And patients with psychological issues tend to realise their issues are psychological in nature and vice versa. Although both have downstream effects. And in my above example. The psychological burden of thinking you have (having) a debilitating psychical illness but being disbelieved by your doctors must be enormous.

Yeah definitely. Really appreciate your sceptical of the psycho/functional stuff too. I find some schools of medicine have a big ego to assume anything we can’t figure out must be psychological and not that we just haven’t figured out what’s wrong yet.

It’s a common story in medicine. From peptic ulcer to lupus, illnesses thought to be psychosomatic or “hysteria” turning out to be genuine physical illnesses.

We do know it is multisystemic. We don’t know if it is mediated by the CNS. But there are some extensive neurological problems. From the latest long COVID research, the leading theory is that, (I’ll say this in vague terms because I don’t want to sound too concrete as this is all hypothesis). Is that the Immune System, specifically T-Cells and B-cells, along with the complement system start working weirdly, we start seeing depletions dysregulations and abnormalities, which don’t happen in people who recover normally from COVID.

Then we start seeing problems with oxidative stress, and biopsies show damaged mitochondria with numerous abnormalities. It is thought that the problem with the mitochondria, including the resulting increased oxidative stress, which we havn’t fully figured out. Starts causing neurological issues.

In that sense, the leading theories is that it is multisystemic and immune mediated, but we obviously can’t rule out centrally medicated as we are still in such an early stage of research.

I’m extremely curious what we’ll find out in the next couple decades :).

There’s also the possibility that “M.E.”. Just like the “waste-bucket diagnosis” it’s predecessor “CFS” was, is more than one disease. Which would explain the heterogenity and diverse symptom presentations. But what most leading researchers seem to think is that it can take a progressive form (through PEM, don’t have time to explain what PEM is but it’s a defining feature and it can lead to permanent worsening of the disease), which can cause it to start producing more symptoms and affecting more body systems.

BTW: I appreciate your curiousity and open-mindedness. Gives me some faith in the medical field. Most older colleagues who aren’t specialised in this they hear ME, CFS etc. and their mind goes oh like psychosomatic fibro type stuff and they refuse to read newer research because it’s a “waste of their time” or to genuinely listen to one of us explain. It’s quite shocking too see this kind of groupthink. The new fashion for these types of docs is to diagnose everything they can’t understand from weak limbs to seizures to M.E. type presentation as “Functional Neurological Disorder”, the literal DSM-5 successor of conversion disorder aka. hysteria. I’ve had a decent couple patients who ended up having rare-autoimmune diseases or even a simple MS type presentation, who lived multiple years with the FND misdiagnosis.

Yeah, it’s a strange one because it’s two different diseases in one.

Since the 1980s, a disease characterised by fatigue and mostly thought to be caused by psychological factors has been called “chronic fatigue syndrome”.

Since then, we (biomedical researchers) have found a far more specific disease within this broad category, often caused by viral infections, which we named Myalgic Encephalomyelitis, which is what an original outbreak was called in London, I believe.

Anyhow, M.E. has very strict diagnostic criteria, requires some features that don’t present in any other illnesses, and requires a substantial decrease in physical functioning (>50%). Here’s the International Consensus Criteria for example. Interestingly, some cases present without the “main symptom” of fatigue, as defined by chronic fatigue syndrome. Most chronic fatigue syndrome diagnosis criteria, such as the Oxford Criteria, require only unexplained disabling fatigue. For M.E. subgroups defined by strict criteria, we also have clear physical abnormalities present, which show it is a physical disease and not psychosomatic.

The problem arises because most of these discoveries were made in the past decade. So, nearly every trained doctor and medical professional who advises the government treats M.E. as a “psychosomatic fatigue disease,” which is really far from what it actually is. This has even led to a few high-profile cases of patients dying in care after being refused a feeding tube and dying of starvation, for example, since M.E. can cause fatal gastroparesis.

