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

Thank you. Signed.

 

I think that this letter takes too simplistic an approach. I worry it's more likely to irritate the editors than persuade them.

 

Actually, it looks better than I thought when I skimmed through last night.

There were editing notes up, and a move to have criticism of PACE strengthened and simplified, and I thought that was a mistake, especially given the importance of it to Shure's narrative.

To me, it still feels as if the stuff on PACE lacked the details needed and instead just asserted that is was 'discredited'. What authoritative source said PACE was 'discredited'? I'm certainly not saying that we should rely on the judgements of supposedly authoritative sources, but an editor who doesn't have time to understand the issue is likely to want to.

 

Yes. For the first talk of 'discredited' they linked to the PACE recovery paper from Wilshire but that's only part of PACE, and part of the problems with PACE. I think that I'd have wanted to avoid such a broad claim. I think it would have been better to include some more details, and a less broad assertion.

 

Shure and Gaffney are engaging in incredibly condescending and outright repellant responses to calls for retraction. I felt that this tweet was especially gross. I also see that Gaffney posted an article where Sharpe discusses the harassment he faces from feral activists

 

My impression of the letter a few days ago was that it needed improvement, and in particular some feedback on people who are familiar with the PACE trial and the issue of the reliability of research.

But it was not bad, and seemed like a good idea.

 

https://twitter.com/user/status/1612128747658022913

 

So, this happened. Not gonna link, just a video interview with the author rehashing the usual tropes. The language is clearly offensive on purpose. The Hill used to be somewhat neutral but was bought a few years back and has been a right-wing publication since, showing how with the medical professional AWOL, medical issues simply get politicized.

For some reason, Lorenz has been a target of the alt-right and the, uh, weird Spiked/Quillette end of horseshoe leftists like Shure and Gaffney, so this is more about that than substance.

 

Here's the youtube auto-transcript of that video interview with Shure:

 

Here's a good transcription. The video is bad to the point most people will find it somewhat offensive.

The video in question:
Taylor Lorenz, Critics HYSTERIC Over Long Covid Psychosomatic Possibility: Robby & Batya

https://www.youtube.com/watch?v=FTOPq0WKT5A

(I'm not opposed to link things I disagree with. In order to criticize, we must engage with our sources)

