• 6 Posts
  • 14 Comments
Joined 4 months ago
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Cake day: July 14th, 2024





  • I’m sorry I really shouldn’t be giving medical advice. It’s been a long time since I studied neurology. I’ve spent the past decade only on post viral diseases like ME.

    But please please find yourself a doctor that listens and cares if that is possible. Because it clearly sounds like you need tests and you need a doc thats available for you. Maybe join some local MS support groups and ask if anyone has docs that do a really good job and try from there.

    I’ll tell you this as a doctor. I would stay the hell away from some of my colleagues. Not every doctor is anywhere near good at their jobs. Some don’t care, some barely passed and don’t want to learn anything new, some like to always assume their patients have psychological problems. Find yourself a good doctor who is proactive and cares, and everything will be so much easier. Sending you good luck.





  • Hey I’m a researcher who works on ME (in the past called CFS).

    ME/CFS is currently classified as a disease/biological illness according to the CDC.

    ME is a disease state in itself. We don’t know much about it, but it can’t be explained by other diagnoses, as the defining factor, neuro-immune abnormalities including immune activation showing up post exertion is unique to it. You’re completely right that we don’t yet have a reliable biomarker. We have a test that differentiates from healthy controls, but it was discontinued for ethical reasons because conducting the test leads to a sometimes permanent worsening of the illness.

    In the past it’s been mixed up and jumbled a lot, but the picture is getting clearer.

    There have been a few case reports of degenerative forms of the illness. But in general it takes a more classical relapsing remitting pattern. Although even in less bad stages some patients are severely functionally disabled, even bedridden and tubefed. It has a really wide range of severities with the least severely affected able to work part time and walk and travel, while the most severe might not even be able to communicate.









  • 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.




  • 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.