Long Covid in the media and social media 2022

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Kalliope said:
Research director from the Norwegian Institute for Public Health, Signe Flottorp, says the study is interesting but that we now know that vaccine protects against persistent symptoms and that Omicron has lower risk of long covid than the previous variants. She worries that people might get scared of something that's not as relevant anymore. It's not good that the participants have been struggling for a long time, but luckily few experience serious symptoms.
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This obsession is so bizarre and out of place. Awareness campaigns against things like drunk driving will often feature the scariest possible outcomes for what is an everyday thing for most people. Risks literally have to be constantly emphasized so that people are reminded of them. It doesn't even make sense, it's literally avoiding telling the truth because the common folk can't handle the truth, treating everyone like children.

It's truly one of the most bizarre obsessions in modern life and it seems to basically rule all healthcare, the need to minimize real risks while obsessing even more on completely imaginary threats. It effectively places imaginary fear-causing-illness, not a thing, as far more important than actual ruinous chronic illness. Incredibly misplaced priorities based on belief systems. What an awful mess.
 
The lack of understanding and appropriate messaging and warnings by the medical profession continues to cause harm. Unsure if this is happening more than we know, but even some LC patients attempting a form of GET on themselves. Spoiler, it doesn't help.

 
News article about the Swedish Covid Association's recent survey :thumbup:

Enkätundersökning: Var fjärde med postcovid måste sluta jobba
https://www.svt.se/nyheter/lokalt/ost/enkatundersokning-var-fjarde-med-postcovid-maste-sluta-jobba

Auto-translate said:
Survey: one in four post covid sufferers must stop working

A quarter of the Swedish Covid Association's members have had to stop working because of their symptoms. This is according to a new survey recently conducted by the association.

- Four out of ten feel that they have not received understanding from their surroundings. There are still many misconceptions and ignorance about post covid, says the association's president Tove Lundberg.

During the summer of 2022, the Swedish Covid Association conducted a survey to which 1,155 of its members responded. The survey shows that the symptoms after covid have major consequences.

Unable to take care of the family

One in four responded that they have had to stop working or stop their main occupation. Nine out of ten have had to give up meaningful leisure activities.

- Very many report that they are unable to look after their family, spend time with friends or exercise. More than 90 per cent say it is fatigue, a huge amount of tiredness, that makes it difficult for them in their daily lives. A great many also have cognitive difficulties," says Tove Lundberg, chair of the association.

Only three percent got the right help

Only three per cent say they have received adequate help in their care.

- We have long been told that it is the risk groups that are more likely to be severely affected by covid-19 and that the rest of us will have a mild illness and will be fine. But that overlooks the fact that many of us are still sick two years after covid, even though we were not in a risk group,' says Tove Lundberg.

Post covid clinics needed

She believes that the general public and health care providers do not have enough knowledge about post covid.

Another issue the association wants to raise is that post covid is an umbrella diagnosis that can involve very different symptoms and degrees of disability.

- We believe that people with mild symptoms are helped in primary care. But there is also a need for multidisciplinary post covid clinics that can help those with severe post covid.

Poor understanding - and one-sided view of risk groups

Many people also say they have received poor understanding from the outside world.

- We believe that the general image that those of us who are not at risk are not at risk of becoming seriously ill is an aggravating factor. We did not ask the children in this survey, but reports from the Children's Ombudsman show that children with post covid also do not get the understanding they need. There is an idea that children are only mildly affected, which is not true for everyone.

The Swedish Covid Association has sent out a survey to all its more than 3 000 members. 1 155 people over 18 with postcovid have responded to the survey.

The survey asks how members have been affected in their daily lives by postcovid and which limitations of symptoms have the greatest impact. The Association also asked about the care they have received.
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More about post covid on the news in Sweden:

Linda, 34: ”Hela livet har förändrats”
https://www.svt.se/nyheter/lokalt/ost/hela-livet-har-forandrats
Auto-translate said:
Linda, 34: "My whole life has changed"

It was just like an ordinary cold, but afterwards everything changed.

- It's hard to describe the tiredness when it just stops, says Linda Enkvist from Linköping.

Linda has had post covid since December 2021. She gets tired faster and can't do the same things she used to.

- When I've been working half-time, I really can't do anything more that day. I can only rest.

In the video, she explains how her daily life is affected.
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News article about a Swedish long covid study:

Forskare föreslår: Testa alla med symptom efter covid-19
https://www.svt.se/nyheter/lokalt/ost/forskare-foreslar-testa-alla-med-symptom-efter-covid-19
Auto-translate said:
Researchers suggest: test everyone with symptoms after covid-19

Professor Richard Levi and Consultant Wolfram Antepohl believe that comprehensive testing is needed to detect covid patients who may benefit from rehabilitation. In the video, they explain how.

