Article: We Might Have Long Covid All Wrong (covers FND,ME/CFS,includes Sharpe,Garner, Carson and more).

[RedFox]

She said it was down to hysteria about the millennium and seemed proud of the fact she did not look at any medical evidence. The millennium came and went, ME/CFS still affects millions and there has not been a peep out of her!

Oh, yeah, I experienced a lot of psychosocial distress worrying that all the computers were gonna crash...when I was 4 years old and 17 years before I got sick.

Natalie Shure's tactics are so similar to Elaine Showalter's (in 'Hystories' pub 1997, she asserted that ME, which she called CFS as was standard in the US at the time, and Gulf War Syndrome, were both hysteria spread by social contagion via the media).

That's hilarious. I heard about ME/CFS twice in my life before I had it. The first time was a PSA when I was around 10. The second was finding a blog when I was around 15. I got sick when I was 21.

 

[Mithriel]

It really is ridiculous and typical of the assertions made about CFS and no one in authority ever queried the evidence for them.

I was ill for 17 years before I was diagnosed and was not at all deconditioned when that became the theory. Just asking patients would have shown they were wrong 40 years ago.

It proves that they were driven by ideology not any desire to help people with the disease. Doctors and researchers who looked for biological causes started by looking at what patients experienced. When Derek Pheby asked for funds to find out what the symptoms of ME actually were they gave money for the PACE trial instead.

 

[rvallee]

I am 100% convinced that almost everything FND is in the post-infectious chronic illness category. At best it's 99%. I found almost everything covered in the FND banner: gait disorders, balance issues, being unable to use some muscles (e.g. being unable to hold a squat, the muscles just give up), dissociation (clearly neurological) and even lots of non-epileptic seizures. Most seem to resolve with time, which is the real explanation for their claims of recovery: they have nothing to do with them as they would happen anyway in most cases.

These kids with LC unfortunately seem to be treated as FND:

Long Covid can be debilitating, even for healthy kids "Looking at our first 60 patients that came to our clinic, we found that about 13% of our patients had these functional neurologic deficits."

« In the case of our kids, it most always presents with loss of limb function, an inability to walk or move an arm, something like that," Edwards said. "When you're talking about 60 kids, 13% is a big number »

 

[SNT Gatchaman]

I am 100% convinced that almost everything FND is in the post-infectious chronic illness category. At best it's 99%.

I'm going with 100%.

And with respect to the children, just look at Ayden in the tweeted image above. FND and Chalder would no doubt have this all down childhood trauma. I'm going to guess Ayden had a most excellent childhood until his illness, with zero (emotional) trauma.

Her 12-year-old son, Ayden, had Covid-19 in November 2020. He recovered and seemed fine. Four months later, he used a push mower to mow the lawn of their rural Ohio home and, at bedtime, mentioned to his parents that his back hurt. When he woke up the next day, he couldn’t move.

“He was in so much pain, from his head down to his toes,” Varno said.

The local ER and, later, his pediatrician chalked it up to growing pains. But the boy who jumped on a trampoline every day, who loved to run and play football, could barely walk or move.

"Growing pains" is not a term that my orthopaedic colleagues would ever utter.

In addition to complex pediatric long Covid, Ayden had been diagnosed with orthostatic intolerance, an inability to remain upright without symptoms like lightheadedness, and dysautonomia, a dysfunction of the nerves that regulate involuntary body functions like heart rate and blood pressure.

Edwards’ clinic uses an integrated approach to long Covid treatment. Ayden’s regimen included physical therapy, acupuncture, deep breathing and cognitive behavioral therapy, as well as diet changes.

FFS.

 

[dave30th]

pseudo-sympathy

I like this phrase.

 

[rvallee]

The local ER and, later, his pediatrician chalked it up to growing pains. But the boy who jumped on a trampoline every day, who loved to run and play football, could barely walk or move.

Wow. That has nothing to do with growing pains, which doesn't cause any of this. I've had bad growing pains in my teens. It hurt. It's growing PAINS. In the bones. The freaking bones hurt. Pain, damnit, words have meaning. This is clearly not a pain issue. WTH?

It's not even logical. Brian Hugues really nailed it that this is a crisis of validity. Those claims aren't even valid, they defy common sense and make a mockery of the idea of reasoning. But that's really the issue with most medical things: biology is not logical and does not care about reasoning. It's not like human-built things that have to follow some consistency or logic, where you can reason why something is there and does that.

It's purely associative rote memorization for the most part. There is no reasoning involved, you can't even use reasoning because evolution doesn't care about making sense. I think this is showing up to be one of the most significant problems in medicine: the absence of reasoning. You can't deduce, you can't infer, you can't reason, you can only know and remember accurately and that only works on things that are themselves valid, it cannot determine validity on its own.

There's a saying in philosophy that you can't reason someone out of a position they didn't reason themselves into. And that's becoming a major obstacle in medicine: most of what they know is not the product of reasoning, because it's not reasonable. Biology is a kludge, it's not meant to make sense. Lots of things in biology are in fact so bizarre they can't make sense, there are too many hidden details, too many small things happening in concert creating a whole.

