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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...

The day is young. I have faith in humanity's penchant to economize at the expense of society's fringes, and to somehow shoe-horn in "Science" for justification.

I would like to participate in that Mount Sinai effort. I thought I reached out to them, but never got a reply.

I can appreciate the good that can come from GWAS research. Validation leaps to the front. Possible therapeutics as well. I worry, I think, even more about the potential for harm. What if we find people that get fibro or ME/CFS or LC or late stage Lyme etc, all share common gene traits that...

A Lyme diagnosis can be perceived as toxic. I wonder which diagnosis carries more stigma: ME/CFS or Lyme. I suppose to a certain degree it depends on geography. Not sure it matters as much as it should, unless the objective is to compare levels of ineptitude. If the goal is to find out if...

Sheesh. Mischaracterizing the nature of a disease is seldom a good thing. Now that I think on it, it's probably always the opposite of a good thing. The Press needs to start showing some spine and walk away from the spoon fed boiler plate. In about 80 percent of the time. The rest of the time...

Invoking science standards to admonish a poster while using the Internet (when historically the Internet was considered by many as such a low bar) strikes me as ironic. Full stop. The observation was purely whimsical. That being said, I have been a supporter of researching on the Web, and...

Ah. Sorry. I must be dating myself. There was a time (not too long ago it seems to me) that using the Internet to uncover scientific facts or truth was considered a fool's errand, riddled with risk of misinformation, and anything but scientific. So. Ironic? Or not.

The irony that this is indeed supposedly a science forum accessed via the internet notwithstanding. :)

Wild speculation? Don't wish to unpack all that, but why would it? Do you imagine we'd be able to distinguish it or even infer its persistence or lack of, no less prove it? All I am suggesting is that just because we fall short of certitude, doesn't mean we should rule possibilities out.