Long Covid in the media and social media 2022

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

Quote:

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 (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.

ETA: Deepl keeps translating "post-covid" to "postcoital", sorry!!

 

"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/

 

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.

 

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.

https://twitter.com/user/status/1550529517109891077

 

‘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 —

 

Australians in general seem to be very skeptical about the impact or existence of LongCOVID (as seen in the coronavirus downunder reddit etc).

 

https://twitter.com/user/status/1551281963906076672

 

https://www.vice.com/en/article/pkgybz/anti-vaxxers-pivot-to-treating-long-covid


https://twitter.com/user/status/1551596832257605635

 

Twitter thread "The idea that large proportions of people will eventually get long COVID to me seems poorly thought-through for two main reasons"

 

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.

 

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).

 

My cruel teacher – Long Covid | Nisreen Alwan | TEDxSouthamptonUniversity

 

[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