Batya Ungar-Sargon: Columnist at the New Republic Natalie Shure has recently reported on symptoms of long Covid. Last month, she published and article saying that we might have gotten long Covid all wrong.
Man: She poses the following: Some post-Covid symptoms may be produced by the brain, but does that make them any less real? Columnist at The New Republic Natalie Shure joins us now to discuss her article. Welcome, Natalie.
Natalie Shure: Thank you so much for having me.
Robby: Yeah, I read the article and I really enjoyed it. It's very thorough, very long, very nuanced, very well-reported and it was getting a lot of blowback (I saw) from people on social media who are very "all about" long Covid and how debilitating it is, etc. But you don't...you're not arguing...and I wanna give you a minute her to kind of summarize what your findings are and what your thesis is. But you're not saying long Covid doesn't exist, but you're saying that the way we're talking about it isn't quite matching the reality of what data is revealing. So, why don't you explain that at greater lenght?
Natalie Shure: Sure. I think that there are a whole lot of people who are very debilitated and very ill. And that's and awful thing and my heart goes out to people who are experiencing these symptoms. I think that long Covid is a phrase that describes a lot of different things that are probably different disease processes at play. Some of them are just lasting symptoms from severe illness. We know that that is the case, that is something that happens. I think that other symptoms are, in all likelihood, driven by psychosocial distress. Which isn't a patient's choice, which isn't something they're doing on purpose. It's actually one of the hardest problems in medicine to solve. We know this from other illnesses that are largely driven by psychosocial distress: Things like depression, things like addiction. I think that there are better models for looking at what's going on and look at what might be the best way to treat these patients.
Batya Ungar-Sargon: Yeah, in your article, you do such a great job of discussing this in terms of (sort of) hardware vs. software problems. And I was thinking a lot about fibromyalgia, for example. Which is kind of, one of the software problems where somebody is experiencing true distress, but it is...more manifesting in the brain and (like you say) psychosocial distress. So walk us through what the difference would be in terms of a medical and a public policy approach to responding to something if it is psychosocial (software) rather than physical (let's say somatic) hardware.
Natalie Shure: Sure. So the software/hardware analogy is something that people who study functional disorders really use to try to explain it. Functional disorders--I opened my piece with a woman who had something called functional neurological disorder. For a long time, this woman couldn't walk. She was incredibly debilitated. She at one point lived in a nursing home believing that she was going to die, before she got diagnosed with functional neurological disorder from a supportive clinician, and was able to (with the help of different rehabilitative exercises) to basically become somewhat better. I think that something that's driven by psychosocial distress means that perhaps the best way (or the best shot that they have) of getting better (and this is very difficult even with best-case scenario) is adjusting some of the context of their life. And that's why one of the things that I really end with is that reducing the amount of suffering in the world through redistribution, through universal healthcare, things of that nature, is probably going to do the most to reduce suffering on a broad scale.
Robby: Right, and the reason what you're saying and you're describing here doesn't really sound controversial at all. But there is a community of people really pushing to get angry when you say things like that because they're saying, "No, this is lingering complications of the actual respiratory disease, of the actual conditions, causing brain frog--uh--brain fog and pain, and anxiety and being tired all the time" and you're not saying if you're experiencing those things. If your brain is telling you to experience those things, it is real because we don't experience anything outside our brain. But if you look at the evidence and you look at the data, it's much harder to draw a direct correlation between (necessarily) the disease component of the disease itself, given that I know that some of the people who say they're suffering from long Covid (at least early on in the pandemic, now virtually everyone's had it), at least early on, then they looked and those people never actually had Covid. Which makes you say, "So it has to be--there has to be a component of it at least that could be, the trauma of what we've all gone through, of watching loved ones die, losing a job or economic stresses, all those things." Again, not saying it's not real, but it's just not the way a lot of the (kind of) long Covid zealous people are describing it.
Natalie Shure: I think that that's true. I think, overall, what you're saying is mostly correct and it means that there is unlikely to be a biopharmaceutical cure for long Covid. (Man: Mm-hmm) There's never going to be something that looks like penecillin for brain fog. This is a symptom that's incredibly debilitating. It affects a lot of people: not just in long Covid, in other illnesses too, including illnesses--things like cancer. People have debilitating brain fog and medicine has struggled to solve these problems. We do have a few tools but I just don't think they're going to come from the pharmaceutical industry.
Robby: And we have examples. Take Havana Syndrome. I think we interviewed you about that on the show. Which is not saying people's pain is not real. People are experiencing something in their brain that is distressing them but we can't find any evidence for any of the claims about it. You know, sionic weapon [sic] or whatever it was that could be causing it. There's no evidence of any of that. Not saying it's not real, it's just not described by a literal thing.
Natalie Shure: Yeah, I think that Havana Syndrome showed us that it's very easy to understand how someone could ascribe very real suffering to something that's not the proximal cause of that suffering. I think that in the case of Havana Syndrome it was a lot more serious of a problem. I think that their narrative: that there was a hostile foreign actor chasing Americans around the world and shooting them with ray guns. I think that nipping that narrative and being very emphatic about why that narrative is wrong is more important. It's more damaging. But I think that the way the long Covid narrative is emerging is empowering quacks. Is maybe stopping people from getting better and turning people away from solutions, especially on a broader level. So I think that the narratives are doing different things, but I do think that they are similar in the respect that these are sick people, these are people who are ill. And I think that they're no grasping a story that best explains why that is.
Robby: Well, on that front, last week, Washington Post technology columnist Taylor Lorenz: "The eugenic undertone surrounding Covid policy has really shocked me. It has challenged my views as us as a soceity. Public health policy is now based on survival of the fittest. Those who don't make it are dismissed as dry kindling. I really thought we were better than that". And I saw along a similar vein, calls for your article to be retracted or corrected or something. You know, this is coming from people who describe in their Twitter bios that they're long Covid sufferers. It's becoming an aspect of one's personality for some people in a way that does not seem healthy to me frankly. It's almost like doubling down on this being a permanent condition of the disease that would just reinforce it.
Natalie Shure: Yeah, I mean, I can't blame anyone on an individual level for what they're grasping for. Again, these are people who are suffering severely who in a lot of cases don't have a lot of power and I think they're finding solace in this identity. But I do think, in general, (accusations of eugenics aside) I do think that building a better society, having more social support for people to be able to take time off, to be able to recover from whatever illness that they do have, would make society look a lot better and I do wish that there were more distributive policies (more social programs) that would come out of this pandemic. And that I would rather be talking about those than some of the minutae that are advanced by these camps.
Batya Ungar-Sargon: Real quick: Before we wrap, Natalie, is there any data about who gets long Covid? Are women more prone to it? Are certain kinds of people? Do we have any data about who is primarily being afflicted by this or is it evenly distributed?
Natalie Shure: Well, so that's a difficult question to answer for a few reasons. For one thing, a lot of the data that we do have is about anyone who has lingering symptoms (let's say) 12 weeks after their initial infection. And that's going to include some of the people with this classic type of long Covid that has been centered in the media narrative. People with post-exertional malaise and fatigue and brain fog. That will include people like that but it will also include someone who was on a ventilator for 5 weeks and is now having some difficulty breathing afterwards. So those are typically different types of patients. There's not a lot of commonality between them. I think, for the most part, especially when you get to more than 12 weeks out, when you have the more prolonged illness that is marked by fatigue and brain fog, it tends to be more women than men and it's hard to say where they're getting the research cohort. I think that we have a lot of research in general that shows us that poor people, people who suffer oppression, people who have more difficult lives/more difficult jobs certainly have more chronic pain, chronic fatigue. And they might not necessarily identify as being long Covid or ME/CFS patients. So, it's murky, but in general, I think that oppression and poverty drives illness and that rates are higher among those people.
Robby: Fascinating stuff. Natalie, thank you so much for joining us. We really appreciate it.
Natalie Shure: Thank you so much for having me.
Robby: We'll have more Rising right after this. Stay tuned.

