Long Covid in the media and social media 2022

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Not sure if twitter going down the drain, people giving up or end-of-year normal, but twitter chatter has pretty much fallen down to pre-COVID level. Ghost town in terms of advocacy for chronic illness, like LC never even happened. Meanwhile the LC subreddit is busier than ever, but it's at the same stage as in 2020: everyone confused, no help from healthcare, everyone wondering what the hell is even happening, etc.

We're really seeing the same dynamic that played out. After a while, people just give up, especially seeing complete apathy from friends and family. It's easy to see how it happened with us, the default is set to fail.

And the NIH program seems resolute at failing so they can gloat about how they "tried" and it's simply impossible. Hard to point out how it would be any different. Like a war won without firing a single shot because no one came to defend.

Basically only a handful are still vocal. Maybe it's worth a shot.
In recent weeks @NIH has made it clear the #LongCovid RECOVER initiative has very limited clinical trial funds — & with those funds are prioritizing useless & harmful therapies like CBT & exercise. We need to speak up — here's a letter to email NIH
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And, yeah, somewhere down there is a slide where CBT is featured as a possible treatment and apparently the NIH has never figured out how to do clinical trials for less than $60M, or whatever. There's a quote from Koroshetz, not sure if it's in that thread, where he says this way of working with patients is unprecedented and new to them. Even though they're mostly ignoring the patients and AIDS set the model for how effective this approach is. Seems like they learned nothing at all from AIDS, other than if you crush a patient movement effectively, you can ignore it forever.
 
We are sick & tired of reading articles like this detailing a promising therapy that could improve our lives, then being told "we can't rush science", then finding out we're throwing millions at therapies that have done nothing for us. This is agonizing.
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The most salient point in his thread. We went from discovering SARS-CoV-2 to developing a vaccine for it in under a year, and we can pull off analogous feats for LC if the money and political will are there. We can rush science. It follows the same good, fast, cheap (pick any two) rule as anything else. We chose good and fast for Covid, and we can do the same for post-Covid.
 
General observation: in UK popular media the narrative 'Lock-downs were bad, and unnecessary', 'self-isolating with Covid-19 is not necessary/if you feel well enough still go to work' seems to be the norm.
LC, being consigned to something else to be 'dealt with' by mental health 'services'.

eta: ironically just hearing on the radio that due to the unprecedented rise in flu cases, the NHS are asking people to stay at home and not mix with other people!
 
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Sly Saint said:
General observation: in UK popular media the narrative 'Lock-downs were bad, and unnecessary', 'self-isolating with Covid-19 is not necessary/if you feel well enough still go to work' seems to be the norm.
LC, being consigned to something else to be 'dealt with' by mental health 'services'.

eta: ironically just hearing on the radio that due to the unprecedented rise in flu cases, the NHS are asking people to stay at home and not mix with other people!
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I've actually seen this in a newspaper headline with the combination of blaming infection measures as the reason for the increase while advising masks as a way to help. Similar thinking to blaming limited and long-over lockdowns on the increase in spread, then telling people to do just that, which by the same logic should actually increase the spread later on.

No wonder people are confused. The messaging is completely contradictory and has been from the start. It's almost built as a strategy to destroy trust in experts and institutions, but it's so obviously inept that it can't be anything but pure incompetence.
 
Kind of disturbing exchange with a MD who is supposedly involved in the NIH program. I held my tongue a bit but this is exactly the kind of people who ruined everything for us. And it's looking more and more like medical professionals are simply trained to lock up and reject any and all criticism from patients, as a challenge to their "authority". This is not normal, it's excessively sensitive and childish.

This is basically the most generic and least offensive level of criticism that can be laid at what looks like a giant failure, repeating all the same mistakes. And this MD reacts almost like an old aristocrat who had to endure the humiliation of being addressed, directly, by a filthy peasant. It's so out of proportion, there was no actual criticism and yet out of this comes "I am the main character" syndrome making it all about them.

