Review Long COVID – neurological or somatoform disease?, 2024, Tényi, Tényi, Janszky

Wyva

Wyva

Senior Member (Voting Rights)
Background and purpose – Post-COVID condition (also known as long COVID) is a syndrome characterized by persistent symptoms following a suspected or confirmed SARS-CoV-2 infection, lasting for at least two months and are not attributable to other conditions. The most common symptoms include fatigue, diffuse pain, post-exertional malaise and “brain fog” (impairment of memory and concentration). The pathomechanism of long COVID is the subject of ongoing, intensive research. Our purpose was to review the literature on the pathomechanism of long COVID.

Methods – We reviewed original and review articles in Hungarian and English on the pathomechanism of long COVID, published between January 2019 and June 2024, in the PubMed and Google Scholar databases.

Results – Potential underlying causes of the symptoms are outlined in three main theories. 1) The concept of “long COVID as a distinct neurological disease” suggests that direct viral neuroinvasion, apoptosis, and demyelination processes are responsible for the symptoms. 2) The theory of “long COVID as a systemic disease with neurological symptoms” is based on the virus induced, prolonged cytokine and chemokine release, as well as the reactivation of latent viral infections. 3) According to the concept of “long COVID as a somatoform disorder”, the disease results from abnormal activation of the proinflammatory cytokine network leading to central nervous system sensitization, a well-known psychoneuroimmunological mechanism.

Our study highlighted significant overlaps between long COVID and conditions such as chronic fatigue syndrome/myalgic encephalomyelitis, a group of symptoms not defined as a distinct mental disorder in DSM-5, but commonly referred to as Gulf War syndrome, chronic Lyme disease and somatic symptom disorder. Conclusion – The pathomechanism of long COVID, which presents with a wide range of nonspecific symptoms, remains unknown, and no reproducible disease-specific biomarker has been identified to date. Clarifying the etiology of the disease is crucial for determining adequate and effective therapeutic methods.

Open access (registration is necessary but free): https://elitmed.hu/kiadvanyaink/ide...covid-neurologiai-vagy-szomatizacios-betegseg

The abstract has an English version but it is otherwise a Hungarian text.
 
I have read it and it is pretty awful. A quick summary:

The first half is not so bad, it is a review of all the biomedical theories about the etiology of long covid. However, there seems to be a clear BPS bias towards psychosomatic explanations in the second part. There is a very heavy emphasis on the connection between mental problems, anxiety and depression and long covid (predisposing factors, factors that help the symptoms persist).

It speculates that the media and social media play a significant role in LC, with all the catastrophising about covid in general and also spreading the info on LC. People also suffered from social isolation etc during covid and they interpreted their symptoms as LC, which may or may not have anything to do with covid.

People interpret their symptoms online, without a physician's supervision. Even the term long covid was created in social media and the text says that Callard and Perego describe it as the first disease created by patients who found each other on Twitter. Internet and the social media influence patient organizations these days and although in the past patient orgs fought for equal treatment, patient rights, justice and equally available treatments, these days they are self-validating communities and very often their aim is to spread unscientific narratives about treatments and pathomechanisms.

The text mentions chronic Lyme and how LC is similar in that people with LC reject the "official" post-covid name in favour of the term LC and how they favour the theory of a persisting infection with no proof, similar to people with chronic Lyme.

The text also talks about "a group of doctors", who oppose "official, scientific consensus" and share their own "opinions". It references this response from these doctos, I don't know if this was discussed on S4ME: https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(20)32705-7/fulltext

At the very end they talk about the greatness of Paul Garner and his n=1 story and how it managed to draw attention to patients' success stories (and he links Recovery Norway).
 
Wyva said:
At the very end they talk about the greatness of Paul Garner and his n=1 story and how it managed to draw attention to patients' success stories (and he links Recovery Norway).
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Ugh. I find it astonishing that anyone claiming to be a scientist or clinician can take seriously the anecdote of one person who was just one among many who had a short spell of post Covid symptoms and recovered, yet dismisses the millions with serious unremitting Long Covid as social media created and therefore not real.
 
Something else I forgot to add: Janszky is the neurologist professor who gave a presentation at the LC symposium of the Hungarian Academy of Sciences and which basically was a "best of Michael Sharpe, etc". He talked about militant ME/CFS patients threatening researchers, how researchers were forced to leave the field because of this etc etc. He even emphasized the role of Judy Mikovits and how she is an anti-vaxxer conspiracy theorist. That one was pretty awful too.
 
