Long Covid in the media and social media 2022

I liked this description of the dangers of feeling a bit better in ME/CFS:

And for an inanimate disease, it seems to have a vindictive personality. Most ME/CFS sufferers will start feeling better, take a longer daily walk or talk to a few more friends, and 24 hours later get flattened so hard they can’t lift a fork of dinner to their mouths. The process has a name: post-exertional malaise or PEM. Teasdale can feel it coming on after an interview runs over 90 minutes. His wife says he “looks PEM-y.”

PEM reactions worry Teasdale most when he hears about others trying to shake off long COVID. The temptation to get your life back, to apply positive thinking and goal-setting, often on doctors’ advice, results in a viral bait-and-switch, like accidentally throwing a bucket of gas on a fire when you thought you grabbed water.

That feeling of your body perking up like a cell phone with 1% left on its battery — flaring to life then fading to black before anything can get done — has rearranged Teasdale’s relationship with hope.

“We don’t traffic in hope here,” Teasdale said. “Because hope hurts. Hope is actually the thing that causes me the most pain, when it doesn’t work out. So you know, I can have all the positive thoughts in the world I want. But the reality is there’s something going on inside my body. Whether it’s something with my mitochondria, whether it’s vestiges of the virus in my organs, or brain, we don’t know. But it’s neurological. It’s cardiovascular. It’s pulmonary. And positive thinking doesn’t change that.”

Twitter thread:

 

The data is definitely and obviously bad. It's not even an asking the wrong questions, it's just bad data collection and bad calculations. I'm in touch with the author and the editor to try to get this fixed.

 

The stubborn refusal of every medical and public health institution to adequately warn about Long Covid will be a black mark on the medical profession for decades. It's entirely out of 19th century beliefs about "mass hysteria", one of the weirdest examples of tradition being the tyranny of dead people.

 

https://twitter.com/user/status/1534224086057988097

 

https://twitter.com/user/status/1534330952167702529

 

How long COVID is cutting HCP careers short
https://www.mdlinx.com/article/how-long-covid-is-cutting-hcp-careers-short/4vUi7sSC46SyMMBuJekQ8D

• Individuals with long COVID may deal with symptoms ranging from fatigue, slurred speech, and vertigo to digestive difficulties, autoimmune conditions, and depression.
  
• Some HCPs with long COVID have experienced medical gaslighting based on sex and race.
  
• Doctors with long COVID who plan on returning to work can do so gradually, but this may require support from colleagues and managers.
  

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The German health minister regularly tweets and speaks about Long Covid. Yet the German government is doing absolutely nothing substantial about it. So what is the explanation here? Is he all wind? Or else what is blocking any effort whatsoever when the health minister keeps talking about doing something but the entire health ministry appears locked in denial, probably deferring to the strong tradition of psychosomatic medicine in German healthcare.

Although he often talks about prevention, rarely about actually doing something for those already ill. Can't remember even once, although my memory is unreliable and I may have missed it.

https://twitter.com/user/status/1534469798456852480

 

Brief mention of CFS in this pay-walled article

"Women also appear to be more affected than men, and this trend is also seen in conditions such as chronic fatigue syndrome, which can have cross-over symptoms similar to those experienced by people with long-Covid."

https://www.independent.ie/irish-ne...egacy-of-further-waves-of-virus-41735188.html

 

I've not seen things like this from ME patients:



Surprising.

 

Not specifically about Long Covid but it is a fairly obvious sub-text (in my opinion).

Wizz Air boss sparks backlash over fatigue request

"Wizz Air is facing a backlash from pilot unions after the airline's boss appeared to call on crew to work through fatigue.

Chief executive Jozsef Varadi said staff should go "the extra mile" when tired so that the airline could avoid cancelling flights."

....

"On Wednesday Mr Varadi told workers: "Now that everyone is getting back into work, I understand that fatigue is a potential outcome of the issues but once we are starting stabilising the rosters, we also need to take down the fatigue rate.

"I mean, we cannot run this business when every fifth person of a base reports sickness because the person is fatigued. We are all fatigued but sometimes it is required to take the extra mile."

Mr Varadi added, "The damage is huge when we are cancelling the flights, it's huge. It is reputational damage of the brand and it is the other financial damage, transactional damage because we have to pay compensation for that.""

https://www.bbc.co.uk/news/business-61741139

 

Psychiatric Times: Neurological and Neuropsychiatric Complications of COVID-19

This is another article about the 2022 annual meeting of the American Psychiatric Association, this time about Avindra Nath's presentation:

Nath explained that individuals who develop COVID-19 can be divided into 2 groups: (1) those who have very severe symptoms at the time of COVID-19 onset, but then gradually improve, and (2) those who have mild symptoms at onset or even improve for a while, but then develop new symptoms weeks or months later.