And I guess this is the illogical outcome when you combine with no accountability and a general indifference to never delivering results.

 

[Ash]

Why is the business press outreporting the left on COVID?
Newly disabled victims of COVID pile high while the left spreads ableist nonsense
Today, the New Republic chose to publish a story about Long COVID. In this moment, as millions of people continue to be disabled by the illness, the public could use more reporting on the topic. Few people seem aware that Long COVID exists; those that are aware believe it’s rare or nothing to worry about. All of this is scientifically inaccurate, but that didn’t stop the New Republic from publishing a misleading and minimizing piece today suggesting that Long COVID may be psychological. While it pays lip service to the many studies emerging that demonstrate biological changes in patients, it then goes on to undercut its own critique of the historically misogynistic “hysteria” diagnosis by claiming “A chronic illness that appeared to be triggered by viral infection could just as easily have been triggered by the trauma of the pandemic itself.”

This is a dangerous and unsupported claim at a time where the ramifications of mass disability are becoming all too apparent, and one that has been employed in service to this administration and capital for too long.

https://thegauntlet.substack.com/p/why-is-the-business-press-outreporting

Also discussed in the "Long Covid in the media thread"
https://www.s4me.info/threads/long-covid-in-the-media-and-social-media-2022.24510/page-58

“But leftists are supposed to be critical of establishment politics and politicians. We are supposed to challenge the narratives sold to us by the Joe Bidens and Donald Trumps, the Fox Newses and CNNs of the world. We are supposed to stand with marginalized groups- disabled people, the elderly, children, the immunocompromised- and demand justice, even in the face of very long odds. And we certainly don’t unblinkingly accept a “new normal” which puts each of us at high risk of long-term disability.

A left that easily swallows half-cocked, unsupported justifications for mass death and disability for our own convenience and comfort is no left at all. We deserve better from our comrades, our leaders, our journalists, and our friends.”

Well quite. Thanks for sharing this @John Mac.

I am thinking back to the article that this piece responds to. NS talks of “support” “love” “housing” and financial security. Yet promoted the exact model that has been used to deny people access to all of these and more. Uncritically presents the very well known proponents of this model leaders in the field. Leaders whose views are therefore very well documented. Views that do not support any of these essential “supports” for disabled people. Since people should simply think or exercise themselves out of a disability status, none of this “support” to physically stay alive or enjoy psychological peace is advocated by proponents of her preferred model. And if they were in theory supportive of daily living and community supports we would have to conclude that somehow or other it seems this model is failing to bring about such support in actual practice.

I would therefore read the original article as trolling. Yes it’s primary aim is propaganda. But this could easily have been achieved without all of the direct scorn. Yes she would have needed to discredit all those with a belief in medicine, but she wouldn’t have needed to be so superficially biased in reporting she could have taken a subtle approach and been equally if not more persuasive.


I note that this journalist has a problem with misogyny that even in our imbalanced society is remarkable. Taking it to extremes with an attempt to rehabilitate the theory of “hysteria” at the close of 2022.

 

[Jaybee00]

 

[Andy]

The New Republic Has Long Covid All Wrong

"On January 9th, over 200 journalists, researchers, physicians, and people living with Long Covid, Myalgic Encephalomyelitis (ME/CFS), and other infection-associated illnesses sent the following letter to the progressive publication, The New Republic, demanding extensive corrections and an apology for the misinformation spread by columnist Natalie Shure."

https://publicherald.org/the-new-republic-has-long-covid-all-wrong/

 

[NelliePledge]

Great to see the solidarity

 

[rvallee]

Good stuff. Solid.

I can't not notice this anymore, it's everywhere and excessive:

Shure positioned her argument around the idea that some of the symptoms observed in Long Covid might be FND

There is no denying that the illness begins as immunological, resulting from the infection. The psychological model asserts that, at some point, there is a change moving the symptoms away from immunology and onto psychology. This is a grand claim, it requires evidence. There is no such evidence, it's merely asserted without evidence, speculation at best, a mere belief in most cases.

In many cases there is no gap between the acute illness and the chronic illness. In some cases there is, but the continuity matters, instead it's brushed aside with the same contempt for facts as the deconditioning trope always being asserted on the basis of extended bed rest, whether it even happened or not. It's merely an excuse, not an actual fact of evidence.

Meanwhile the minimizers have one argument and one only: those symptoms can be psychological. Can be, the lowest imaginable form of certainty and not only it isn't evidence in itself, the entire basis for this argument is circular: people have been saying this for decades, therefore people are saying it today.

That's the whole argument, on which millions of lives are neglected just in case it's real: it can be, in that it's not proven that it isn't, one of the most famous logical fallacies, Russel's teapot. Nothing real can also be justified by a logical fallacy, the very idea is absurd.

The same people saying it "can be" psychological would never accept that it "can be" immunological, that requires proof, even though since the illness begins as immunological, it should be assumed that it continues to be, unless there is compelling evidence otherwise.

