State of Mind: Is Long COVID Linked to Mental Illness?

[Trish]

She wrote: "Pieces by mainstream journalists have suggested that linking depression and long COVID is tantamount to accusing all long COVID sufferers of being malingerers."

She references articles by David Tuller and Ed Young which do not really say this. They interviewed patients who have been the victim of people who misinterpret studies that link depression/anxiety to Long Covid as proving the condition is psychosomatic (mainly caused by stress or worry) or less severe.

It is a rather unfair mischaracterization of what they wrote.

@dave30th has responded on Twitter in a series of 5 tweets:

Copy of tweets

Hi,
@grace_huckins
. I'd be happy to meet for coffee in the Bay Area and discuss these issues. For the record, my story in Coda did not suggest that "linking depression and long COVID is tantamount to accusing all long COVID sufferers of being malingerers.1/

The clinicians I spoke with were not told their long covid as "linked to" depression. They were told categorically that their symptoms were "caused" by anxiety/depression and that NOTHING ELSE WAS WRONG. 2/

That is the point. No one can reasonably dispute that there is a linkage between emotional/psychological states and physical symptoms. I certainly did not claim they were unrelated. The issue is being told that there is nothing pathophysiological wrong at all 3/

And that ALL symptoms are solely the result of anxiety/depression/PTSD or whatever. There can be no dispute that these are linked or associated. So I believe your piece misinterpreted what I wrote. The issue is unproven claims of causation--not of association.

I have a few other concerns I will outline later. I truly appreciate how challenging and difficult it can be for journalists to take on such complex topics. As a long-time journalist (I'm 66) and public health guy at UC Berkeley, I'd be happy to meet and discuss, as indicated.

 

[bobbler]

Staggering arrogance.

True, but I suspect there is also dissociation happenning here: she is so fixated on retorts to defend what she has said that she isn't capable of stepping back to see why on earth she is saying it in the first place. Like someone who causes havoc in order to 'get x' without stopping to think whether they actually either want or need it - and I've observed a scary number of people who get caught in that issue/habit these days. And luckily it is something that CBT would be a good model, if it were of the type that is properly scientifically done, to address such issues in such people. 'step back before you kneejerk and go into defend or fight and think* "what is it that I'm defending" '.

So naivity and having been hoodwinked. I'm almost at the point of feeling for words like 'patsy' or 'gopher' to take it to the new generation who aren't aware it is just an old-fashioned excuse from dated people who did a dated paradigm that never worked and ergo 'it seems like it makes sense to those in today's world/isn't old and dated thinking being pushed forward in a manifesto written by a dated niche'.

I see all of this nonsense 'paradigm' [it isn't, it is a fake truism charading, and most importantly is about as maximum non-committal to specifics or anything falsifiable as a statement as you get] as something that basically came from the PACE lot (and of course those who've jumped into the industry because they like 'motivating people' and don't want a 'pander and support' job) flunking and ducking the 'come to Jesus moment'.

That's what it is all about: embarrassing denial and inability to take it on the chin of the generation before her - which in previous academic decades would have been what the youngsters coming through would have seen as their fodder to overturn, improve on and set right. You normally go into a subject with fresh eyes to see where you can 'add' and be objective rather than to join the religion so to speak, unless it is a profession.

It is classic rewrite history and trying to backtrack on your own flawed model: 'but you have to admit that some psychological something can sort of be part of anything sort of' in response to their whole idea - which was that the illness could be CURED by things like pushing people in a swimming pool to convince them they could actually move, as well as being pushed to hurt your body 'because we won't hear that you still did exercise and used it, it must be because you deconditioned by doing less' fell into as a fallacy and delusion.

And if you are an academic with the access to get manifestos and articles published and do your business by rhetoric against straw men then you churn out a load of papers that are based on even less method than the ones before even feigned. But they were just covers, just misogynisty type people writing back-covering claiming 'it was only ever really rehab' and 'we just meant x' to try and pretend they weren't really wrong.

And this woman has obviously come into the subject at a point where that is her teachers - people who are required to give up to date learning but were a major part of delivering that several decade wrong paradigm and don't have it in them to eat their words. And how do you cover how non-science and manifesto-based it is other than taking out the methods part of the subject or teaching dodgy versions based on inference and just making your 'evidence' a load of one-liner retorts that aren't meaningful at all? So sadly that is probably what she has learned and thinks the subject is. And people 'model' on those who go before them unless they are real ground-breakers who question what they are being taught.