I see absolutely nothing wrong with what happened here, other than the physicians involved. And this is just the same dynamic as always: the complete power imbalance and massively failing the waiter test of having to even pretend to respect our input, while making it all about theirs.
charlos on twitter said:
Yes, but it does not mean they're being listened too. That I know with 100% certainty. Do you know what the dynamic is like with one patient providing "feedback" to a room full of doctors pushing these therapies?
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Problem physician said:
You're clearly very mad and not really wanting civil discourse and I get that 100%.
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charlos on Twitter said:
@calirunnerdoc @lilspartansamu1 @ShaneyWright @NIH @Dakota_150 She did not engage with me at all, are you saying “I blasted her” by pointing out that patient review is not a black & white ordeal? She blocked me right after clarifying my position — Not OK at all under any circumstances. I’m shocked you’re attempting to defend this.
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(The MD in question isn't doctor Alice, she's higher up above)

This is exactly the kind of people who shouldn't be involved in anything having to do with us. The simple reality is that as a result of having been trained wrong, the vast majority of MDs won't be able to help, as the only thing they will bring is the same old failure. That means that most who want to be involved need to be excluded. This can't happen without bruising egos but the alternative is failure and we can't tolerate that, not with the only chance at this in generations.

Because even beyond the context and what it says when the focus is taken away from us and onto their priorities, this is completely unprofessional behavior, no matter the profession. I've never worked with people who behave that childishly, and it's terrifying how common this diva BS is in medicine.
 
Get the sick back to work to end Britain’s labour crisis, Rishi Sunak told
The Government is looking at a major expansion of its “midlife MOT” scheme to combat the rising trend in over-50s quitting the labour force.

However, Sir Steve Webb, who served as pensions minister in the coalition government between 2010 and 2015, said that Number 10 should “try and solve the right problem”.

Now a partner at Lane Clark & Peacock, a finance consultancy, Sir Steve told The Telegraph that stopping the short-term sick from becoming the long-term sick is the “single biggest thing” ministers could do to boost the workforce.

“In other words, if I go off sick because of, whatever, long Covid or just waiting for NHS treatment, the longer it goes on the more I get stuck,” he said.

“It is kind of obvious, but it is true. If I get back to work within three months, six months or whatever, fantastic. If I am off for 18 months on sickness benefit waiting for NHS treatment or something like that, who wants to employ me after that?

“Trying to get to that group who are short-term sick and stopping them becoming long-term sick is the single biggest thing you could do, in my view.”
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Get the sick back to work to end Britain’s labour crisis, Rishi Sunak told (msn.com)
 
Kitty said:
But there's also ...



https://www.theguardian.com/society...ts-unproven-expensive-treatments-experts-warn
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Wasn't that article published months ago? The date is recent, but it's not as if anything changed since then. It's actually weird here how the framing is about private treatments when this is the "official" standard of treatment, which, yeah, is a scam:
Claire Higham of the charity Long Covid Support and who suffers from it herself, is concerned that some have turned to pricey “brain retraining” therapies, which it is claimed can help by rewiring the neural connections in the brain using psychological techniques.

“Name anything that medicine doesn’t treat very well and these companies do come in quite quickly,” she said. “Long Covid came along, and gave a fresh impetus and a breath of fresh air for these controversial treatments.”

Trevor Robbins, a professor of cognitive neuroscience at the University of Cambridge, said that while it is possible brain retraining may help those with long Covid, he is not convinced it would offer a cure, adding it may help some but not others. “If it did work, I’m not convinced it would work any better than standard CBT [cognitive behavioural therapy] plus mindfulness batteries,” he said.
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This is literally not just the current treatment model, this describes the actual "theory" behind it, more or less. And that's just the thing: CBT doesn't "work" in any real sense here. What officially came out of medicine is an even worse scam than most of what's out there.

