Long Covid in the media and social media 2022

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This article is from 19th July. Are patient led Long Covid organisations really calling for more rehabilitation?

WHO Coping with the unknown - a family's story of living with long COVID

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The scale of long COVID – a long-term condition that will put significant burdens on health systems worldwide for years to come – is only starting to be realized.

WHO/Europe is in the process of partnering with Long COVID Europe, a network of patient-led associations that has been gathering information on the condition and sharing it with interested stakeholders since its foundation last year.

WHO/Europe has also been working with patient groups to define priority areas where action is needed. It is now calling upon governments and authorities to focus attention on long COVID and its sufferers through greater:

  • recognition: all services must be adequately equipped, and no patient should be left alone or have to struggle to navigate through a system that is not prepared to, or not capable of, recognizing this very debilitating condition;
  • research and reporting: data gathering and reporting of cases, and well-coordinated research with full participation of patients, are needed to advance understanding of the prevalence, causes and costs of long COVID; and
  • rehabilitation: this cost-effective intervention is an investment in building back healthy and productive societies.
 
Swedish columnist Kjöller is back again, speculating about "cultural illnesses", social contagion and mass hysteria. Lots of people in the comments are praising her for being "so brave", "for having the courage" to write about this :grumpy: (ME is not mentioned, this time.)

Hanne Kjöller: Samma symtom har i olika tider fått olika namn – nu talar vi om postcovid (Paywalled)
https://www.dn.se/ledare/hanne-kjol...der-fatt-olika-namn-nu-talar-vi-om-postcovid/

She comments on the so called "Bua illness" in the 1980s, when a lot of young people -- mostly school girls -- in a Swedish town were suffering from hip pain. Kjöller sees that as a case of cultural illness/mass hysteria, and draws parallells to long covid. She claims that the statistics on the number of children treated for long covid at specialist clinics in certain geographical areas compared to the number of children treated in primary care settings confirms that there is social contagion.
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Hanne Kjöller: The same symptoms have had different names in different times - now we're talking about post-covid

[...] One of the comparatively few boys who fell ill has thought a lot about what happened. Perhaps, he says, there is a psychological explanation. But he stresses that the pain in his hip was very real.

A woman is on the same track in an interview in Hallands Nyheter from 2018. She was really in pain and thinks that everyone else was too. But she also sees how what hurts in the body can start in the mind:

"It's fascinating how the brain can trick you. It became a bit of an identity when everyone was jumping around on crutches. You got attention and a community."

The illness was able to spread to a handful of neighbouring municipalities before Mölndal stopped the infection. There, they chose to home-school the sick instead of hospitalising them or making them jump around on crutches at school. That made the illness die out.

One of the doctors who was there from the start in Bua says 30 years later:

"I still think it started as some kind of infectious disease but there was a psychological spread as well and it increased as this got more and more attention."

I think of the epidemic among the teenage girls in Bua when I read the DN article on post-covid illness among children. Again, it is girls who dominate. Again, there is a large category of patients where no abnormal markers are found, not even antibodies to show that the children have had covid. Again, regional differences are found indicating a social spread of infection, to some extent medically driven - as in Bua and other cultural diseases.
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The phenomenon is perhaps best described by a large French registry study. With the exception of impaired sense of smell, all long-term symptoms were more common in the group who had not had covid, but who thought they had, than among those whose blood tests showed they had had covid.

The research team interprets this to mean that muscle pain, fatigue, cognitive impairment, tingling, numbness, headaches, chest pain, breathing problems, coughing, fogginess, dizziness and more are simply symptoms that are normally circulating in the population. And as the late Professor Karin Johannisson has pointed out: in different times and in different cultures, these symptoms have been given different names.
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ETA: Deepl keeps translating "post-covid" to "postcoital", sorry!! o_O:laugh:
 
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Rehabilitation based on medical needs using a multi-disciplinary approach, freed from counterproductive administrative and financial hurdles, with sufficient support for those with little or no access to informal care.
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I have little to no idea what that means - it could mean virtually anything, from kittens to forced uranium mining.

I suspect this level of vagueosity is very deliberate.
 
Andy said:
"Rehabilitation based on medical needs using a multi-disciplinary approach, freed from counterproductive administrative and financial hurdles, with sufficient support for those with little or no access to informal care."

https://longcovideurope.org/
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This could constitute a guileless comment on my part, but doesn’t rehabilitation generally connote the absence of any ongoing pathological process? You wouldn’t tell an athlete that a sports rehab program was appropriate if you continually shattered his or her leg each day.

The rest of the verbiage seems like an intentional distraction from the fact that rehab itself is a BPS device
 
The CDC director calling Long Covid a "manifestation", which I'm not entirely sure is an upgrade or a downgrade on the usual BPS nonsense, but is still off the mark. 2.5 years and this is the best they can do. We are all in the absolute worst possible hands.

It's clear by now that all this pretense about being a "mystery" and "unexpected" is just the same old strategic lying that pretends to recognize the problem while having zero intention of doing anything about it.

There are thousands of examples of people raising the alarm as far back as early 2020, and still most physicians and medical authorities play dumb, because it's better to play dumb than admit incompetence, even though they are functionally the same.

 
I actually thought that response by Walensky was ok. 'Manifestation' might not be the best word, although it is reasonably accurate, but it is true that there are a range of health impacts following Covid-19. I think it is useful to be very clear that 'Long Covid' covers a range of symptoms, probably resulting from a range of pathological impacts.