So it's pretty worrying for the future of certain subjects to see people like this, hopefully it is just a twitter-attracted-type thing. I'm not a fan of it because you have to be pretty happy to groundhog day a very simplisic and limited argument for however long on end for stuff like this, and I don't get how that's worthy anyone's time other than if you are seeking huge amounts of very shallow validation from likes and yeps.

What happened to teachers who wanted to prep their followers to be better than them and in critical evaluation, rather than to just train a generation of adherents learned by rote not to disagree. It feels like an indicator of a real flaw with the subject when it shows deficiency in the skills and approach/attitude the next generation are being taught to have.


There used to be different skills in the progress through academic stages where people have to first be able to understand the literature, then seek the different viewpoints to understand the complexities and debates, then understand the methodologies so you actually understand which ones are 'moot/not really debates', then be able to criticially evaluate.

By that point (around end of UG and into masters) you should be critically evaluative on methods specifically before you even begin an essay where you will be arguing that perspective (based on it).

Often then into later academics as you become allied to certain areas and schools then you might be arguing first more.

But aping that without doing the homework/main work part first seems to be an increasing problem. It is great to be able to have the skills of arguing and debating in an academic forum, but if it isn't based on that initial knowledge and seeking to further knowledge then it is 'just arguing for the sake of it' or 'pushing a manifesto'? Well it is skipping the real meaning of debate, which is supposed to be in your own mind first having read the literature etc. not about joining 'a team' early on then defending for the sake of it.

 

[Hoopoe]

some psychological something can sort of be part of anything sort of

This is so common in these articles.

They want to say it's psychosomatic, encounter criticism, then redefine their own position into some vague statement about psychological factors that's hard to disagree with even if one has to guess what is actually meant. Obviously sick people do experience negative emotions about being ill but that wasn't the original claim. And if someone believes this is what psychosomatics, FND or the CBT used in ME are meant to address then they're misinformed.

 

[Hoopoe]

Rereading the article I get the impression that the author is trying to say something about the importance of mental health while not having a good understanding of things, and bizarrely picking the worst possible illnesses to use as background for this.

 

[rvallee]

This is so common in these articles.

They want to say it's psychosomatic, encounter criticism, then redefine their own position into some vague statement about psychological factors that's hard to disagree with even if one has to guess what is actually meant. Obviously sick people do experience negative emotions about being ill but that wasn't the original claim. And if someone believes this is what psychosomatics, FND or the CBT used in ME are meant to address then they're misinformed.

It's the exact same argument for astrology. Stars and planets absolutely influence life on earth. Not as claimed, not individual lives, but they do. No one can dispute that, especially the Sun. Doesn't make astrology real anymore than the same argument makes psychosomatics real. It's the worst argument anyone can put together: it can happen, you can't prove it's not, therefore it always is. It's genuinely one of the most insane things in the world that millions of lives, and billions of life years, are sacrificed to something this mediocre.

 

[dave30th]

Does someone know how to unroll my twitter thread into a block of text? That way I could post on FB or VB. thanks!

 

[Andy]

Copy and paste of text from this thread unroll, https://threadreaderapp.com/thread/1675071769479094273.html. Does not include the links that you posted in some tweets.

The recent article in @Slate by @grace_huckins attracted a lot of attention. The article highlighted the self-evident links between mood/psychological states and somatic symptoms. No argument there--no one seriously disputes the links. 1/

But the article relies heavily on the construct of functional neurological disorder without noting how FND experts have misrepresented their own field for more than a decade, as I have recently reported.2/

The top experts in the field have routinely disseminated false information about prevalence from a seminal study in their field, insisting that it showed that 16% of neurology outpatients had FND and that it was the #2 diagnosis. This claim is nonsense.3/

The 2010 study, Stone et al, found that 5.5% had conversion disorder, now known as FND--not 16%. At that lower rate, it was the 8th-most-common diagnosis, not #2. This is indisputable, as evidenced by the forthcoming correction in a major journal. 4/

This correction will necessitate further corrections in literally dozens of papers. The #2 diagnosis claim has become a meme--even though the paper cited showed no such thing. The others included had "functional" disorders but no evidence of the specific Dx of FND.5/