Oh, man, the hits just keep on coming:
“You have an illness that is not clearly defined, that is under-researched, that could be several illnesses, that could be existing ones or a new one, we’re not actually sure … That means that anyone speaking with confidence about a treatment or about a cure should be treated with a large pinch of salt,” he said.
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Again, could not better describe the biopsychosocial scam any better. It was always based around speaking with confidence about complete BS, the textbook definition of a con.

But the same failure mode is still in operation:
Higham added that while the long Covid community is well connected and adept at joining forces to scrutinise possible treatments, she said the best way to protect patients was to offer support.

“There has to be a huge effort to fill the black hole in medicine that created this therapeutic gap in the first place. We need fast-track research back in place and a Recovery-like trial, which can test therapeutics for long Covid quickly,” she said.
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1) the lack of treatments, or anything really, is 100% medicine's fault, 2) it's not possible to fast-track research using a pragmatic approach, this way of doing things takes years and is entirely useless here, and also 3) this is a research problem and research is almost never mentioned, it's always magical rehabilitation.

And the truth remains buried, still presented as an entirely new thing. The "therapeutic gap" is decades-old but it's forbidden to tell the truth. Nothing but lies to perpetuate a fraud, guaranteeing failure.
 
Fortune: COVID isn’t just infecting you—it could be reactivating viruses that have been dormant in your body for years

When you stand up, you feel dizzy, and your heart races. Even routine tasks leave you feeling spent. And what was once a good night’s sleep no longer feels refreshing.

Long COVID, right? It may not be so simple.
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Thus, “long COVID” in some may not be an entirely new entity, but another post-viral illness—like ones seen in some patients after Ebola, the original SARS of 2003-2004, and other infections—that overlaps with Chronic Fatigue Syndrome.
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Why those of us with long Covid finally have reason to feel hopeful
Joanna Herman

Indifference among politicians is still rampant, but thanks to new research and technology 2023 could be much brighter

It is two years since I first wrote about long Covid, prompted by my utter dismay and frustration at the lack of help people like me were getting.

A lot has changed since then, with more clinics, more funding for research and major trials under way. But the statistics remain stark: the latest ONS data suggests 2.2 million people in the UK are living with long Covid (3.4% of the UK population), and nearly 600,000 of them (27%), like me, have had it for more than two years. Most of us have seen a significant impact on our day-to-day activities, and 17% struggle with basic daily tasks such as cooking and hanging up the washing.

A significant number remain unable to work. In July, the Institute for Fiscal Studies estimated that 110,000 people were absent from work at any time and one in 10 stopped work while they had the condition. Recent data from NHS trusts in England suggests that a million working days were lost to long Covid last year.


I got Covid in March 2020. Mine was a mild case – I was not admitted to hospital, and had no risk factors for severe disease. Yet 33 months on I am still unable to return to work in the NHS as an infectious diseases consultant. It seems ironic that at a time when the NHS is in crisis, so many of its workforce have been off sick with long Covid and have been disproportionately represented since ONS data was first collected. And we will only add to the demands on our already collapsing health service.

Appropriate care remains subject to a postcode lottery. While some attend well coordinated, multidisciplinary clinics, others have physiotherapist community-based ones, or nothing at all. My local London teaching hospital still has no clinic, but eventually GPs set up a community clinic, which sees patients only virtually and points them to appropriate online resources. I am not expecting miracles – there is no magic bullet for this disease – but I would have expected more help than I have had. After all this time, I have only been examined by my GP, rather than a specialist clinic. And I am not alone in this experience.

Most of us are slowly improving with time, but we remain on the corona rollercoaster. Planning and pacing, as tedious as they are, remain key to my daily life. And yet I, like many, mourn my former life: it feels as if we are still living in some twilight zone, unable to work or connect socially in the way we used to. As everyone else has emerged from the pandemic, we have been left behind, with many fighting to get recognition for the impact of this disease on their daily and working lives.