Wyva said:
People interpret their symptoms online, without a physician's supervision. Even the term long covid was created in social media and the text says that Callard and Perego describe it as the first disease created by patients who found each other on Twitter.
Click to expand...
Maybe if the medical system actually worked and gave a damn that wouldn’t have happened like this.

What do they expect people with real diseases neglected by doctots to do, pretend they are healthy? Or do they have the naïvité to believe that medicine would always immediately discover a new clinical entity?
 
Wyva said:
According to the concept of “long COVID as a somatoform disorder”, the disease results from abnormal activation of the proinflammatory cytokine network leading to central nervous system sensitization, a well-known psychoneuroimmunological mechanism.
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Apparently they are moving the goalposts of somatoform disorder quite a bit nowadays. Somatoform disorder is hysteria. It's in the replacing name ffs, it has the "form" of physical condition but it isn't.
"The essential features of this group of disorders are physical symptoms suggesting physical disorder (hence, Somatoform) for which there are no demonstrable organic findings or known physiological mechanisms and for which there is positive evidence, or a strong presumption, that the symptoms are linked to psychological factors or conflicts.........Although the symptoms of Somatoform Disorders are "physical," the specific pathophysiological processes involved are not demonstrable or understandable by existing laboratory procedures and are conceptualized most clearly using psychological constructs. For that reason, these disorders are not classified as "physical disorders.""
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(Original DSM-III definition, where somatoform disorder made its official debut in psychiatric classification.)

Personally I'm quite done with the endless barrage of relabelling, redefining, reclassifying, rewriting etc. etc. that has been used to stuff or redirect PAIS/IACC's into a psychosomatic mold for the past decades. :rolleyes:
 
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Wyva said:
I have read it and it is pretty awful. A quick summary:

The first half is not so bad, it is a review of all the biomedical theories about the etiology of long covid. However, there seems to be a clear BPS bias towards psychosomatic explanations in the second part. There is a very heavy emphasis on the connection between mental problems, anxiety and depression and long covid (predisposing factors, factors that help the symptoms persist).

It speculates that the media and social media play a significant role in LC, with all the catastrophising about covid in general and also spreading the info on LC. People also suffered from social isolation etc during covid and they interpreted their symptoms as LC, which may or may not have anything to do with covid.

People interpret their symptoms online, without a physician's supervision. Even the term long covid was created in social media and the text says that Callard and Perego describe it as the first disease created by patients who found each other on Twitter. Internet and the social media influence patient organizations these days and although in the past patient orgs fought for equal treatment, patient rights, justice and equally available treatments, these days they are self-validating communities and very often their aim is to spread unscientific narratives about treatments and pathomechanisms.

The text mentions chronic Lyme and how LC is similar in that people with LC reject the "official" post-covid name in favour of the term LC and how they favour the theory of a persisting infection with no proof, similar to people with chronic Lyme.

The text also talks about "a group of doctors", who oppose "official, scientific consensus" and share their own "opinions". It references this response from these doctos, I don't know if this was discussed on S4ME: https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(20)32705-7/fulltext

At the very end they talk about the greatness of Paul Garner and his n=1 story and how it managed to draw attention to patients' success stories (and he links Recovery Norway).
Click to expand...

And all in Hungarian so it's not accessible for criticism by the international Long COVID researchers.

Thanks for the summary @Wyva, not fun to read or write about.
 
I'm wondering about how to address all this. I'm not sure there is a point in sending a letter to the paper, Janszky is a consulting editor there, whatever that means. (It is called Ideggyógyászati Szemle/Clinical Neuroscience and it is indexed by PubMed, Google Scholar etc.)

I'm also not sure what happens if I send the lead author a letter. They seem to be so deep into uncritical BPS thinking (with talking about Paul Garner's personal recovery story in what is supposed to be a review of the literature, with Janszky earlier talking about militant, harassing patients etc etc.), that I'm not sure there is a point. It would be like trying to convince a homeopath.

I can post a critique on my website of course, but barely anyone reads that unfortunately. Anyway, I'm just thinking right now. I'm not doing well, so currently I'm mostly thinking about how to write it, what papers to use as citations etc etc, how to go about the whole thing.
 
Wyva said:
I'm wondering about how to address all this.
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It's like trying to hold back the tide, isn't it. Trouble is, a lot of this has much more to do with politics than medicine, and that makes it harder to counter.

Some politics only works if there's someone to blame in difficult times, so they maintain a background narrative suggesting certain groups are outsiders, malingerers, undesirables. It makes it easier to persuade large numbers to turn on them when things get worse. "They're stealing our jam!", as a writer I used to know put it in a children's play about refugees escaping a war.
 
