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Seems like a "diagnosis" to me. "Diagnosis" would be safer than a concept. Everything is a concept, and concepts carry unintended ambiguities when we've enough of those already..

Thank you very much. I hate to ask questions when everyone else gets it. I think this may be wrong on a couple of levels. I think you may be oversimplifying the ME/CFS experience. More worrisome to me personally is this again seems to suggest issues with perception e.g., we think we cannot do...

Thank you, and sure, but how does that relate to ME/CFS, and how do perception and artificial stories in our brain cells and faulty neural signaling fit? If I say "persistence" is at the root of ME/CFS, or a corrupted immune response, or an autoimmune issue - any of these could qualify as an...

I'm sorry, I find this "perception of voluntary action" reference combined with "our own bodies are narrated in artificial stories in our brain" - both in close proximity to ME/CFS - a little disconcerting. I'd greatly appreciate you explaining how this fits your ME/CFS understanding, preferably...

Oversimplifying what?

ME/CFS and LC are discussed along with Lyme, as well as PEM. https://www.lymedisease.org/complexities-long-haul/

That's fair, although I'd venture they're out there. The mind-over-disease thing doesn't seem to pervade Lymeworld like it does ME/CFS (at least not that I've seen). But because Lyme is purported to be caused by a bacteria, and persistent Lyme supposedly occurs in the face of failed antibiotics...

Maybe she's been told she has both. They are both diseases that boil down to belief systems. They are beliefs in a disease, whether held by the patient or the clinician. Usually neither diagnosis is concrete.

Would't peripheral sensitisation make ME/CFS an interoceptive disorder? Does this align with Baraniuk's theories at all, or was it informed by them? Baraniuk: "Our magnetic resonance imaging studies of exercise-induced changes in brain blood flow are a model for postexertional malaise/symptom...

I am thinking you're not suggesting this 'peripheral sensitisation' is a thing in and of itself - it doesn't just happen, we don't grow into it. It is downstream. Something brings it along, and something maintains it? If so, what? Or am I misunderstanding? I'm not clear that we know they are...

Yes, the relative unresponsiveness of muscles is part of it, as is the exhaustion. But so many of us have that "poisoned" sensation. That gets its volume twisted high. As does the acid feeling if you've that. As does the head pressure...etc. For some its different areas of pain. Point is, your...

Pacing isn't therapeutic, it's preventative. Our systems don't shut down. They scream bloody murder! PEM isn't a reflex learnt to avoid being burned, it's being burned and feeling that pain.

Like many others, I rarely am exposed because I cannot get out much. But I do get the rare fever on occasion. However, I'm not sure if it would clinically qualify as such since my baseline temp is relatively low (96.9 F vs 98.6F). So a fever might look like a non-event to any doctor or nurse. I...

I suspect that there are, at least in some pwME, multiple pathogens (viral, bacterial and/or parasites) simultaneously at play. It may be a crap shoot trying to figure which one, or which combination, cause symptom persistence since diagnostics can be wholly inadequate.

Hype isn't always the same as pseudoscience, but I get your point. With all due respect to Jo Edwards, to fully appreciate the challenges, you'd have involve a Lyme expert. It's a curious conflict for me. I've usually advocated for keeping these diseases distinct re: research. Which brings me...

Is a gag reflex sickness behavior? This was a decade ago. I remember when I was a Gerwyn fan (if I've the right Gerwyn). I still miss those "concepts."

@Jaybee00 , why do you say that? I want to believe in this group, but I'm too much of a cynic to begin with. Do you know something more tangible not to believe?

If I were going to mention ME/CFS in the context of a concept, I might want to mention how such a concept can be abused, and cite the Walitt NIH study as an example.

Lots of good stuff here. I'm a bit leery of referring to ME/CFS as a "concept" Feels uncomfortably close to idea or belief, and can illness belief be far behind?

There's reason to be skeptical of any positive Lyme tests - and for that matter, any negative ones. They are almost all indirect tests that only suggest exposure or lack of it. They all fall short on the confidence scale. It's certainly more conducive to fleecing patients with fake positive...