 

The argument Shure offers here is very old: Long Covid is just a manifestation of psychosocial distress. In the video, she never bothers to provide any evidence for this, besides mentioning that terrible study ("Association of Self-reported COVID-19 Infection and SARS-CoV-2 Serology Test Results..." Paper, S4ME thread), and the testimony of one person with FND. This fact-checking article concludes that the study didn't really measure whether people had Covid or prove it's psychosomatic.

She uses the hardware-software analogy popular among people who don't understand computers. (The body doesn't have software/hardware abstractions. Even in real computers, the distinction between the two is complex. Firmware? Microcode? Peripherals anyone?)

Frankly, the entire concept that distress causes illness seems rather...wimpy. The debate isn't about whether it's true, it's about how. Psychosocial distress certainly leads to worse health outcomes--mental conditions, addiction, overeating, etc. The problem with BPS is that they claim that distress turns into illness in a specific way: Deconditioning, anxiety, fear, and not knowing how to use your own body (!), without "really" affecting your body. They've never found strong evidence for this hypothesis. It's hard to prove, but basically impossible to disprove, because no matter that physiological abnormality you find, someone will try to find a "junction" between intangible thoughts and tangible molecules. Ron Davis could do a study validating the nanoneedle in 1000 people tomorrow, and hardcore BPS people might still claim "deconditioning" or whatever.

I'm glad she claims that there will never be a medication for LC. It's one of the few falsifiable claims she makes. If we find a drug, boom, that's it, she's wrong. There's something we can target that's not emotional distress.

We already know enough about LC to put any claims of anxiety creating symptoms out of thin air to rest. Dr. Pretorius has multiple papers on microclots. Multiple studies have found messed-up immune markers. We know there's autonomic dysfunction and abnormal exercise tests. There's enough to prove something's wrong. Let's do studies to gain enough knowledge to develop medicines.

 

Personally I think using the word "distress" is insulting. It is almost always used in connection with women and it implies that women are weak, wimpy, emotional and just not cut out for anything except housework. They certainly aren't cut out to do real work, like men. (That was sarcasm, just in case it isn't obvious.)

 

There should be laws against gaslighting.

At the very least, there should be a slew of required ethics courses in medical school which explain in screeching detail the harm levied by those who gaslight. These courses should be mandatory for any psych wannabees - much in the same way courses that emphasize pedophilia is anathema should be taught in seminaries to those seeking to pursue the cloth.

And while we're speaking to this, "they" need to shove the condescension up their arses. The whole schtick about people being debilitated but not REALLY sick with a disease, but still those poor souls believe they feel terrible, and our hearts reach out to them, leaves me as deaf to medicine as if a troop of banshees screaming insincerities had ruptured my ear drums.

 

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). Showalter ignored all biomedical studies, used sneering language, ridiculed the patients, was scornful and dismissive of medical doctors who accepted the disease as biomedical. The only doctor Showalter interviewed re ME was Wessely. She did not give references apart from popular magazines and journals -

Showalter emphasised that the people with ME (CFS) ARE ILL, but not ill with the medical disease they believe they have. Journalists insisted that Showalter was "brave" to take on the ME population, and that she was "compassionate" towards the patients, she compassionately told them they suffered from a psychosomatic/social contagion illness that needed understanding and treatment. Yes, as Trish stated, "pseudo sympathy".

Wessely and Showalter differed on what they thought the treatment should be. Wessely advised CBT/GET and Showalter favoured Freudian analysis though I can't remember if she explicitly recommended that for ME or GWS sufferers.

 

And therapists should be making their money off of the perpetrators instead of their victims. It’s backwards, which in itself is a kind of perpetration.

 

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!

 

In 2020 Showalter contributed a chapter to an anthology called

'Performing Hysteria: Images and Imaginations of Hysteria'
EDITED BY JOHANNA BRAUN
https://www.jstor.org/stable/j.ctv18dvt2d.5#metadata_info_tab_contents


Showalter's chapter was called 'HYSTORIES REVISITED: Hysterical Epidemics and Social Media'
https://www.jstor.org/stable/j.ctv18dvt2d.5?seq=5#metadata_info_tab_contents
(you can read the chapter by scrolling down)


In that chapter was not one word about 'Chronic Fatigue Syndrome', despite Showalter dedicating an entire chapter to the disease in her 1997 'Hystories'. I think she didn't dare, as she would look pretty stupid now the CDC and NIH as well as the WHO and more recently NICE recognise ME as a biomedical disease. Yes, we know we still don't get the research funding etc from those orgs, but Showalter would get pushback from a significant number of medical scientists now, not just from patients as was the case in 1997, the patients being left to defend ourselves from the media frenzy that resulted from the publication of Hystories 1997. One journalist at the time (in the UK Independent I think) suggested that only person spreading hysteria through the media was Elaine herself, but most of the press eagerly repeated Showalter's stories.

Showalter instead focuses more on Gulf War Syndrome in her recent chapter, using her familiar MO - portraying those sufferers as a nasty, stupid, deluded, hysterical mob, and Showalter positioning herself as their victim, the REAL victim.