Long Covid in the media and social media 2022

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Charles B. said:
For American friends on the forum who may be less inclined to feel that the Carson/Stone axis is relevant to Long Covid care in the US, I’ve noticed that Carson and FND are becoming incredibly popular amongst the Adam Gaffney cohort. Gaffney has intimated FND represents a plausible explanation for Long Covid and he wields considerable influence. Troubling stuff. Hopefully word can spread to potential participants to steer clear. Any ideas on how this could be better achieved?
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For those in the US, David Perez at Mass Gen Hospital is a very prolific FND author, so worth keeping an eye on his, and his departments, output as well.
 
Charles B. said:
For American friends on the forum who may be less inclined to feel that the Carson/Stone axis is relevant to Long Covid care in the US, I’ve noticed that Carson and FND are becoming incredibly popular amongst the Adam Gaffney cohort. Gaffney has intimated FND represents a plausible explanation for Long Covid and he wields considerable influence. Troubling stuff. Hopefully word can spread to potential participants to steer clear. Any ideas on how this could be better achieved?
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And it’s also worth noting for example that the charity FNDHope is in fact a US charity https://fndhope.org/contact/ this is international issue, not just UK.
 
Filed under: Long Covid is definitely undercounted. All of this flies under the radar. As Jonathan Edwards said so many times, physicians don't really look at symptoms beyond what can be easily treated, they're only useful to diagnose and aren't recorded in a meaningful way.

I just saw a study of pediatric cases in Iceland. Some LC deniers were gushing over it, how it shows that there is literally nothing there. When all they're looking for is existing diagnoses. They don't really look for symptoms, because it's not how medicine works. So none of the studies using the current paradigm can be accurate, since it's common practice to not do the thing that will see this. It's as valid as asserting that "radio waves" cannot possibly exist since they were never detected, a true statement before the first radio was built. If you don't look, you don't find. If you don't have the technology to look, you can't find.

None of this is recorded anywhere unless people explicitly ask for it, and the more "official" a study is, the less likely they are to ask about any of this, since it's not in the textbook and medical research doesn't allow people to look at things outside the textbook anymore, it must conform to what's known, otherwise it's impossible.

And without being told, most people just chalk it off as something else, contrary to the popular mythology around the "worried well" "scanning" for symptoms. Turns out that building an ideology out of caricatures makes for very lousy nonsense. And here we have people literally saying "I don't identify but I definitely have symptoms", making a mockery of the whole "illness identity" nonsense. Doesn't matter, what's true doesn't matter, only consensus over what's true, right or not.
I wonder how many are like me - would not describe it as long covid & perfectly well enough to return to almost normal life q quickly but taking eg 10 weeks before back to full fitness. Which is why I'm keen not to get it lots- long term detrimental impact on my active life
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I think this may be one of the most clueless, least self-aware article I have read so far. Full of speculation alongside warning against speculation. Makes explicit causative statements while warning that correlation is not causation, while directly ascribing recovery to rehabilitation, despite admitting most recover naturally. It even warns against trying unevidenced treatments found online, which is the obvious future of "psychological rehabilitation" in the form of CBT apps.

It actually warns against unevidenced treatment even though there is no evidence whatsoever that CBT or GET, the common "treatments" have any evidence for them in Long Covid. And it attributes it in kids to... *rolls drum*... Fear! You guessed it right. See, kids, who famously follow the news, are afraid of Long Covid, which is absent from all public and media messaging on Covid.

Shows one thing: absolutely nothing useful has been learned in all this time. Not one thing. Medicine is stuck in place, going around in loops following the trail of breadcrumbs they leave behind them, each time marveling at how more breadcrumbs keep being added as they take them out of their pockets and add to them. Incredible.

Long Covid: what we know about it and how best to treat it
https://www.theguardian.com/austral...hat-we-know-about-it-and-how-best-to-treat-it
 
Another Australian media article on LC. Does include some predictable BPS/functional stuff from Prof Lloyd, but also other views, including a mention of ME/CFS.

Behind a paywall, but here are some excerpts:

They found that persistent illness, in the form of long Covid as well as conditions precipitated by Covid-19 infection, including diabetes and heart disease, was likely to account for about half of the total health burden of Covid-19. Long Covid alone represented about 10 per cent of Covid-19’s health impact. That was before Omicron.

