Long Covid in the media and social media 2023

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One in Five Doctors With Long COVID Can No Longer Work: Survey
Claire Sibonney

August 31, 2023
https://www.medscape.com/viewarticle/996030
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I am very sorry for what has happened to these people, and I wish them all the best.

OTOH, if this is what it takes for medicine to finally wake up to the brutal reality of these conditions, and how they have been so appallingly mistreated, and often still are, then good.
 
I don't know if I will remember to make this regular, but I decided to check up on Bing chat (ChatGPT back-end but up-to-date on web content) and ask for the most significant news and research on Long Covid in the last month.

I used Bing chat because ChatGPT doesn't browse the web and only has content up to September 2021. Google Gemini should be out in a few weeks, maybe months, and is rumored to be far more powerful, and is expected to be up-to-date on web content, given that Google pretty much holds most of it on their servers.

Most of those have been covered, but it's interesting to see the public takeaway of what's happening, through the filter of an AI that will answer a lot of those questions.
Oh, actually I see that the first one is a Long Covid minimizing piece by some dude with the handle HealthNerd on twitter, who is always nitpicking about LC and clearly doesn't think much of it. I find him to be every bit as bad as the minimizers who are open and honest about their minimizing. He seems to think that evidence-based medicine can do no wrong, and find him very annoying.
 
UK’s Long Covid research under threat from regulator backlog, warn scientists

"Scientists are warning that delays at the UK’s medicines regulator mean an important trial looking for ways of treating Long Covid risks running out of money before it finishes.

Researchers hunting for treatments that could benefit the millions of Long Covid patients, who currently have no approved drugs, have waited up to six months for the Medicines and Healthcare Products Regulatory Agency to approve adaptations that it is required to rule on within 35 days.

The Stimulate-ICP study is modelled on the UK’s flagship Recovery trial that found drugs to use against acute Covid-19. It has only enrolled 900 of the 4,200 participants that it aimed to recruit, and its funding from the UK’s National Institute for Health and Care Research runs out in March. "

https://www.ft.com/content/49287f26-7aa6-4606-8c81-a2ebbe72247d
 
Andy said:
UK’s Long Covid research under threat from regulator backlog, warn scientists

"Scientists are warning that delays at the UK’s medicines regulator mean an important trial looking for ways of treating Long Covid risks running out of money before it finishes.

Researchers hunting for treatments that could benefit the millions of Long Covid patients, who currently have no approved drugs, have waited up to six months for the Medicines and Healthcare Products Regulatory Agency to approve adaptations that it is required to rule on within 35 days.

The Stimulate-ICP study is modelled on the UK’s flagship Recovery trial that found drugs to use against acute Covid-19. It has only enrolled 900 of the 4,200 participants that it aimed to recruit, and its funding from the UK’s National Institute for Health and Care Research runs out in March. "

https://www.ft.com/content/49287f26-7aa6-4606-8c81-a2ebbe72247d
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There is a simple solution to this and if they aren’t allocated additional funding there will be a political reason.
 
John Snow Project
Perspective: I Did Everything Right and Things Still Went Wrong
https://johnsnowproject.org/perspec...everything-right-and-things-still-went-wrong/

Salvatore Mattera did everything right. He was fully vaccinated and boosted and even had the ‘hybrid immunity’ some commentators said would protect him, but his second and third COVID-19 infections turned his life upside down.
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In the second in a series of personal perspectives, the John Snow Project talks to Salvatore Mattera, a young professional based in California, who developed Long COVID after his third SARS-CoV-2 infection.​

The John Snow project is named after famed UK epidemiologist John Snow, who pretty much started the concept of public health by tracing the source of a cholera outbreak in London to a water pump.

Here the article/interview talks mainly about the confusing message coming out of public health and most MDs, constantly minimizing or denying Long Covid, and how this false messaging is harmful.

“Government officials that downplay or ignore the risk of Long COVID are directly responsible for the suffering of millions of people. Even if there's nothing to be done about it, at least telling people the truth would give them a chance to make a decision about the amount of risk they're willing to take. Be honest with the public about Long COVID: stop downplaying it.”​
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Star Tribune: "Frustrating futility on long COVID"

"So far, the National Institutes of Health's progress has left patient advocates and some scientists underwhelmed. Accountability and oversight are needed."

"It didn't seem to be a house-on-fire moment, which it should have been," Osterholm said.

"So far, it doesn't appear that Congress has held a hearing to scrutinize NIH's use of long COVID funding. Accountability and oversight are needed."