Kitty said:
It's like trying to hold back the tide, isn't it. Trouble is, a lot of this has much more to do with politics than medicine, and that makes it harder to counter.

Some politics only works if there's someone to blame in difficult times, so they maintain a background narrative suggesting certain groups are outsiders, malingerers, undesirables. It makes it easier to persuade large numbers to turn on them when things get worse. "They're stealing our jam!", as a writer I used to know put it in a children's play about refugees escaping a war.
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The political and economic elite are looking for excuses to cut budgets, and they don't give a flying fig about the human cost.

As I have been saying for years, the psychosomatic club could not have got away with their blatant perfidy without ongoing support and protection from the rest of the establishment.
 
I have never got a reply from the editor-in-chief of this journal to my letter but I have found something else. This is not related to ME/CFS but it is a letter to the editor by one of the authors of the paper in this thread, Tamás Tényi.

The paper the letter addresses is about how non-binary people are seen in medicine. I have not read the original but I have come across this response to it by Tényi. I would say I see some similarities to how he and other BPS people talk about pwME.

It is open access and I have asked ChatGPT to translate part of it:

Contrary to the currently prevailing view — which holds that in the case of transsexual/transgender men, a "female brain is trapped in a male body" — the studies of American sexologists Ray Blanchard and later Michael Bailey have shown that, in fact, something quite different is at play with transsexual/transgender men.
A portion of male transsexuals are actually gay men who, due to their excessive femininity, are not attractive to other gay men, and for them, the possibility of "becoming a woman" offers a way to establish the desired homosexual relationships.

Another group of transsexual/transgender men consists of heterosexual men whose paraphilia involves becoming sexually aroused by the fantasy of belonging to the opposite sex — that is, as the Greek term suggests, they are "sexually attracted to themselves as women."
This fantasy can range from arousal by wearing women's clothing (transvestic behavior) to being excited by the idea of existing in a female body, which can eventually lead to identifying as transsexual/transgender and seeking gender-transition procedures.

Unfortunately, these clinical findings, briefly summarized above, have met with significant resistance from activists advocating for trans rights. Bailey’s 2003 book The Man Who Would Be Queen: The Science of Gender-Bending and Transsexualism was not only met with criticism and skepticism but also led to attempts to have him removed from Northwestern University, harassment of his family, and challenges to his professional credibility.

Regrettably, many academics, researchers, and clinicians have taken the position that these important research findings regarding male transsexualism and autogynephilia should be removed from scientific and public discourse simply because they are considered undesirable by trans rights activists and transsexual/transgender individuals.

This situation is deeply troubling, as knowledge of these clinical and research findings could provide many men with an accurate diagnosis and psychiatric-psychotherapeutic support before they undergo unnecessary and dangerous gender transition procedures as a result of an unrecognized phenomenon, and suffer its subsequent hardships.

ROGD ("Rapid-Onset Gender Dysphoria")

From a clinical standpoint, it is also important to draw attention to the phenomenon that the number of people requesting gender-transition surgery increased twentyfold between 1980 and 2015, clearly indicating a kind of psychological epidemic. Behind the significant rise in those seeking treatment for gender dysphoria, other psychiatric disorders and media influences can be identified to a large extent.

Several studies have highlighted that while transgender identity (gender dysphoria) in most cases develops in early childhood or around puberty, more recent research has identified a growing number of adolescents, around the ages of 15–16, who suddenly begin to feel they are transgender, almost overnight.

According to the research, these individuals are not genuinely experiencing gender dysphoria; rather, the phenomenon can be traced back to other psychiatric disorders, dysfunctional family dynamics, conflicted relationships with parents, internet addiction, and a quasi-"infection" by online transgender content.

This phenomenon has recently been termed ROGD ("Rapid-Onset Gender Dysphoria") in the academic literature, and it is important to note that, unfortunately, clinicians and journal editors who have published these important studies have faced fierce attacks in recent years.
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Yep, the only reason that there are more people requesting gender-transition surgery is because it is psychological, not because it is becoming somewhat more accepted by society than back in those days.

Also, teenagers suddenly realizing they are transgender is false, they are actually not, they are just suffering from psychiatric disorders etc and don't know what they are talking about. And not for example because they were quiet about it because they didn't know how to address this. I mean we are talking about fragile teenagers here. But alternatively, 15-16 is still very young. Why is it so impossible to realize they are transgender at that age?

Everyone who says otherwise has an unscientific agenda and they are all wrong. The people who actually know the real truth are attacked and harassed and it is the media generating the whole thing anyway.

I don't want to start a debate about the topic, I'm just sharing this because it looks like the same playbook to me.
 
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