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As you point out, definitions matter. But I think it is equally important to how it is framed. You can share the same symptoms, but any physical limitations - in the signalling scenario - would just be an error in perception, e.g. you only think you are limited to 50 steps a day, but in reality...

It would be helpful if you would be specific about what you mean about "brain events". Very specific, without invoking analogies.

Your analogies simply serve to deflect, at least potentially. You - it seems to me - keep reducing our pathology to some kind of mistake of perception. Er, a magical signaling error of some sort which suggests to me we are not really sick, we just think we are due to that weird signaling...

What?

OR you know, we can just have a couple persistent pathogens which we either cannot treat or have not tried hard enough. The mechanisms behind these pathologies is interesting, to be sure, but on some level it makes more sense to eradicate the pathogen tandems.

Oh, it's late. She used to head the US CFS interface for the US Congress, and she did so admirably for several years. She didn't sell stuff, she was above any monied interests. She always was straightforward: She knew you were sick, but she'd say eye-to-eye there was very little she could do...

I'd consider Sue Levine before she retires.

They kinda stumbled onto the Bb thing. Having found that, wouldn't it have been prudent to test for the other myriad of tick-borne diseases? Maybe it's different in Europe, as in less attentive to the risk.

That would be a 50% treatment failure rate. ETA, if I'm reading the study correctly, neither patient fully recovered. I'd be interested to see if they revisit these patients after 12 months and 24 months.

I am struggling to conceive of a perception that is not subjective.

Personal values?? How is there not a toxic level of judgment already embedded in one of their first (contrived?) definitions? When this protocol fails, what does it say to the patient about his/her personal value system?

I think I've had at least three of these well-known research/clinicians recommend sleep meds for my ME/CFS. Four? Go figure. Maybe there's an experience gap between theory and practice that clinicians often can bridge better than academians. - and thereby better serve the patients both profess...

Understandable request. How does this keep the thread specific to @Saz94's request - other than undercut it? I've had a few well-known MECFS experts recommend sleep meds to me.

They learn. And these two issues are almost certainly tied into one another. They just learn to distinguish the root issue from an immediate downstream event. It's similar to avoiding PEM as best as you can; you become sensitive to key thresholds.

I'd be careful combining "useful and safe" in the same sentence - for people with intense chronic diseases like ME/CFS, half of that equation has had its significance diminished. 20-30% of the population don't have ME/CFS. Some pwME report severe consequences for not achieving a certain sleep...

I have seen a few diligent doctors, but I've never met one who is diligent enough. They all bring their own biases to the game. It is encumbent on the patient to be diligent enough. That aside, even the most caring and diligent of doctors is limited by diagnostic shortcomings. When it comes to...

By extension, it seems not unreasonable to speculate that a significant portion of ME/CFS patients - qualified by competent clinicians - in reality have Lyme or one of its sister TBDs, or a tandem, or a country club worth. I invite anyone (@Jonathan Edwards ? @Trish ?) to disprove this idea...

Neuroborreliosis testing is notoriously suspect, especially - imo - after they changed the testing protocol about 15 or so years ago to an antibody index. They really have very little other than BS to rest any diagnosis on. The CD57 thing is similarly tarnished. Cd57 is relied on by a large...

Or pest, something to avoid, at best to be tolerated (even while we are being swatted at), but not indefinately - which speaks to why so many of us are left untethered to old friends and family members alike. Real diseases either resolve or kill. Everyone knows that.

Did someone give you a neurolyme diagnosis? Did they use your CSF to determine it? Don't mean to pry, I'm just curious. I had a lumbar puncture that help determine my neuroLyme, but there were politics at play and associated controversy. So, it's always interesting to me.