You can even see the same argument from the same people when they disagree with the conclusion: you can't just say it "can be", they'll actually say the very thing they dismiss at other times. They all know it's not a valid argument, and this is the only exception of its kind. There is no other idea or concept used by professionals today that simply rests on there flimsy basis of "you can't prove it's not this long-held traditional belief we have no evidence for but believe anyway", it's the only exception of its kind, everyone understands it's not a valid argument, but the medical profession, and the public as a consequence, is OK with BSing about what they think is BS illness, even relying on BS evidence to justify it, which frankly the whole thing criminal negligence.

That really will be the horrible takeaway when the lights turn on and people see the full extent of what was done: it was ridiculously invalid and everyone had the ability to understand it, they just exempted us from any of the rules, rights and principles that make medicine work.

 

[RedFox]

They hit it out of the park with their rebuttal.

 

[Jaybee00]

 

[Three Chord Monty]

Ugh.



I'd excerpt something but I'm not sure what to choose. tl;dr "I'm not wrong about anything."

Oh, okay. This:

"Ultimately, I wrote this piece because I think the role played by psychosocial factors in illness is immense and misunderstood. It is difficult to treat, medicine has often failed these patients, and a magic bullet is unlikely to come any time soon. The most promising pathway toward reducing suffering is political: through material redistribution, universal healthcare, public health, social and disability support, guaranteed housing and education, and other robust public goods."​

 

[Trish]

That sounds like she's confusing

psychosocial factors as causes of LC, ME/CFS etc - which is not true,

with

psychosocial factors such as gaslighting and lack of appropriate support as external factors imposed by society that need to be fixed politically in order for is to get appropriate care and support.

 

[Peter T]

That sounds like she's confusing

psychosocial factors as causes of LC, ME/CFS etc - which is not true,

with

psychosocial factors such as gaslighting and lack of appropriate support as external factors imposed by society that need to be fixed politically in order for is to get appropriate care and support.

I think she is also swallowing the BPS cultists guff about them looking at the whole person and their environment, including political and economic aspects.

What she has failed to grasp is that what the BPS cultist are selling is completely the reverse of a holistic approach, they are ignoring anything biological or social and imposing an unevidenced belief that an arbitrary group of conditions/symptoms are psychogenic and despite much contrary evidence that they can be treated by CBT and exercise.

For the BPS cultists, there is no B, no S and a very idiosyncratic narrow interpretation of the P.

 

[Peter T]

For the BPS cultists, there is no B, no S and a very idiosyncratic narrow interpretation of the P.

Though there is a lot of BS and even more taking the P.

 

[RedFox]

I don’t think Long Covid advocates intend to stigmatize illness driven by psychosocial distress, but I do think some commentators (both with and without Long Covid) do so nonetheless — phrases like “dismissed as psychological” imply a hierarchy of validity that I reject.

That crap again. I don't have a problem with mental conditions. I'm living with autism, PTSD, binge eating disorder, and probably some degree of OCD. ME also causes me cognitive impairment.

I have a problem when a medical condition that has nothing to do with my thoughts is blamed on my thoughts. The problem isn't the concept of a psychosocial etiology, it's that you're wrong about the etiology. I am insulted when someone claims that exercising more will cure my ME, but I'd also be insulted if someone claimed without evidence that changing my diet would cure my mental health problems.

 

[SNT Gatchaman]

My critics insist that FND is limited to motor symptoms or non-epileptic seizures, that isn’t the case — symptoms also include extreme fatigue, chronic pain, brain fog, and more. And while Long Covid is a massive and heterogenous category that encapsulates many different things, FND is very likely one of them. Several clinicians in my piece reported seeing FND among Long Covid patients, including some with the FND subvariant functional cognitive disorder (which is often misdiagnosed as dementia and could explain some cases of severe “brain fog.”). Another physician who runs a pediatric Long Covid clinic told CNN that 13% of their first influx of patients presented with FND. Case studies positing FND as an explanation for post-COVID sequelae have been published across the world.

That links to —

Dr. Amy Edwards, associate medical director of pediatric infection control at UH Rainbow Babies & Children’s, manages the hospital’s long Covid clinic and says she has been booked solid since she started seeing children with the condition in early 2021.

“We just started seeing patients, and it slowly spread like wildfire,” Edwards said.

“Looking at our first 60 patients that came to our clinic, we found that about 13% of our patients had these functional neurologic deficits.”

These are conditions in which it appears the nervous system isn’t working the way it should, but doctors can’t figure out why.

“In the case of our kids, it most always presents with loss of limb function, an inability to walk or move an arm, something like that,” Edwards said. “When you’re talking about 60 kids, 13% is a big number, especially when you’re talking about loss of limb function that has to be regained with physical therapy. It’s not a rare 1% complication.”

That sounds just a little high compared with the said-to-be very rare FND that has definitive rule-in signs that make the diagnosis certain.

 

[SNT Gatchaman]

I don’t think Long Covid advocates intend to stigmatize illness driven by psychosocial distress, but I do think some commentators (both with and without Long Covid) do so nonetheless — phrases like “dismissed as psychological” imply a hierarchy of validity that I reject.

No there is no such implication - that is your interpretation and you're projecting. "Dismissed as psychological" means dismissed by being incorrectly defined as psychological. The term carries absolutely no judgement on "illness aetiology merit" or some hierarchy of validity.