“If you look at patients acutely and they have lots of symptoms, over 3 to 5 months, many will get better, but some will not. And if they don’t get better by then, chances are they won’t,” Nath said.

(...)

“First onset of major depressive illness, anxiety, or psychosis [with none] in the past history is directly related to this infection,” Nath added, also noting that some symptoms of long COVID overlap with symptoms of other diseases such as myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), Gulf War illness, and post Lyme disease syndrome. “It’s quite possible that all of these are related to one another,” Nath said. “It’s just that the event that precipitated them may be somewhat different.”

In order to learn more about what happens to the brain during and following COVID-19 infection, Nath shared that he and colleagues analyzed the brains of individuals who had died of COVID-19 in MRIs. They found, in part, that perivascular fibrinogen leakage indicated vascular injury, and that platelets were activated and formed clots in small blood vessels.

Based on this and additional neurological and neuropsychiatric research, Nath suggested that future directions should include more clinical trials involving immunomodulatory agents and more research involving biomarkers for neuronal injury (NfL, pNfH, GFAP, SNAP-25), vascular injury (sICAM, VEGF, P-selectin, E-selectin, MMP-3, antibodies to ACE2), and immune activation.​

 

This major deficiency of language, with its associated failure to communicate and understand pathological fatigue, as distinct from the normal feeling of physiological tiredness, represents a huge risk.

The Germanwings disaster resulted in the deaths of all onboard (144 pax/6 crew). The cause was found to be pilot suicide (/murder). The co-pilot deemed responsible had been 'treated' for a psychosomatic illness with anti-depressants. Pictures would suggest he was previously fit and healthy.

Clearly he should not have been flying. However, he tried to get help for his symptoms from 40 doctors over some years. The poor man tried very hard to get expert help. There's every chance he actually had a chronic postviral or related neurological condition. Yet the medical and commercial systems failed him and he will probably be considered as a monster that killed 149 people, while the blame might actually lie in a very different location.

There is a high chance of unfortunate second order effects.
https://twitter.com/user/status/1530463862897639424

 

Exclusive: Zahawi orders long Covid shake-up as teacher cases rise

Education secretary to issue new guidance on long Covid, as unions say teachers should get up to 12 months of full-paid leave if diagnosed with the condition

https://www.tes.com/magazine/news/general/nadhim-zahawi-orders-long-covid-schools

 

In the Pipeline blog:

Long Covid, Long Other Things

Derek Lowe's blog (which is generally an insider perspective on the pharma industry) is usually quite good, but this one, which takes a somewhat skeptical view of LC, ME, etc, is pretty frustrating.

He also took a pretty positive look at the Sneller NIH Long Covid paper from a few weeks ago.

 

Incredible how just the poor language used by professionals is causing so much confusion and failure. This is just like the famous failure of a Mars lander that crashed because one team used metric and another used imperial, except it's routine, it happens every day, it's considered normal and good and is impossible to reform. You point out the issue and damn it people just keep looking at your finger instead of what it's pointing at.

Same with brain fog. You regularly see articles, and there's a recent one in New Scientist, where they proudly announce they're making progress with brain fog, and then you read and it's so obvious that they don't even understand what the problem is at all, haven't even begun to work at it because there is a complete information breakdown because of damn language issues.

Like the Star Trek episode where the translator fails because they're dealing with a species who speaks in metaphors, except no one accepts that they must make an effort to understand and insist they must keep using their normal language as it's the others who should adapt to it. Well the main difference is that in this episode everyone was stuck together and they had to cooperate, while our BPS overlords succeed best with a state of confusion and failure.

And to think that inventing the name "chronic fatigue" is considered one of the best achievements to come out of the BPS ideology. Literally celebrating failure.

 

https://www.theguardian.com/society...ce-between-a-life-with-care-or-no-life-at-all

 

There have been a few articles published on the opacity and dysfunction of the NIH initiative, where secrecy is the norm and that's never a good sign. This is what oversight is all about and why it needs to be universal, no one can self-regulate themselves, no organization or group of people can place themselves in an isolated bubble and somehow get it right. It's basically the main reason the whole BPS ideology is guaranteed to fail, it's completely detached from real life and there is no process to correct or even influence the mutual admiration society.

https://twitter.com/user/status/1535665209121054720