A study at Linköping University shows that a high proportion of patients who were hospitalised for covid-19 in spring 2020 have residual problems two years later that affect their lives. Because the symptoms can be diffuse, there is a high risk that they will not be detected during a regular medical examination, the researchers say.

In a study at Linköping University, the researchers followed up patients hospitalised for covid-19 in spring 2020 after three months, five months and two years.

The results show that a large proportion of patients have symptoms two years on.

20-25 percent had serious problems

- From this first pandemic episode, there is no doubt that a significant proportion of hospitalised patients had serious residual symptoms. In 20-25% of cases, their ability to work and quality of life is still impaired after two years," says Richard Levi.

Because symptoms can vary so widely, a conversation or a simple medical examination is not always enough to detect that patients need rehabilitation, the researchers say.

- A simple conversation can still enable the patient to hide these difficulties, so to speak," says Wolfram Antepohl.

Brain X-rays and tests needed

Based on the study, the researchers have developed a list of symptoms in seven different areas that can be used to identify the problems. But the researchers say that patients may also need to be tested by different professions. This could include neuro-testing and even brain X-rays.

- We don't necessarily think that a broad screening of all patients is needed. However, it is very important that there is sensitivity when patients express difficulties in their daily lives,' says Wolfram Antepohl.

If this is not done, the researchers believe that patients risk being left without rehabilitation that could improve their health and quality of life, and they may even be absent from work for long periods of time.

In the video you can hear more about the study and what tests and symptoms it may involve.

745 people who were treated in hospitals in the Östergötland Region during March-May 2020 were followed up in a study that included all patients.

158 patients were tested and interviewed in several rounds afterwards.

The results show that one fifth of the patients had residual rehabilitation needs after five months.

Many of the problems are due to some type of brain dysfunction.

The study stresses the importance of systematically following up patients to avoid missing underlying problems and rehabilitation needs.
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SNT Gatchaman said:
The lack of understanding and appropriate messaging and warnings by the medical profession continues to cause harm. Unsure if this is happening more than we know, but even some LC patients attempting a form of GET on themselves. Spoiler, it doesn't help.

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I lived like this for the three years between getting sick and learning what ME was. It was horrible, and I'm extremely lucky I didn't get permanently worse. I wouldn't wish this on anybody. We need more awareness of PEM.
 
Lou B Lou said:
extreme tiredness
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just found this on a patient support forum site

"myalgic encephalomyelitis
  • Chronic fatigue syndrome (CFS) is a long-term illness with a wide range of symptoms. The most common symptom is extreme tiredness. CFS is also known as ME, which stands for myalgic encephalomyelitis."
there is feedback facility but you have to sign up.

(curious to know what this thread is about "This site only serves to confuse me thus far.")

https://www.smartpatients.com/conversations/this-site-only-serves-to-confu
 
Seems like Twitter is censoring research articles about Long Covid. I've seen several of them before being marked as misleading because of vaccines, even though the tweet was not about vaccines. I assume this is a filter improperly tuned, but it seems to catch anything having to do with any health problems after Covid or vaccines.

I've also seen other flags like this on otherwise real information. Recently some tweets got moderated out for pointing out how the CDC recently rewrote out monkeypox being airborne. As in literally they recently removed every mention of it in most guidance. Public health is now 99% public relations, everything is about pretending everything is alright. Except lockdowns and measures, those are agents of doooooooom.

What a mess, we are a bunch of toddlers wrecking ourselves:
 
Other Viruses Offer Hints Toward the Mystery of Long COVID

Aug. 18, 2022 – Researchers are chasing a range of potential culprits in the race to find the causes of long COVID. Some things they agree on: There will be a number of different causes, and the symptoms will vary wildly from case to case.

The two leading theories: The persistence of the coronavirus that causes COVID-19, and an overactive immune response.

There’s evidence the SARS-CoV-2 virus – or at least pieces of it – can hide out and linger in the body, and it’s possible this is feeding an ongoing, over-the-top immune reaction.

Other viruses are known to do this. Epstein-Barr virus is seen as the cause of most cases of multiple sclerosis. Chronic fatigue syndrome, long a medical mystery, has also been linked to viral infections.

With a fired-up immune system meeting up with a lingering virus, the causes of long COVID promise to be as numerous as the range of symptoms it produces – 62, according to a recent U.K. study.

