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

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).

 

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.

 

Yuppie Flu, Shit Life Syndrome, Tik tok disease.

It’s not us who are jumping on “disease trends” because we see them, it’s them who jump on whatever the current ableist stereotyping trend is.

 

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?

 

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.

(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.

 

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.

 

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.

 

I think the title - 'neurological or somatoform?' - says it all. Those aren't the options. They've left out 'a biological process we haven't yet identified' because they've learned nothing from the history of medicine, or even basic logic.

 

The final version of the detailed critique of this review is now published on mecfs.hu in Hungarian: Kritika a Long COVID – neurológiai vagy szomatizációs betegség? publikációhoz (Ideggyógyászati Szemle)

You can also read the Google translated version here, although due to the language differences, the translation is probably quite clunky.

 

Well done, Wyva, good read. (Thank you for providing a GT link. )