In practice, patients are often treated for psychosomatic fatigue and even blamed for their symptoms, which is far from the actual case. Unfortunately, most of the English-speaking world is quite behind on this. The Mayo Clinic Proceedings is decent, but the CDC, NHS, and NIH are still holding onto some outdated beliefs. The real push has come from Austrian and German-speaking medicine (including Dutch), where some major discoveries have been made recently.

We had a young patient tragically die in our care a couple of months ago; there seem to be some cases that are progressive.

It’s similar to fibromyalgia in that it includes a lot of symptoms, is of unclear aetiology, and has often been treated as psychosomatic in the past. But, in practice, they are quite different diseases, with fibromyalgia being characterised by high levels of pain and thought to be a pain processing disorder with “central amplification.” Meanwhile, M.E. is mostly characterised by severe functional disability, and we have found different immune abnormalities and depletions, as well as problems with mitochondria and increased clotting. As of now, we don’t know how this all fits together. Something I find interesting is the only drug that has had some positive clinical trial results is an AIDS drug. Although none are approved for the disease as of now.

There’s a feature of some Long COVID cases (~50%) which is also the defining feature of an illness called ME/CFS which has been caused by various forms of viral infections throughout history. (It is thought that a lot of Long COVID cases are ME/CFS). Anyways this feature is, Post-Exertional Malaise, a worsening of the illness after exertion beyond a certain threshold, which can entail hundreds of symptoms and be permanent.

This paper is a review of some of the biomedical studies looking at what could possibly cause this, and finds there is repeated data of Microvascular (blood vessels) and immunometabolic (metabolic markers relating to immune function) differences with healthy controls.

The leading hypotheses are that this is caused by mitochondrial dysfunction which is mediated by a dysregulated immune system.

Some of my colleagues were co-authors on this paper. I’ll forward the feedback that it is jargony.

Lol

Are octopus related to octopus? I mean technically they’re 100% related, but also they aren’t related as related implies not being. Depends on your interpretation.

“minor edits”

Basically asks you to rewrite the whole thing

If you’re healthy.

Sucks to be disabled or immunocompromised or at risk in any other way…

Also, it’s still killing at much higher rates than the flu.

And I won’t even start getting into Long COVID, which I’m currently researching. But it is a major crisis. 2-4 million people unable to work in the US because of it.

This fact makes me viscerally angry

As a neurologist (specialising in post-viral illness) I don’t have the expertise to comment on points 2 and 3 of your post, but point one is completely correct.

As a neurologist, who has recently specialised in Long Covid. I’d say 95% of studies in the field are untrustworthy.

As with any health condition where the biological factors are unknown, a group of psychiatrists and psychologists, the same that targeted autoimmune diseases before they were proven to be “real”, have flooded the field claiming patients are suffering from hysteria or psychological issues.

None of their studies manage to prove anything whatsoever. They have published thousands of studies which go something along the line of: “People with long covid have more mental health issues, therefore, long covid is not real, but caused by hysteria”.

This proves no correlation whatsoever though. Every single chronic illness / disability has higher rates of mental health issues, yeah turns out being poor and marginalised + loosing a lot of what you had in life + chronic pain is not good for your mental health. In fact studies have found that before the covid infection these people have the same rate of mental illness as the normal population.

This is just one example, but legitimately > 90% of psychiatry / psychology studies I read in my field are extremely poorly done to the point of being worthless or even harmful.

There’s also a problem in that genuine biological studies get reported on really poorly by the mainstream media. I co-authored a paper showing that in 3 tests of cognitive function, spread over three days, people with long covid did not preform worse than the general population. However, if you made them do these three tests in a row, people with long covid would preform markedly worse than healthy controls, so they have a problem with cognitive endurance.

A handful of news outlets reported on this, and oftenso the news articles did not include the second part of the study, just saying “people with long covid do not have cognitive dysfunction” or “brain fog debunked”. There’s really a push from the right to delegitimise long covid and it is hurting scientific integrity hard.