As the Slate article notes, an FND Dx requires the presence of positive findings on clinical "rule-in" signs--it is purportedly a positive diagnosis, while so-called "functional" disorders are considered diagnoses of exclusion. 6/

The Slate article notes that "there are specific clues that doctors can use to identify FND." A major problem is that the studies about these clues--the "rule-in" signs--do not tell us very much, as I recently documented about Hoover's sign 7/

Hoover's sign is the "poster-sign" for FND, first described a century ago as a way to identify hysterical leg weakness/paralysis from the "organic" version. It is routinely claimed that it is 100% specific, or close to. But the main study finding tells us very little about FND.8/

In this decade-old study, the authors found Hoover's sign in less than 20 patients previously diagnosed with FND (or conversion disorder) and didn't find it in the comparison group. So why doesn't this mean it is 100% specific in identifying FND? 9/

Because all the FND patients had a positive Hoover's sign as part of their diagnostic work-up in the first place--in other words, it was part of why they were given the Dx. So it is not surprising that they would have a second positive Hoover's sign. /10

In other words, the study proved that one positive Hoover's sign predicts another--nothing more. The authors noted the circularity of the argument as a limitation. But it is more than a minor limitation--it renders meaningless the purported specificity of Hoover's for FND. 11/

The authors themselves called for more studies of Hoover's sign, including of inter-rater reliability studies. But neither they nor others have conducted these further studies. So we are left with proof that a positive Hoover's sign predicts another positive Hoover's sign. 12/

It is known that other conditions with known pathophysiological processes can lead to positive Hoover's signs. And yet based on this meager set of data, it is also said to be close to 100% specific for FND. And Hoover's is the most studied of the signs. 13/

It is hard to take at face value the claims of experts who have spent a decade misrepresenting key data from their field of expertise and over-hyping the "high specificity" of clinical signs studied in papers with circular study designs.14/

A 2021 paper on these signs included this statement: "“There is a need to further test the specificity, sensitivities and inter-rater reliability of the growing range of positive functional signs compared to other neurological populations...15/

...particularly given that statistical properties for some signs have been only tested in a single cohort.” In fact, almost all of the signs identified to test motor FND have been tested in only a single cohort. (My above-linked blog post contains all links and references). 16/

A 2022 paper included a table of 41 “validated positive motor signs” used to rule in the motor FND diagnoses 34 of these–or 83%–were shown as tested in only a single cohort. Five were tested in two studies, and only two signs were tested in more than two.17/

It is self-evident that mood states/depression/anxiety impact the body in incredibly complicated ways. No one seriously disputes that these can cause and exacerbate a range of conditions. No one can seriously dispute that psychotherapy can be helpful in a great many ways. 18/

But the CBT promoters in the long Covid field, like the senior author of the study cited favorably in Slate, are not honest brokers, just like the CBT promoters for ME/CFS are not honest brokers. A close looks at the Dutch study for CBT for long covid makes that clear. 19/

That study--like almost every CBT study in this domain of illnesses with non-specific symptoms like ME/CFS--relied for its claims of success solely on subjective outcomes. In an unblinded study, relying on subjective outcomes is a recipe for an enormous amout of bias. 20/

It is self-evident, or should be, that patients who receive loving attention from a therapist for months are more likely to respond more positively on questionnaires than patients who received nothing. Hello!! Can anybody seriously argue the opposite? 21/

Anyone who receives a course of CBT from a compassionate person is likely to report some benefit, whether they have an illness or not. To argue from this that modest reported benefits demonstrate the efficacy of the treatment requires a problematic suspension of skepticism.22/

Beyond that, the senior author has a history of hiding null or poor results on a key objective measure of movement--actigraphy readings from a device worn for days or a week by participants. I reported on this in a recent blog.23/

Three major Dutch studies of psycho-behavioral interventions for ME/CFS all had positive subjective findings but null objective actigraphy findings. And all the papers were published without the objective findings and touted as proof the treatments worked.24/

Only years later did these authors, including Knoop, publish their null objective results. But of course by then no one cared or paid attention. In the recent LC study of CBT, the protocol indicated that actigraphy would be done at baseline and three months. 25/

So where are these data? The published report doesn't mention them. I think it's fair to assume that if they supported the subjective results, the authors would have included them. Their absence suggests that, like in past CBT studies, they contradict the subjective outcomes. 26/

There are other issues with this study, as noted in a recently published response to it. Citing this as serious evidence that CBT works for long covid is really unwarranted.