In this country – unlike in the US, where it is recognised as a disability – it is unclear whether long Covid is covered by the Equality Act. This is because of issues of difficulty in definition, and resistance, which I myself experienced when taking a three-hour speed awareness course. My request to split the course over two days was refused. Gaining official recognition of the severity of the disease’s impact has proved difficult. In May, the Equality and Human Rights Commission (EHRC) declared that “without case law or scientific consensus, EHRC does not recommend that ‘long Covid’ be treated as a disability”. This seems to be a complete contradiction to disabilities legislation.

https://www.theguardian.com/comment...ong-covid-finally-have-reason-to-feel-hopeful
 
Autopsies Show COVID-19 in the Brain
— What this means for neurologic COVID symptoms remains elusive

Early this year, leading researchers discussed what we knew -- and didn't know -- about COVID-19 and the brainopens in a new tab or window. Since then, new findings have emerged about SARS-CoV-2 and the nervous system, including the results of an autopsy study that showed the presence of the virus throughout the body and brain.

How can a respiratory pathogen like SARS-CoV-2 cause the nervous system to go haywire? That's the question researchers posed in January, and it's still being asked nearly a year later.

Neurologic complications of COVID are diverse and can be long-lasting, noted Avindra Nath, MD, of the National Institute of Neurological Disorders and Stroke, at the time. "They are largely immune-mediated, the brain endothelial cells being a major target," he told MedPage Today.

Research throughout the year supported this view. In July, an autopsy study of nine COVID patientsopens in a new tab or window showed vascular damage with serum proteins leaking into the brain parenchyma, accompanied by widespread endothelial cell activation. Consistent with other studiesopens in a new tab or window, SARS-CoV-2 virus was not detected in the brain.

But in December, an autopsy report of 44 peopleopens in a new tab or window who died with COVID-19 in the first year of the pandemic showed that SARS-CoV-2 virus had spread throughout the body -- including the brain -- and persisted in tissue for months.

Despite this, there was little evidence of inflammation or direct viral cytopathology outside the respiratory tract, reported Daniel Chertow, MD, MPH, of the NIH Clinical Center and the National Institute of Allergy and Infectious Diseases, and co-authors in Nature.

"We did a total of 44 autopsies and in 11 of those, we were able to do a detailed evaluation of the brain," Chertow told MedPage Today. "In most of those individuals where we had brain [samples], we did find evidence of viral RNA and protein across multiple regions we sampled."

"And in one of those patients, using a modified Vero cell line that expresses the human ACE2 and TMPRSS2 receptors, we actually were able to culture virus from the brain," he continued. "So we were able to show not just the presence of viral components -- RNA and protein -- but also live, replication-competent virus."

...

"Much more needs to be done to help us understand the mechanisms underpinning the neurologic injury we see so vividly in people with COVID-19 both in the acute and the long COVID phase of the disease," he added.

https://www.medpagetoday.com/neurology/longcovid/102384
 
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Government scientist accuses ministers of throwing people with long Covid ‘under the bus’

Leading scientific advisers believe a failure of ministers to take advice in April 2021 has led to millions suffering

One of the Government’s leading scientific advisers has accused it of failing to protect the public from the impact of long Covid.

Professor John Drury, a member the Scientific Pandemic Insights Group on Behaviours (SPI-B) – a sub-committee of the Scientific Advisory Group for Emergencies (Sage), said he continues to be frustrated at the Government’s failure to recommend basic precautions to help prevent the spread of the virus.

He is particularly concerned over the impact of long Covid on the population, and accuses ministers of ignoring advice from SPI-B that, if taken up, he believes would have led to fewer people suffering from long-term illness caused by the disease.
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https://inews.co.uk/news/analysis/g...-throwing-people-long-covid-under-bus-2019708
 
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How is the whole blaming politicians supposed to be interpreted? Because it's not politicians throwing us under the bus, they listen to their experts and they are hearing from them that it's not worth bothering. Does it mean they can't act unless being... told to? Authorized? What is even supposed to be the role of politicians in why medicine has so far continued with the same old failure? Who are the big bad politicians and what exactly are they blocking here?

