just charge you a significant amount to give you an fnd dx.

FiqxnLBWAAIanlc
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Does he actually mean that neurologists will claim the illness / disease for their own field. or that they have spotted a potential gravy train. Since they have no understanding of underlying processes will they just charge you a significant amount to give you an fnd dx.
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Exactly what I am concerned about. Getting attention is not necessarily good if it's from people whose every incentive works to sabotage this. Neurology will have to address the pseudoscience they built at some point, but right now we are basically in the peak era of psychosomatic garbage.

And sadly in medicine, popular and wrong is popular, while right and unpopular is unpopular. Like everywhere else, because truth is a social construct and politics get in the way of everything when there isn't math to end the argument.

Because even to this day and through the entire Long Covid era, neurology is most often cited as, no better way to say this, a bunch of jerks. Consistently the worst discipline when it comes to gaslighting and disrespecting patients. Even ahead of psychiatrists.
 
Just to point out.. neurologists don’t need a gravy train. There is a massive shortage of neurologists globally incl UK and US. Not enough to deal with the existing neurological diseases like MS, Parkinson’s, dementia’s — all of which are exploding in numbers, and the last two are made worse or brought on by Covid also. They have not been trained to help post viral illness so not sure I’d hold it against them. They are really specialists in movement disorders and dementia.
 
Long COVID sufferers like Sue struggling to afford or access the treatment they need

https://www.abc.net.au/news/2022-11-29/long-covid-tasmania-access-to-treatment-difficult/101709304

Key points:
  • Modelling suggests as many as 500,000 Australians could suffer from long COVID symptoms by the end of the year
  • Tasmanian sufferer Sue La Velle says the state needs a dedicated long COVID clinic rather than a referral service
  • A researcher says funding should be tailored to provide long COVID support
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Difficult to access treatment when there isn't any. At this stage, and the foreseeable future, there is only support, and some modest management possibilities on the table.
 
Long COVID May Catalyze New Treatments for Chronic Pain and Fatigue

Approximately one in ten women, one in twenty men, and one in forty children and adolescents with COVID-19 had at least one of these three symptom clusters at three months post-infection in 2020 and 2021. People living with these conditions should receive support, treatment, and recovery plans, but the likelihood of them accessing these resources is far from certain despite the emergence of some long COVID clinics.

Unfortunately, before COVID-19 arrived, there were already tens of millions of people with chronic pain and fatigue who needed help but struggled to find it. For example, in the United States, as of 2018, only about fifteen doctors specialized in chronic fatigue syndrome, also known as myalgic encephalomyelitis. Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a painful and debilitating condition. "[With long COVID], we're adding an immense volume of patients to an already dysfunctional and overburdened system," said Beth Pollack, an MIT researcher and an expert in chronic conditions, in an interview with Ed Young for The Atlantic.
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https://www.thinkglobalhealth.org/a...alyze-new-treatments-chronic-pain-and-fatigue
 
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