Yes, it's a shame that there wasn't acknowledgement that ME/CFS is one such possible outcome, and yes, we find ourselves here partly due to the CDC's lack of attention to post-infection consequences of other diseases.
 
‘Sobering, staggering numbers’: Half a million Australians to get long COVID in coming months (Sydney Morning Herald)

Associate Professor Nada Hamad, haematologist and senior staff specialist in bone marrow transplant, now with long Covid —

Hamad minimised her own COVID symptoms after her second infection in June, when she developed autonomic nerve dysfunction culminating in a two-week hospital admission.

“I gaslit myself into thinking that there was nothing wrong with me because there is this sense in the community that ‘oh this is just a mild wave’ and we all just want it to go away,” she said.
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Her body could no longer regulate her heart rate and blood pressure, and she fainted twice before she realised she couldn’t stand for more than a couple of minutes without collapsing.

Hamad is still experiencing cardiac and respiratory symptoms, headaches and brain fog.
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Health Nerd gets it partly right, in that the research on Long Covid is awful, with loose questioning often scooping up a ridiculously high number of people into the Long Covid basket.

But he thinks Long Covid is associated with more severe acute disease, and so the risk will decrease as variants and vaccinations and treatments decrease the incidence of severe acute disease. Again, it's bad Long Covid research that includes the problems caused by severe disease like lung damage as symptoms of Long Covid. Actually, there is quite a lot of evidence suggesting the risk of Long Covid (= ME/CFS) is not related to the severity of the acute disease. Health Nerd is saying what people want to be true, because then young active healthy people don't have to feel at risk and can continue to expose themselves to repeated infections.

(added) I liked this tweet in reply:
The question I have is can a virus employ people to do its PR? Sure seems like it.
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(added again - there are lots of good reply tweets to Health Nerd from Lars SG :thumbup:)
 
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The fact that bad research plays into denial is very unlikely to be a coincidence. It's basically the process.

I want to mention recent trends I've been seeing on LC forums: 1) no one expects anything out of medicine, healthcare is either unable or unwilling to help and the gaslighting isn't worth the trouble and 2) it's all about hope, since medicine is obviously not part of the solution and most people recover, just suck it up, hope you're in the majority who recover and convalesce. No one else cares anyway.

Basically 2) is the complete opposite of the biopsychosocial tropes, clearly remission and recovery are a natural process and convalescence is the rational response. People are just waiting for the recovery, since for most it will happen, just as true after weeks and months as after just a few days. It's just sad that reality is completely irrelevant, as this completely debunks every trope, the entire BPS model is a sham and it won't make a damn difference.

This definitely explains the bizarre claims of people recovering from doing this and that, it basically doesn't matter, most do recover, over weeks, months or years. They do nothing special and it can't be sped up in most cases, although there are various claims of some treatments helping. Obviously people who claim to have recovered from a return to activity is simply a matter of retrospection and latching on to an explanation given the void of expertise. It's the outcome, not the process, the same way a job gives you a salary, not the other way around.

But seriously it's basically overwhelming how utterly useless healthcare is generally perceived, and all rightfully so. No one expects anything effective out of medicine here, everyone's a cynic. If it were any real, it would be the reverse of a white lab coat effect, the "secret ingredient" of placebo. Predictably, it changes nothing. Literally nothing. Healthcare is largely a non-factor here, the experts are completely missing in action.

Instead it's all about holding out for hope, give it time. Most understand that help is not on the way and that medicine is officially apathetic, so hope is all there is. And with most recovering, I don't see how medicine won't be fully content with continued denial. It appears as if LC will have changed absolutely nothing to attitudes, this failure is inherent to medicine.

Turns out no one hears the giant smoking gun firing off if they all have their ears hermetically plugged in.
 
CRG said:
Twitter thread "The idea that large proportions of people will eventually get long COVID to me seems poorly thought-through for two main reasons"
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I think part of the problem is that you have a group of people who insist that LC risk is 20-50% per infection and possibly higher for re-infections (thanks to that poorly done Al-Aly VA study), so they conclude that everyone or most will have LC within a couple years.

And then there's another group that scoff at that idea and say the risk is low. Which is partly true because everyone is not going to get LC (risk per infection is more like 3% according to ONS data and I think it's likely that we'll see fewer with LC after re-infections). But of course the risk can be quite high without everyone getting Long Covid! So instead of a real discussion about the terrible burden of LC affecting a few percent of people, we end up with people staking out positions that either everyone or barely anyone will end up with LC.

It's a really unfortunate dynamic and it's only getting worse with the constant flow of poorly-designed studies based on very broad definitions of Long Covid (and of course increasing polarization between those who are still trying to avoid Covid and those who aren't).
 
[UK] 110,000 workers missing from work as a result of long COVID at a cost of £1.5 billion a year in lost earnings

"The number of people with long COVID (defined as reporting symptoms more than four weeks after infection) has been on the rise – with the latest ONS figures showing that there were almost 2 million people with the condition as of May 2022, around double the number a year before.

New IFS research shows that having long COVID causes one in ten sufferers who were in work to stop work while they have the condition. It is likely that around 110,000 people are missing from work at any one time as a result of long COVID (i.e. working no hours at all, generally because they are on sick leave), at a cost of almost £1.5 billion in lost earnings per year. The research also finds that those who were less well off before the pandemic are more likely to suffer from long COVID."

https://ifs.org.uk/publications/16123
 
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