Long COVID is a syndrome – a cluster of symptoms that can be driven by different things in different people – says Michael VanElzakker, PhD, of the Division of Neurotherapeutics at Massachusetts General Brigham Hospital in Boston.

“So, it doesn't have to be one cause, one symptom, one diagnosis, one treatment,” he says. "It’s a convergence of mechanisms that can drive subjective symptoms in different ways in different people".

In a preprint study that has not yet been peer-reviewed, they reported they found evidence that COVID-19 infection had reactivated herpes viruses – Epstein-Barr virus and varicella-zoster virus, which causes chickenpox and shingles. These herpes viruses never leave the body, and Iwasaki’s team found evidence the immune systems of long COVID patients might be responding to these reactivated viruses.

They also found evidence of exhausted immune cells known as T cells, and found that the single most obvious difference in the blood of long COVID patients versus people who didn’t have long COVID was the level of the stress hormone cortisol.

Cortisol levels “alone were the most significant predictor for long COVID classification,” they wrote.
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https://www.webmd.com/lung/news/20220818/other-viruses-offer-hints-mystery-long-covid
 
Amazing. Build useless clinics. Argue the clinics are useless so nothing should be done. It's true that the clinics are useless, they are built to provide useless services, don't learn and are based on debunked pseudoscience. And that's used to argue to completely cease doing anything. Amazing. Just like in politics: run a public service poorly so it can be privatized for profit.

So long, Covid clinics
https://www.pulsetoday.co.uk/views/copperfield/so-long-covid-clinics/

I’m not surprised that more than one in ten GP referrals to Long Covid clinics are rejected. And, frankly, I don’t care.

Not surprised, because having only 10% of referrals bounced back in these days of pandemic box-ticking and mandated A&G is a bit of a result.

And don’t really care because, in all honesty, a more logical rejection rate would be 100%. By which I mean that these clinics seem to be an exercise in futility.

This was brought home to me recently by one of the few patients I have actually sent to a Long Covid clinic. After the obligatory and labyrinthine pre-referral polyinvestogram hoop-jumping exercise, he was distinctly unimpressed by his eventual assessment and treatment, which apparently amounted to a phone-call, an emailed PowerPoint and a weblink.

This is definitely not the fault of the Long Covid clinic. We’re dealing here with a disease with no clear definition, no diagnostic test and no specific treatment. Try running a clinic on that basis.

Plus, of course, there’s the thorny issue of self-selection. Such diagnostic criteria as there are pretty much amount to, ‘I think I’ve had Covid and I now think I have Long Covid’. And while there is clearly a cohort of patients who don’t have a demonstrable post-Covid complication but do have some form of debilitating post-viral syndrome, there also exists a significant number of TATT chancers delighted to latch onto a zeitgeisty label to validate their symptoms, with a view to pursuing any number of possible agendas.

All of which means, I think, that Long Covid clinics are a waste of time, money and energy, resources which the NHS is already creakingly short of. Besides, I suspect these clinics were set up largely to act as a conscience-salving penance for a Government feeling guilty about mid-Covid cock-ups rather than to actually help Coviddy patients.

The result is a service which is over-sold to the public and set up to fail. It needs scrapping. So long, Long Covid clinics.​

You have to marvel at this:
This is definitely not the fault of the Long Covid clinic. We’re dealing here with a disease with no clear definition, no diagnostic test and no specific treatment. Try running a clinic on that basis.
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Of course it's the fault of the clinics. And whoever designed the clinics. And runs the clinics. And is forcing ideological nonsense to begin with. How do these people think other diseases became understood? By jerking around waiting for the sky to give the answer?

Obviously this person understands that the way to gain expertise and develop effective skills and treatments starts not knowing anything. This is how everything works. But it's also true that the clinics were built to fail, and this is 100% the fault of the people responsible for the healthcare system. Which clearly is no one.

Again continues the principle that medicine is completely above any criticism, where failure is always other people's fault, even after not trying, even after building fake clinics on debunked ideology? Still everyone's fault but medicine. Amazing. This is a profession in crisis, having plateaued for too long and unable to make any move in any direction that doesn't loop back to familiar failure.
 
rvallee said:
Amazing. Build useless clinics. Argue the clinics are useless so nothing should be done. It's true that the clinics are useless, they are built to provide useless services, don't learn and are based on debunked pseudoscience. And that's used to argue to completely cease doing anything. Amazing. Just like in politics: run a public service poorly so it can be privatized for profit.

