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jakovmrc

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Person with Long Covid
1 post 11 comments 0 discussions 27 Jul 2026
Long COVID since March 2022 | Severe ME since February 2023 | Spent 18 months in a dark room, but made it out | Bedbound since July 2023 | Physics | #ZeroCovid
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Diagnostic Dogma
A tag exploring how medical diagnoses can become entrenched frameworks, sometimes treated as settled conclusions rather than continually testable hypotheses. Posts examine the role of clinical authority, diagnostic criteria, evidentiary standards, and alt
The FND quacks think that bringing a list of written notes to your appointment is near-certain proof that you have a psychosomatic disorder
3 months ago

A critical examination of the evidence behind so-called “rule-in signs” for Functional Neurological Disorder, focusing on the claim that bringing written notes to an appointment strongly indicates a psychosomatic condition.

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11
In reply to Sable Lynx

You didnt mention that Functional Cognitive Disorder has no evidence-based treatments.


eg https://pmc.ncbi.nlm.nih.gov/articles/PMC7850207/


There remains an absence of evidence to support any specific treatment approach for functional cognitive disorders


also https://pubmed.ncbi.nlm.nih.gov/37775194/

Future research should focus on a better understanding of disease trajectories and outcomes as well as the development of evidence-based interventions


The fact that FCD has no evidence-based treatments is all the more reason to be absolutely sure that the diagnosis is correct. If an alternate diagnosis turns out to be right you'll be very happy if that has effective evidence-based treatments (eg POTS which I suggested)


@Con Bradley What you've described could also be brain fog from long covid or similar disease. A lot of people describe things like that. If you google executive dysfunction you'll see a description, that symptom also appears in things like ADHD.


The fact that it started in the early years of covid (what you call during covid) is telling. One possibility is that you had covid but it was very mild (perhaps you just had a runny nose one day). Asymptomatic covid infections can give people long covid (eg https://www.mdpi.com/1660-4601/20/2/1613)


In practical terms what you could do is try to get a PET scan of the brain. If you look at this paper (https://doi.org/10.1007/s00259-022-06013-2) it has a lot of details. Or put "long covid brain hypometabolism" into google scholar and there are many other papers. The way you get a PET scan is to go to a neurologist, and lie a little bit, say you're sure you have long covid and that ever since you got sick with covid you've had these symptoms, and that you read online that people with long covid with your symptoms often have abnormal results on a PET scan, then show them the above paper and ask if you could have a scan like the one in the paper. One complication is that since you have a FND diagnosis on your medical records doctors will often use this as an excuse to refuse you any scans, so you might have to try different places or something.


The fact that this stops you working is really bad.


If your short of cash one suggestion is to get a PET scan in a cheaper country you fly to, for example Bulgaria or Turkey. You could do a telemedicine consultation at home, then fly there and back on the same day. The cash aspect is a really nasty part of this whole FND business that people with more more can simply buy their way out of being fobbed off with an FND diagnosis, while people with less money have to lump it.


You could do a nasa lean test (https://batemanhornecenter.org/wp-content/uploads/2016/09/NASA-Lean-Test-Instructions-1.pdf) to check for POTS, which is a possible cause of the symptoms you describe. This thing about memory and concentration problems sounds like brain fog. If you have POTS it would be caused by reduced blood flow to the brain.


Replied to ANTIBIOTICS CURED ME OF FND ! · 02 Jun 2026

@Anonymous

By my reading your academic.oup. link does not support your claim. It also has the incorrect assumption that people cannot have both Lyme and ME/CFS at the same time. You can see when people in that study cohort got a CFS diagnosis its assume (wrongfully) that they actually didnt have lyme. In fact we know that a significant number of people with post-treatment lyme disease syndrome fulfil the diagnostic criteria for ME/CFS (https://pmc.ncbi.nlm.nih.gov/articles/PMC10497844/) which is similar to how a lot of people with long covid also have ME/CFS (eg https://www.sciencedirect.com/science/article/pii/S0163445324002317).