Now, Hensher thinks, long Covid will make up an even greater proportion of the health burden of Covid-19, because deaths are going down but infection numbers are going up.
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Byrne has treated patients from age 18 to 80, men and women, in all states of health or illness before Covid-19 hit them. “There is a broad spectrum of what a long Covid patient looks like,” he says. “It can look like anyone.”
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The symptoms of long Covid will be unpleasantly familiar to anyone who has experienced post-viral fatigue or chronic fatigue syndrome/myalgic encephalomyelitis. There’s a number of important similarities between all these conditions, says Dr Natalie Eaton-Fitch, a research fellow with the National Centre for Neuroimmunology and Emerging Diseases at Griffith University. “Both ME/CFS patients and long Covid patients present with brain fog or the cognitive difficulties,” she says. “There’s the post-exertional fatigue, the respiratory symptoms – they’re also present in ME/CFS, as well as long Covid.”

ME/CFS has been around a lot longer than long Covid but researchers are still largely at the hypothesis-generating stage of explaining its underlying causes. However, given the massive impact and cost of long Covid, and the substantial global research effort to understand and treat it, the hope is that scientific explanations will be found much more quickly.
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“There’s not much to find structurally, which leads us to suspect that it’s a functional disturbance.”
Prof. Lloyd
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Despite countless blood tests, scans, and visits to neurologists, cardiologists, physiotherapists, psychologists and sleep physicians, no obvious treatment targets have yet presented themselves. The most emphatic point made by many experts is that the best treatment for long Covid is prevention – not getting Covid-19 in the first place.
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Another clarion call from the medical and scientific community is for us to not repeat the mistakes of the past when it comes to recognising and managing long Covid. “We have some terrible examples from the way that we’ve responded to prior issues like chronic fatigue syndrome, where people have not acknowledged the physical and the psychological impacts of that,” says Professor Maree Teesson, director of the Matilda Centre at the University of Sydney.

Given the massive impact long Covid has on mental health, such as brain fog, anxiety, depression and insomnia, Teesson hopes that patients with the condition won’t be subjected to the same stigma that has met patients with ME/CFS, and that they will be given all the best, evidence-based treatments available. “I’m really hopeful that we’ve got a government and we’ve got a Health minister who is already discussing long Covid and is hopefully prepared to respond.”
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Professor Andrew Baillie, convenor of the Long-COVID Australia Collaboration,... ...also says Australia needs to know exactly what it’s dealing with. “I think at the moment somehow we’ve got our head in the sand; we’re not even looking, so we don’t know how big a problem it is.”

There are currently no registers tracking long Covid cases, or any centralised data collection at the state or federal level. In contrast, Britain has implemented large-scale household surveys that are giving some sense of how widespread the condition is.

Most importantly, however, Australia needs a plan for long Covid that is as agile and responsive. “Covid is not going anywhere,” Baillie says, “and the more Covid cases we have, the more long Covid we’re going to have.”
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Opinion piece in the UK's Financial Times: Covid’s chronic effects loom increasingly large

"The chief concern is now long Covid. This condition frequently draws sceptical responses due to its oft-changing clinical definition and the difficulties in teasing it apart from other underlying health issues, but there is mounting evidence of a very real phenomenon.

...

If an uptick in self-reported brain fog still doesn’t pass muster for you, then perhaps an uptick in self-reported dropping out of the workforce might. The above trends are echoed by labour market data on both sides of the Atlantic, which show marked increases in the number of people either absent from work, cutting their hours or exiting the labour force entirely due to ill health.

In the UK, 1.8mn people were out of work and not looking for a job due to illness in the three months ending April 2022, up by 269,000 or 17 per cent since the start of the pandemic. In the US, 1.35mn people were absent from work due to illness in May 2022, up 44 per cent on the pre-pandemic average for the same month, while 2.2mn had shifted from full-time to part-time work due to illness, a 37 per cent rise. The number outside the labour force who have a disability has jumped by 800,000 since the pandemic began, accounting for one-fifth of the 4mn labour force dropouts over this period."

https://www.ft.com/content/63dcc4d1-8b53-4110-bd44-10e3d1d98585
 
A paediatrician specialising in infectious diseases named Paul A. Offit was guest at the latest This Week in Virology.