Even the physicians with LC usually can't bring themselves to see the big picture, rarely seem able to blame their profession. The author 2 comments up either has learned nothing about the big picture of chronic illness, or chooses to stay away from the controversy. It's a medical controversy, driven by politics, yes, but it's exclusively medical politics, not government.

Because over and over again we hear that they don't know enough, the research is bad. Which puts into question why most research is bad without anyone seemingly being bothered by it. It's been 3 years and the effort have been pathetic so far. Most of the published research is the same level of bad it always was. Or it simply gets ignored. Not by politicians, it's not their job, by medical authorities and institutions.

This whole disaster is 100% medicine's fault. And still they blame people not involved in the process. Because no one in medicine is responsible for this, a choice that is not determined by politicians in any way. There is no specialty of chronic illness, not a single tenured professor, no association, no faculty or even a single place where that's all they do. None of which is determined by legislatures or government bureaucracies, this is medicine's turf and they are fully sovereign there.

This is far more dysfunctional and broken than it appeared 3 years ago. And it appeared completely dysfunctional.
 
Subtropical Island said:
If this means: ‘reduce wait times so people get medical help right when they need it’ then great:thumbsup:. If it means ‘sick people need to get better faster’ or worse ‘all sick people need to get back to work within a deadline’ then :banghead::(
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_____This is a primer for reducing access to benefits no access to benefits means more sick people suffering since very few companies will actually want to employ them with the concessions required costing time and money so just another excuse to reduce the costs of benefits.
 


Many changes are always needed, of course, but I'm seeing a specific need to shift an aspect of how mainstream media reports on #LongCOVID, #MECFS and other complex chronic illnesses. Recently there has been a slew of articles written by "learned doctors" (or even the 1/

spouses of physicians) that aim to minimize, deny or psychologize #LongCOVID, #MECFS and other complex chronic illnesses. The problem is that mainstream media gives these article too much weight because they were written by folks with certain credentials who work at certain 2/

institutions. The reality is that the majority of these articles have been intellectually flimsy hit-pieces written by people who have no subject matter expertise whatsoever, yet have sufficient ego to think that their superficial scanning of a cherry-picked pocket of the
iterature is somehow noteworthy. The problem is not the existence of the articles (free speech, etc), the problem is that mainstream media is not identifying them as the fringe pieces that they are. Groups like@WSJ,@TheAtlantic,@newrepublic and@nytimes have platformed

some truly dubious "experts" who wrote trash articles about these conditions that they know nothing about. The intellectual holes in these articles (because non-experts write uninformed pieces) are large enough for legitimate experts to drive trucks through, and yet these
articles get to stand. Here is the problem: If you want to provide a counterpoint to what the experts are saying, by all means do what you think you must. However, please provide it in the correct context: when one of these minimizers, deniers or psychologizers writes a piece

about FND, GET or CBT for the treatment/understanding of #LongCOVID, #MECFS, and others, please have the journalistic integrity to point out that the current biomedical research consensus disagrees with their opinion. There are, in fact, thousands of peer-reviewed articles
showing that these conditions are organic illnesses with non-psychogenic pathobiological causes. It is journalistically lazy and unethical to minimize this fact and just state "but Dr x from *prestigious university* offers an alternate point of view". No - not all points
of view are equal and your narrative need for a journalistic counterpoint should not outweigh the fact that these folks are fringe voices who are espousing *opinions* that are counter to the scientific consensus. Opinions are fine, even helpful to "out" ignorant hacks here and
there, but STOP acting as though the "Dr" in front of their name or the institution that gives them an office validates their opinions on topics that are beyond them. It's embarrassing to your outlet and damaging to people with the conditions they are mischaracterizing.
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