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Beyond her book, she has a bunch of salient essays in good journals like the Atlantic. In what is an important consideration for me, she seems nice, too. I sent her a pedantic and likely condescending email a while back and she responded with grace.

Good luck with that. PEM doesn't necessarily adhere to schedule. It even sometimes presents chronologically different depending on whether the exertion is physical vs mental. Precision in general for pwME would be great relative to PEM, but many of us suffer variations in how long after...

I am a little concerned about their assumptions and inferences (and I'm a fan of this tandem +). Then again, I'm unclear about some specifics. Could they break out individual vs pooled? I apologize if I missed or forgot that. Main assumption that gnaws at me: Why assume a pathogen is not at...

I'm having trouble reading the paper. Do these pwME have normal platelet counts? What happens if you have perpetually low platelet counts, and have some issues with clotting? I have ME/CFS and PEM, but I have low platelets, usually out of range low. I wonder if this matters. I am about to find...

Look up Vickie Logan. Her singular case study almost dismantled Lyme orthodoxy. Before the medical case study, her story was just an anecdote. So one patient sans statistical associations can influence in a powerful fashion medical science.

By reading. I then explain why reading levels the playing field, e.g., it provides readers with knowledge of those associations where they have been documented.

Not sure what "So, patients read" means? It means pretty much everything clinicians can read, patients can read, and frequently do, and maybe some things clinicians haven't read. It means pwME are no more likely to have uninformed opinions about ME/CFS than clinicians - and usually are far...

You cannot see the irony here? Conventional medicine has not allowed poor quality evidence to slow its momentum for years, and yet the responsibility lies with us? But I tell you that I suspect most here would have no problem accepting that. It's just that I'm not really clear on who decides...

So, patients read. And don't be so fast to dismiss the power of anecdotes. It's what many case studies are all about, and case studies frequently defy large study results, and can help inform changes to orthodoxy.

What do you imagine patients bring to the discussion? What do you imagine clinicians bring? They both bring expertise, albeit it different forms, sure. But neither brings definitive knowledge of cause when it comes to persistent symptoms. Neither. Neither brings adequate diagnostics to help...

Widely believed by a medical community that should be embarrassed and ashamed of itself. One that I suspect History will not reference kindly. What an unfortunate stereotype. But no worries since we seem incapable of convincing the past 50 years of medical profession much of anything. Hubris is...

I want to agree with these guys, but it's a bit theory-heavy, and therefore kind of a house of cards. Besides, they lost me with the relapsing thing. It suggests to me somewhat of a misunderstanding of daily life with ME/CFS. If this is their way of speaking to PEM, no, that won't cut it. To be...

One of the authors is the Head of NIH Lyme research. A couple authors are from the Lyme team. Moreover, one in five Covid patients walk away with persistent symptoms? Man, that 20% incidence rate keeps coming up in contentious areas. Wish I could think of where else... Curious, though, that...

I am confused. Aren't oligoclonic bands just signs of brain or CNS inflammation, and though unusual, they're not specific to MS anymore than CD-57 is specific to Lyme? In fact, you can sometimes see those bands in spirochetal diseases that can impact the brain such as syphilis and Borrelia...

Explain this to me, please. Then, if you would, explain it to me where it doesn't potentially end in a dystopian fashion for people it identifies with genes that renders them susceptible to many diseases, more than most people who presumably don't have that gene iteration/mutation. Nods. It...

Inflammation is a downstream effect. It does not appear unprovoked; something generates the inflammation. It's not the "cause." With respect, you seem to be assuming something here that perhaps you should not. :) Afterall, this may have no chance at all. Perhaps the best chance is an all out...

I doubt it's inspiration they'll find.

Only if the cause is a genetic anomaly. I fear anything else discovered, e.g. a predilection to develop long-term sequelae, could lead to some unwanted consequences. Best to hone in on cause(s), imo, from multiple vantages. I think we can no longer afford to look under rugs sequentially. If any...

Seems to me if a study has the word "health" in any way near the word "behavior", someone is going to get screwed.

Yep. But the idea that Lyme diagnoses are handed out like candy with no concern about serology is pretty much the stuff of propaganda, at least in the US these days. I cannot speak to Europe. It's all about what we know and what we don't. The bottom line is we don't know as much as orthodoxy...