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Now that I'm able to be more active, I've put on muscle and look fit. Yesterday, after a walk on even ground that was too long, I ended up with an urge to lie down and rest and fell asleep from the stress and exhaustion of the walk. This appears to be a manifestation of difficulty tollerating...

Is there anything that suggests a problem with adenosine at the level of neurotransmission in ME/CFS?

The article behind the link lists "problems with memory and concentration" as symptom of more advanced biliary cholangitis. I'm not sure why FCD needs to come into this. If no other causes can be found, it's likely a symptom of the biliary cholangitis.

It would depend on the severity of the disruption and I suspect on the exact effect on signals. In myasthenia gravis, antibodies block neurotransmission at the neuromuscular junction. This leads to muscles becoming rapidly fatigued and weak with use. The weakness tends to fluctuate over the...

This is amateur speculation about ME/CFS, not sure if it's the right place. What if a big part of ME/CFS is that neurons fail to sustain effective communication over time during repeated or prolonged activity? The emphasis is on failure to sustain... things might be normal for a short time, but...

Here's one hypothesis by ChatGPT on how all these genetic risk factors might converge to cause a disease. It didn't know that these genes were related to ME/CFS and I wanted to see if it could come up with something that seems useful. Potential Clinical Features: Early-onset cognitive delay...

ChatGPT made me a nice summary of the highlighted genes in the article: Here’s what current research reveals about diseases most closely associated with your gene list: ACE, NAMPT, IL12A, PSMB4, PSMB5, PSMB7, PSMD7, DNMT3A, NME1, NRAS, SYNGAP1, NLGN1, DLG2, GRM1, DLGAP1‑4. Disease...

Abstract Unraveling the phenotypic and genetic complexity of autism is extremely challenging yet critical for understanding the biology, inheritance, trajectory and clinical manifestations of the many forms of the condition. Using a generative mixture modeling approach, we leverage broad...

My views have been influenced by the PACE trial, the difficulty replicating various findings in ME/CFS, by how widespread manipulation is in research, and the rigidity and inefficiency of the world of scientific publishing. I'm looking at these things from the outside and thinking there are big...

Do you think that the emphasis on reliability takes away the freedom that helps cultivate creativity?

The publishing works in ways that still resemble how things were done in the pre-internet era. If I think of an open source project on github and compare that to how medical research is done, the medical research seems archaic, closed, susceptible to loss of data, manipulation, lack of...

I cultivated an interest in software development and what I saw there in teams in terms of attention to quality control is a world apart from how things seem to be done in research and medicine. They didn't just build software. They built documentation with the explicit goal to would allow a...

Does anyone have an idea why genes for laminin subunits would come up? How does laminin relate to immune and neurological function? In my mind, it could be that abnormalities in genes like laminin (which have a structural function as far as I understand) could have subtle effects on the...

I think it's more this thinking: When patient perceives their illness as a serious problem, and the doctor perceives it as trivial, then for the doctor, the patient is overestimating how bad things are. From there it's a small step to diagnoses of psychosomatic illness, accusations of...

I notice how doctors often have no understanding of fatigue. There seems to be a large gap in education, which is surprising because fatigue is one of the most disabling aspects in many illnesses. They can confuse fatigue with daytime sleepiness, with rapid muscle fatigability, with depression...

The repair problem would only manifest as delayed problems occurring after activity if the person was mildly affected. To explain symptoms at rest and inability to recover completely despite sufficient, rest we would need something else. Maybe it could be that when this problem is bad enough...

Maybe we're looking for something that causes little problems while in a well rested state, but interferes with the body's ability to recover from exertion. Maybe something that's important for tissue repair/maintenance is blocked by these antibodies. While there is only a little bit of wear to...

To be a worthwhile treatment, any positive effect would have to be larger than the negative effect of a visit to the clinic and having a mildly invasive procedure done. In my experience drinking salt water is an effective intervention for the symptoms they intend to treat, but the effect wears...

You're right. On good days I overestimate how much I can do. I already crashed this spring from doing too much. I feel like I have no choice to try anyway... there's some financial support from my family but I can't expect any from the state. I'm not sure that I could be genuinely happy living...

It's sad that someone would waste their time and energy on this. At best they're slowly discovering what patients have been saying all along about the importance of accepting one's limitations and pacing, at worst they're trying to prove the same old prejudices true and spreading misleading...