Your claim that "the international scientific consensus that “chronic Lyme disease” does not exist" is a very strong claim. It only takes me finding ONE scientist working in the field who thinks chronic lyme is real to refute the idea of consensus. And here is one, Amy Proal, PhD.

https://x.com/microbeminded2/status/2034705144873357672

You can see in this little video she's talking about how she's a microbiologist working on long covid, chronic lyme and similar diseases, and talking about how the tests we currently have are not very good and we need to develop better ones. If you search Amy Proal's twitter you can find many other instances of her talking about chronic lyme disease as a real legitimate entity. So there you have it, there is no consensus against chronic lyme, in fact it's controversial with arguments in both ways. Although its true that there is are randomised controlled trials showing that antibiotics are effective for chronic lyme.

However since we're talking about randomised controlled trials, look at this paper (https://pmc.ncbi.nlm.nih.gov/articles/PMC7850207/) titled "A practical review of functional neurological disorder (FND) for the general physician". It says

There remains an absence of evidence to support any specific treatment approach for functional cognitive disorders. Clinical experience suggests that a cognitive behavioural approach may be helpful

Read that again. ABSENCE OF EVIDENCE. In other words FND/FCD is exactly as quackery as chronic lyme in this respect. Both have a controversy of whether they even exist, and both have no treatments backed by randomised controlled trials.

The comment is talking about Lyme neuroborrelios but this is distinct from the hypothesised chronic lyme, and the symptoms and signs will be different. Similar to how acute covid symptoms are often different to long covid symptoms.

If @Anonymous really is Anonymous Neurologist, then that means they've commenting a lot on many posts on this website. I've noticed that they have not commented on my post (https://fndnope.org/posts?postId=64) called "The FND quacks think that bringing a list of written notes to your appointment is near-certain proof that you have a psychosomatic disorder". The fact that @Anonymous has said nothing about it has to be a tacit admission that my post makes a good point.

These infection-associated diseases like post-Lyme and ME/CFS have been neglected by medicine for decades. It was a widespread view that they are actually functional or psychosomatic illnesses, and because of that there was barely any research funding for developing treatments. But that's changing in a big way because of the covid pandemic. Long covid is so prevalent that its undeniable just on an anecdotal level that covid is physically damaging people's bodies leading to chronic illness. The situation with long covid really discredits the FND paradigm because it shows how a disease was ignored for so long because doctors thought people were just mental.


Replied to ANTIBIOTICS CURED ME OF FND ! · 01 Jun 2026
"Evidence-based medicine is when things you dont understand are functional". Thanks for sharing @Lymewearier. Wishing you the best. One question is how are all your symptoms now? You talked about fatigue, abdominal bloating, constipation, etc. Are they all gone/better?

People with long covid (LC) or myalgic encephalomyelitis (ME) are very commonly misdiagnosed with FND. Because these conditions have to be managed to help prevent further deterioration, getting the wrongful diagnosis generally results in massive worsening. Much like your tragic example of the lady in a wheelchair. I must share this tragic story of someone diagnosed with FND who later turned out to have ME and hEDS > Neurologists falsely diagnosing people with Functional Neurological Disorder (FND) really matters. It destroys peoples lives. I was diagnosed by a neurologist with Conversion Disorder (what FND was known as before they changed the name). > I believed him and spent the next few years treating what I now know is ME and hEDS as if I had a psychological condition - they even put me on a bunch of psychotropic meds. > The province paid for me to get weekly Hypnosis. > Eventually I was bedridden, had to give up my career as a professor, had to go on 100% disability leave and move back in with family. If I had gotten the right diagnosis early enough I might not have declined to severe. In an alternate universe its not hard to imagine this happening for diabetes. If diabetes were be controversial much like LC and ME today. Someone going to the doctor would hear "dont believe what you read online about diabetes, you can eat whatever you want, your blood sugar is fine and theres no need to inject yourself with insulin. We're going to give you CBT so you can move past your fixed beliefs about insulin resistance". A person following that advice would soon go into diabetic shock and could easily die. The only difference between the diabetes example and diseases like LC, ME, hEDL, POTS, etc is that those are much less well understood by medicine with much less awareness. FND (and Function Cognitive Disorder, the subtype I was misdiagnosed with) are diagnoses of exclusion, as we can see in this paper (see box 2, it says "Symptoms or deficit that are not better explained by another medical or psychiatric disorder."). So when you have other medical diagnoses which are poorly understood, from the point of view of a doctor these other diagnoses wont explain the symptoms, because they dont know much about them. And from that its easy to see why these people are often misdiagnosed, sometimes with catastrophic results.