At 38.12 prof. Racaniello asks him whether or not vaccination against Covid-19 prevents Long Covid.

Dr. Offit answers with a deep sigh and asks them to define Long Covid. He says he thinks there's much to learn about this, immunologically, virologically, psychologically. The symptom that seems to rise to the top is fatigue. If that's true, then he has Long Covid. They all laugh. Then they say that fatigue is serious, but that many people are tired, right?

This was quite disappointing. I thought Long Covid was taken much more serious than this among Covid-19 experts?

 
I would count their facetious treatment of fatigue as a symptom of their lack of expertise in the area of long covid. Everyone in the panel has her or his limitations in how much they know and dependent on what their area of specialization is.

Offit is a vaccine expert. Well worth listening to. No one is perfect.
 
shak8 said:
I would count their facetious treatment of fatigue as a symptom of their lack of expertise in the area of long covid. Everyone in the panel has her or his limitations in how much they know and dependent on what their area of specialization is.
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shak8 said:
Offit is a vaccine expert. Well worth listening to. No one is perfect.
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Wish someone asked him about chronic Lyme. I'm getting an uneasy feeling that perhaps he holds LC with the same regard he does chronic Lyme - which is to say not very highly.

Hey, but that would at least make him consistent.
 
I left a comment on the TVIV website on the "leave comments" section addressing your concerns, I think.

The virologists and Paul Offit should not have been so cavalier in their ha-ha it's only fatigue comments and laughter--it hurts and it's wrong. All they need to say is: we are not clinicians dealing with long covid patients.

Offit seems to have a problem with feeling pressured by the question. Some scientists bristle when there isn't enough solid research, when the facts don't all add up. Could be some of that. Does not excuse the attitude.

Thanks for your comments.
 
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This article sums up the situation in Australia. There's very little financial support for people with post-viral illnesses and the treatment offered is just useless and harmful rehabilitation:

Long-COVID sufferers unable to access disability payments say they need more support
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Australia has officially recorded more than 8 million COVID-19 infections — so even if just 5 per cent of those become long COVID, that could still be hundreds of thousands of cases.

Similarly, it is unknown exactly how many people have severe, lasting long COVID, which has been likened to another mysterious, multi-system condition, myalgic encephalomyelitis/chronic fatigue syndrome.

But what is known, is that those with severe forms of long COVID struggle to perform basic daily activities.
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While Australians with disability or chronic illnesses who cannot work can apply for support via the National Disability Insurance Scheme (NDIS) or Disability Support Pension (DSP), those with long COVID, like many others with invisible disabilities, struggle to prove they fit the detailed criteria.

NDIS participants need to prove they have a disability caused by an impairment, that the impairment is likely to be permanent, and that the impairment reduces their functional capacity to perform everyday tasks, and work, study or take part in social life.

When it comes to the DSP, an applicant's condition needs to be diagnosed, treated and stabilised.

Mr Cuming, like others who have contacted the ABC, has not been able to prove he fits either criteria.
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Mr Cuming has been attending a public long COVID recovery unit in Melbourne for the past few months but has seen "no real difference" yet.

Soon after joining, he was prescribed light, seated exercise, which he said made his condition worse.
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"Heads up to researchers: a Request for Proposals (RFP) for research on #LongCovid and associated conditions will be released later this month!"

"Patient-Led Research Collaborative (@patientled) will be posting the RFP in late July, with a due date of mid-Sept. ~$5 million in grants will be awarded, funded by Balvi. Biomedical research is eligible (including diagnostics, clinical trials, studies on pathophysiology)."

"The RFP will be posted at patientresearchcovid19.com/projects/patie… the week of July 25th and we will announce on Twitter as well."

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Thousands seeking unproven long Covid blood treatments abroad

"Apheresis, a blood filtering treatment normally used for lipid disorders, involves needles being put into each arm and the blood passing over a filter, separating red blood cells from the plasma. The plasma is then recombined with red blood cells and returned to the body via a different vein.

Gitte Boumeester, a trainee psychiatrist in Almelo, the Netherlands, tried it after developing severe long Covid symptoms.

After undergoing treatment at The Long Covid Center in Cyprus at a cost of more than €50,000 (£42,376), she returned home with no improvement to her symptoms. She received six rounds of apheresis, as well as nine rounds of hyperbaric oxygen therapy and an intravenous vitamin drip at the Poseidonia clinic next door to the clinic."