So long, Covid clinics
https://www.pulsetoday.co.uk/views/copperfield/so-long-covid-clinics/

I’m not surprised that more than one in ten GP referrals to Long Covid clinics are rejected. And, frankly, I don’t care.

Not surprised, because having only 10% of referrals bounced back in these days of pandemic box-ticking and mandated A&G is a bit of a result.

And don’t really care because, in all honesty, a more logical rejection rate would be 100%. By which I mean that these clinics seem to be an exercise in futility.

This was brought home to me recently by one of the few patients I have actually sent to a Long Covid clinic. After the obligatory and labyrinthine pre-referral polyinvestogram hoop-jumping exercise, he was distinctly unimpressed by his eventual assessment and treatment, which apparently amounted to a phone-call, an emailed PowerPoint and a weblink.

This is definitely not the fault of the Long Covid clinic. We’re dealing here with a disease with no clear definition, no diagnostic test and no specific treatment. Try running a clinic on that basis.

Plus, of course, there’s the thorny issue of self-selection. Such diagnostic criteria as there are pretty much amount to, ‘I think I’ve had Covid and I now think I have Long Covid’. And while there is clearly a cohort of patients who don’t have a demonstrable post-Covid complication but do have some form of debilitating post-viral syndrome, there also exists a significant number of TATT chancers delighted to latch onto a zeitgeisty label to validate their symptoms, with a view to pursuing any number of possible agendas.

All of which means, I think, that Long Covid clinics are a waste of time, money and energy, resources which the NHS is already creakingly short of. Besides, I suspect these clinics were set up largely to act as a conscience-salving penance for a Government feeling guilty about mid-Covid cock-ups rather than to actually help Coviddy patients.

The result is a service which is over-sold to the public and set up to fail. It needs scrapping. So long, Long Covid clinics.​

You have to marvel at this:

Of course it's the fault of the clinics. And whoever designed the clinics. And runs the clinics. And is forcing ideological nonsense to begin with. How do these people think other diseases became understood? By jerking around waiting for the sky to give the answer?

Obviously this person understands that the way to gain expertise and develop effective skills and treatments starts not knowing anything. This is how everything works. But it's also true that the clinics were built to fail, and this is 100% the fault of the people responsible for the healthcare system. Which clearly is no one.

Again continues the principle that medicine is completely above any criticism, where failure is always other people's fault, even after not trying, even after building fake clinics on debunked ideology? Still everyone's fault but medicine. Amazing. This is a profession in crisis, having plateaued for too long and unable to make any move in any direction that doesn't loop back to familiar failure.
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Copperfield wrote nasty things about people with ME in the past.

e.g.
"Question: What would be your initial response to a patient presenting with a self-diagnosis of ME? Possible answers:

a) Are you by any chance a teacher?
b) Thank you for making the effort to come along. I am sure we will be able to help.
c) For God's sake, pull yourself together, you piece of pond life.
d) Well, lets just explore that, shall we?"


(The `correct' answer was (c).
Dr Tony Copperfield (a pseudonym), described as being a GP in Essex, in Doctor magazine, 2000.
 
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Dolphin said:
Copperfield wrote nasty things about people with ME in the past.
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there also exists a significant number of TATT chancers delighted to latch onto a zeitgeisty label to validate their symptoms
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Disgraceful.

rvallee said:
By which I mean that these clinics seem to be an exercise in futility.
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As opposed to the PACE trial et al, which is futility in exercise.
 
Jaybee00 said:
Taylor Lorenz retweeted Jaime S tweet posted above.


ETA Taylor Lorenz is a media/tech reporter for the Washington Post. She tends to get embroiled in a lot of controversies.

https://en.m.wikipedia.org/wiki/Taylor_Lorenz
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I think I understand what's going on.

The widespread denial of LC has lead the antivaccine folks to try to fill the void, pushing the idea that it's not infections causing all those problems, especially heart problems, it's the vaccines. I see the warnings being about vaccines even when the tweet and article have nothing to do with vaccination. It's probably a simple keyword filter with a few conditions.

Platforms like Twitter have to push back against real disinformation, and probably end up flagging lots of LC content. Now here's the beauty, that since LC denial is widespread and this moderation relies mostly on reports, it's easy to abuse this. So it's probably the result of people reporting, being flagged as vaccine disinformation, and Twitter doesn't have the human resources to check all of this, especially with the mountains of reports on actual disinformation.

There are plenty of articles and papers pushing denial, I commonly see comments saying it's proven to be psychogenic. From official sources. Which Twitter relies on to verify. Sources that say contradictory things. Which is great. So yay modern propaganda and mass disinformation.
 
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