The Slate article criticized an article I wrote about clinicians with long Covid. In that article, I mentioned that this Dutch CBT study was underway and criticized it. The point is not that I reject all research into the links between long covid and depression/anxiety/etc. 28/

The linkages are obviously there, depression and anxiety and constant stress response are obviously harmful to physiological processes. But I strenuously object to researchers who have a history of problematic reporting of their results. 29/

That includes investigators who have spent a decade misrepresenting a seminal study in their field of research, who over-hype the specificity and discriminatory value of clinical signs, and who hide salient objective results from their own studies. 30/

This means I also tend to have objections to journalism articles that rely on these claims. The Slate article seems to me much more nuanced in the end from related articles in New York and The New Republic. The journalist appears more open to dialogue. 31/

I continue to be open to having that dialogue with her, and with other journalists engaged in these issues. Certainly I hope in future those tackling this issue take a sharper look at some of the studies they are citing and the robust critiques of those studies. 32/

That's all for now on this. I might have more thoughts on it later.

@joan_crawford1 @Slate @grace_huckins Hiding salient data that would undermine your claims seems to be one of Knoop's favorite strategies in reporting his work. It's not clear to me why this does not seem to bother any of the journals publishing his work. Or to the journalists reporting favorably on it.

Oh, one more point--the Slate author makes it clear that association is not causation, that investigations into biomedical causes are critical, etc. In many ways, it is a nuanced piece. But the piece overlooks that the approach of the CBT experts in this domain is different. 32/

In general, their argument has been that these anxiety/depression are the sole causes of all the non-specific symptoms. Patients are not told generally they have associated depresion/anxiety but that those are THE causal factors. That's the issue.

 

[dave30th]

Wow, thanks!

 

[Andy]

Dave Tuller on Twitter has tweeted
"This article is highly problematic, as I noted when it was published. The author argues FND is like a brain "software" issue and that I have misinterpreted the science. Our comment in @statnews serves as a rebuttal."

https://twitter.com/user/status/1813872483516461404

Dave et al article,
Functional neurological disorder is not an appropriate diagnosis for people with long Covid

"Long Covid — the name adopted for cases of prolonged symptoms after an acute bout of Covid-19 — is an umbrella diagnosis covering a broad range of clinical presentations and abnormal biological processes. Researchers haven’t yet identified a single or defining cause for some of the most debilitating symptoms associated with long Covid, which parallel those routinely seen in other post-acute infection syndromes. These include overwhelming fatigue, post-exertional malaise, cognitive deficits (often referred to as brain fog), and extreme dizziness.

Given the current gaps in knowledge, some neurologists, psychiatrists, and other clinicians in the United States, United Kingdom, and elsewhere have suggested that an existing diagnosis known as functional neurological disorder (FND) could offer the best explanation for many cases of this devastating illness."

https://www.statnews.com/2024/07/15/long-covid-not-functional-neurological-disorder/

 

[Ash]

Dave Tuller on Twitter has tweeted
"This article is highly problematic, as I noted when it was published. The author argues FND is like a brain "software" issue and that I have misinterpreted the science. Our comment in @statnews serves as a rebuttal."



Dave et al article,
Functional neurological disorder is not an appropriate diagnosis for people with long Covid

"Long Covid — the name adopted for cases of prolonged symptoms after an acute bout of Covid-19 — is an umbrella diagnosis covering a broad range of clinical presentations and abnormal biological processes. Researchers haven’t yet identified a single or defining cause for some of the most debilitating symptoms associated with long Covid, which parallel those routinely seen in other post-acute infection syndromes. These include overwhelming fatigue, post-exertional malaise, cognitive deficits (often referred to as brain fog), and extreme dizziness.

Given the current gaps in knowledge, some neurologists, psychiatrists, and other clinicians in the United States, United Kingdom, and elsewhere have suggested that an existing diagnosis known as functional neurological disorder (FND) could offer the best explanation for many cases of this devastating illness."

https://www.statnews.com/2024/07/15/long-covid-not-functional-neurological-disorder/

Good.