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Not sure if they are the same thing. We hear patients talk about brain fog rolling in like, well, fog, as soon as they hear noise. Or getting immediately debilitated from the light. Seems to me that those are more directly neurological than being mediated by anything.

Another thing we need to keep in mind in this quest to discover the mechanism of ME/CFS is the light/sound sensitivity. Non-trivial number of patients report their symptoms worsened by light/sound. Perhaps not as important as PEM itself, but the theory still needs to explain the light/sound...

I take that you are saying IFN-I response to virus (or viral mimic in this case) takes 12-48 hours? I was wondering more about how the IFN-I hypersensitivity (to viral infection) results in worsening of symptoms 12-48 hours after exertion. Maybe they share the same mechanism leading to IFN-I...

The question I always ask: how does IFN-I hypersensitivity create PEM with 12-48 hour delay? Che/Lipkin paper also talks about hyperactive immunity (and chronic inflammation) but doesn't clearly link it to PEM other than many of the abnormalities worsens after exercise.

That would be false positive of ME/CFS. If you meant false negative of MS, yes, that would certainly matter because MS has effective treatments. ME/CFS doesn't.

I meant ME/CFS diagnosis, not diagnosis/prognosis in general. False negatives don't matter as much since there is no effective treatment anyway. And that's probably most doctors, who don't have enough knowledge or experience, are reluctant to hand out the diagnosis even when you appear to meet...

By who? the doctors who are supposed to be in better position to assess than the patients? Yes, if you are misdiagnosed by the doctors. That brings to my point. You get your diagnosis, and then you have to ultimately decide if you are satisfied with it since there is no diagnostic test to...

Well, that's not what I meant by "satisfied". You go through the standard battery of test and then decide whether you are satisfied with the diagnosis. You live through ME/CFS and its PEM, you know there is nothing like it. Doctors without the actual experience may not.

And doctors do? I'll claim that patients know A LOT more about ME/CFS than average GPs or even specialists by the time they are through a few.

People will do that with or without the diagnosis, and that may not be a bad thing given the prevalence of misdiagnosis often mentioned in this forum. I think it's really a matter of whether you are satisfied with the conclusion that what you have is indeed ME/CFS, not the diagnosis itself which...

That could be explained by the sensitivity to immune signals rather than immune signals themselves. If your fire alarm is overly sensitive, it would go off by just a hint of smoke molecules in the air rather than an actual fire. My theory is that something, probably in the brain, got...

CCC is probably overly strict. But that is a good starting point, IMO. Given the lack of effective therapy, there isn't much value for diagnosis anyway other than excluding other treatable conditions. And you'd want to explore all other possibilities before settling and resigning.

To me, the exclusion process is rather straight forward. Test for and rule out the usual suspects, and then it is ME/CFS if you have PEM as a symptom. The tricky part is how you define PEM. There seems to be enough of misunderstanding of PEM, so that conditions like hemochromatosis are sometimes...

This sure sounds like a working memory problem all too common with brain fog, allegedly caused by inflammation in the hippocampus area. I think the importance of working memory in intelligence and other mental functioning is underestimated. Even the most brilliant brain can't function without...

This sounds superficially similar to the recent talk in IACFSME conference about mitochondrial dysfunction causing ATP shortage in LC vesicles in brainstem, which in turn resulting in norepinephrine deficit and brain dysfunction:

I forgot to mention, btw. I think attempts to objectively measure the severity, exertion, and PEM is a worthwhile effort. We talk about the exertion and severity in subjective, qualitative terms; we don't know for sure if two different severities are comparable. Objective scalar values to...

I think the root of the problem is that they didn't quite believe ME/CFS is real. So, they had to treat this post-viral thing called LC as something new and therefore start with "clean slate". The upshot is $1.4b down the drain repeating the same thing that went on for the past 40 years.

I've done some study on this years ago with fitbit and I couldn't extract anything useful out of HR. It wasn't much better than a noise in predicting fatigue/PEM. But I did extract some signal in10-40% range from minute-by-minute data of calorie expenditure. I'm not sure how cal/min data...

My mother used display something similar to PEM late in her life. She would one day feel energetic, do a little more than usual and then spend the rest of the week in bed. Everybody thought it was her age.

Then you could say something like "when I was young yesterday,..." I once wrote a poem that went "when I was young a month ago..." when I was getting knocked out weeks at a time.