"Rep. Anna Eshoo, a California Democrat, deserves praise for her prominent advocacy for this. We'd also like to see Minnesota Sens. Amy Klobuchar and Tina Smith get involved, a view shared by Billy Hanlon, a prominent patient advocate for those struggling with post-COVID conditions. He is the director of advocacy and outreach for the Minnesota ME/CFS Alliance." "An independent expert review, one authorized and funded by Congress, of the NIH's strategy would be preferable to a politically infused congressional hearing."

"Confidence that initial long COVID funding was well spent is critical for future appropriations. Those struggling with long COVID, and those who will as the virus continues to circulate, deserve the nation's help in finding relief and reclaiming their lives.
 
The Irish Times: More than 5% of Irish adults living with long Covid symptoms

From a sample size of 1,004 people, 7 per cent said that in the past four weeks they had experienced symptoms of long Covid following a period of infection, according to the Ireland Thinks poll. Of those who self-reported symptoms, 73 per cent said they had experienced the effects of the virus for 12 weeks or more.
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The poll, which was commissioned by independent TD Denis Naughten, found that tiredness was the most common symptom among those who are living with long Covid – 68 per cent of relevant respondents said that they have experienced fatigue for 12 weeks or more.
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Of those experiencing symptoms for 12 weeks or more, 76 per cent said that the effects of long Covid have reduced their abilities to conduct daily activities, with 13 per cent noting that the symptoms have affected their daily lives “a lot”.
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He noted that 66 per cent of patients currently attending the State’s only neurology clinic for long Covid have been unable to return to full-time work.
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“It is imperative that we treat the scourge of long Covid with the appropriate level of urgency, commensurate with the debilitating nature of the disease and its associated symptoms. A 5 per cent community prevalence of long Covid – as reported in these findings – could lead to a significant future burden of disease across our health system and society more broadly.”
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At the outset of the tournament, former tennis champion and ESPN sports commentator John McEnroe had to miss the event after testing positive for COVID-19. So far, this is the only official case of COVID-19 testing done on anyone at the tournament, with either a positive or negative result. USTA and event organizers have not even mentioned the word “COVID” or stated whether they have tested a single player for this or any other illness.

https://www.wsws.org/en/articles/2023/09/05/gsjw-s05.html
 
Star Tribune said:
Confidence that initial long COVID funding was well spent is critical for future appropriations
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It has unfortunately been made clear that there are no future planned appropriations. But wasting $1.15B with nothing to show for it, not even spurring more research out of it, is a major failure in itself, one that deserves to be investigated fully. Medicine is obviously reckless in how they waste funds, keeps using the "research is expensive" trope, as if their own wasteful mishandling is not a main reason for it.

And then they keep funding hundreds more pointless and redundant nonsense like the 559th trial of this nonsense or another form of "think different about your illness, or whatever". Major reforms are needed here, they cannot responsibly do this, have shown that they need a lot of oversight.
 
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rvallee said:
Op-ed by US senators Tim Kaine, who has mild Long Covid and Todd Young, as well as former senator Jim Inhofe, who retired because of Long Covid.

For those not familiar with US politics, the US senate is unique in being the far stronger chamber of the legislature, whereas typically senates/upper chambers, are mostly or entirely symbolic. There are 100 of them and they have considerably more power than typical members of national legislatures.

After the pandemic ends, long COVID still needs congressional attention
https://thehill.com/opinion/congres...ng-covid-still-needs-congressional-attention/

But for some, normality still feels a long way off. According to estimates, 1 in 20 Americans may have long COVID — the diagnosis given to individuals living with the residual effects of COVID-19. Americans diagnosed with long COVID report a wide array of symptoms, including fatigue, nerve tingling, brain fog, gastrointestinal issues and dizziness. Some have very minor, nondebilitating symptoms, while others have symptoms that are severe enough to keep them out of the workforce.
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First, long COVID continues to deserve attention from public and private sector researchers. We were pleased that Congress recently directed $1.15 billion in federal funding to the National Institutes of Health (NIH) to better understand the long-term effects of COVID-19. Private companies are testing existing and novel therapies against long COVID. Congress should, at once, prioritize funding for research to better understand long COVID while scrutinizing NIH’s work for efficiency, urgency and transparency.
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Long COVID continues to impact millions of Americans. It does not care where you live, how much money you make, or if you are a Republican or a Democrat. As Congress rightfully seeks to turn the page on the COVID-19 pandemic, it should not take its eye off the ball on long COVID.​
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Trial By Error: Call for Retraction of Cochrane Review from Science For ME; Overview of Viral Persistence in Long Covid; Senators United on Long Covid

https://virology.ws/2023/09/07/tria...-in-long-covid-senators-united-on-long-covid/
 
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