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"Chris Witham, a 45-year-old long Covid patient from Bournemouth, England, spent about £7,000 on apheresis treatment (including travel and accommodation costs) in Kempten, Germany, last year. “I’d have sold my house and given it away to get better, without a second thought,” he said. The treatment did not improve his long Covid symptoms, the BMJ reported."

https://www.theguardian.com/society...g-unproven-long-covid-blood-treatments-abroad


The BMJ article, 'Long covid patients travel abroad for expensive and experimental “blood washing”'

"Patients with long covid are travelling to private clinics in Cyprus, Germany, and Switzerland for blood filtering apheresis and anticoagulation drugs. Experts question whether these invasive treatments should be offered without sufficient evidence. Madlen Davies reports

Gitte Boumeester, a trainee psychiatrist in Almelo, the Netherlands, was infected with SARS-CoV-2 in November 2020. She was tired for weeks afterwards but chalked it up to the virus. Soon, she was experiencing such extreme fatigue that it took her two hours to walk to the kitchen to make breakfast. She had brain fog and heart palpitations, was short of breath, often felt sick, and woke up in the night with chest pain. A battery of tests found nothing wrong with her heart or lungs, and she was sent back to her GP. She left her job in November 2021, after two failed attempts to go back to work.

She joined a Facebook group for patients with long covid, many of whom discussed travel to Germany for apheresis, what some of them call a “blood washing” treatment. Apheresis, in which large needles are inserted into the veins and the blood is filtered, removing lipids and inflammatory proteins, is recommended by the German Society of Nephrology as a standard last resort in the country for lipid disorders. A new clinic offering apheresis for long covid patients, called the Long Covid Center, was opening in Cyprus, and she could be treated there in March. “I thought, what’s the worst thing I’ve got to lose?” she said. “Money was the only thing. I thought, OK, well, why not give it a try?”

Two months later she was back home in the Netherlands, having spent nearly all her savings—more than €50 000 (£42 400; $60 000)—with no improvement in her symptoms."

https://www.bmj.com/content/378/bmj.o1671
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This post has been copled to the apheresis discussion thread here
Please go to that thread to discuss it to keep discussion in one place.
 
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Long Covid: MPs demand ‘urgent’ meeting with government over private clinics ‘exploiting’ patients

Exclusive: Members of the All-Party Parliamentary Group on Coronavirus have written to health secretary Steve Barclay following an investigation by The Independent into unproven therapies being touted to patients

A cross-party group of MPs and peers have written to the health secretary requesting an “urgent” meeting to discuss “unregulated” and “untested” treatments that are being offered to long Covid patients in the UK.

It comes after The Independent uncovered a wide range of unproven and “dangerous” therapies being touted to patients, few of which have been approved for use in the NHS – or rigorously tested – for alleviating persistent coronavirus symptoms.

Patients with long Covid are also travelling abroad to clinics in Europe to receive treatments such as “blood washing”, often at a cost of tens of thousands of pounds, according to a report by The BMJ.

In a letter to health secretary Steve Barclay, the All-Party Parliamentary Group on Coronavirus expressed concern that patients “desperately” awaiting treatment through the NHS are being exploited by private clinics, and urged the government to launch an investigation into the provision of unproven care.

The group wrote: “It has come to the attention of the APPG that a number of unregulated long Covid clinics are operating in the UK, offering untested and unscientific treatments to people living with long Covid.
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https://www.independent.co.uk/news/health/long-covid-treatment-patients-uk-therapy-b2122307.html
 
Literally all the treatments officially used for LC are untested, and in the case of CBT and GET, have no basis for any of the claims they make. So all the clinics are pushing unevidenced treatments, including treatments known to harm. Literally all of them. Doesn't bother anyone. In fact they are praised as if they basically solved it.

Anyway, this plot is thickening faster than gravy after adding a cup of flour:

The reporter who wrote the story is buddy with Paul Garner and previously promoted Garner's story. The depth of corruption in healthcare is seriously astounding, this is not a properly regulated profession at all.



This has the SMC's fingerprints all over it. And the only suspicion for this is that they've been doing things like this for decades.
 
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