Wow this sounds awful. Real medical abuse. I'm sorry to hear this.

Replied to Using medication as a diagnostic tool · 24 Jan 2026
Have you considered Chronic Lyme? Lyme is an infectious disease spread by ticks, small insects that bite people outdoors in grassy or wooded areas. The bacteria can lay dormant in the body for years and then become reactivated. The symptoms can vary vastly. Lyme borrelia is the same family of bacteria as syphilis, which also has widely varying symptoms. One common presentation is MS-like symptoms, your wife having those made me think it could be chronic lyme. Some people who had a MS diagnose later found they actually had chronic lyme, and treatment with antibiotics made their symptoms go away. The fact that your wife benefited from prednisone would also match since lyme usually involves widespread inflammation. The bacteria can directly infect the brain giving rise to various neurological symptoms. If you want to pursue this, you need to find a chronic lyme specialist (aka lyme-literate medical doctor, LLMD). They can listen to your symptoms and order blood tests. Although chronic lyme can be quite hard to diagnose and sometimes people just try the course of antibiotics to see what happens. A key blood test a lyme specialist will likely do is test your wife's CD57 level. This is an immune system related to fighting bacteria. What happens is your immune system struggles against the lyme borrelia but cant win, so it becomes suppressed. As the antibiotics kill off the bacteria the CD57 slowly rises to more normal levels. Note that chronic lyme is controversial in medicine. Some doctors say it doesnt exist. Acute lyme is considered mainstream medicine but chronic lyme is controversial, similar is how acute covid is mainstream but long covid is much more fringe. I'm not saying your wife definitely has this, just that its something to consider Resources: * https://me-pedia.org/wiki/Chronic_Lyme_disease * https://x.com/search?q=from%3Amicrobeminded2%20lyme&src=typed_query * https://www.ilads.org/ * www.reddit.com/r/lyme

I've had long covid since March 2022. I've benefited from various medications like antivirals, antihistamines and statins. Recently a neurologist told me I had FND, despite the fact that I have an abnormal cytokine panel blood test, and that the medical literature has many findings that people with long covid often have raised cytokines. The neurologist tried to handwave this away saying sometimes cytokines will fluctuate slightly, the problem with that is my cytokines were not slight fluctuations but dramatic fluctuations. Two of my markers were 10x outside their normal range. Before the appointment I had read a little about FND. When the neurologist diagnosed me I said that I read how FND is the new name for hysteria and conversion disorder. He was this was not true. Later on I went back on the internet to double check, and found what I was is - in fact - true. So did the neurologist lie to my face? How is anyone meant to trust these doctors behaving like quacks?

Back in the 1960s people with MS would get locked up in psychiatric institutions. It was only the 80s when the MRI scan was invented and the demyelination was observed that doctors finally could not ignore the physical nature of the disease. I wonder did any of the 1960s doctors answer to a court for the crime of locking up people with MS? There's a long list of diseases thought to be psychosomatic before their organic nature was discovered. Tuberculosis, AIDS, H. pylori infection, the list goes on

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