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One last observation about definitions: In 1980's in the US, if you had documented Lyme, and were treated, and symptoms persisted, you were categorized as having chronic Lyme. Period. Definition back then of chronic Lyme: Lyme disease that cannot be resolved with "suggested" treatment protocol...

This should not be about the chronic Lyme label, but they introduced it into their screed. So I just want to point out how frequently chronic Lyme was discussed and researched and acknowledged prior to the 1990's - when vaccines started to come into play. We can thank the Bayh-Dole Act for much...

See? Definitions. :) There absolutely can be evidence of initial Lyme infection in chronic Lyme, certainly when it comes to formal research. I was enrolled in an NIH chronic Lyme study about 15 years ago, and you had to have documented evidence of a Lyme infection in order to participate. Some...

Some heavy hitters from the Lyme field (Patricia Coyle, Maria Gomes-Solecki; some of you will recall Steven Schutzer when he compared Lyme with CFS several years back). Why anyone would lead a research-methodological guideline with Lyme - arguably one of the most politically contentious and...

What a kind thing to say. Thank you. .

Recently found another embedded tick, hidden on my upper back. Promptly removed, but within a couple of days a bulls-eye rash appeared, plus a fever and severe balance issues and gut problems. Doctor said it was Lyme with possible babesiosis - she was concerned about the overt neuro involvement...

Agreed. Much better.

The literature is loaded with crap. Where we can, we should try to change it, or at least not indulge in it.

"Sickness behaviour" was coined by a veterinarian because his patients could not communicate with words. Humans don't suffer from that deficit. "Sickness" suffices; otherwise we invite attention from a group we don't want. Right, which cause us to feel sick somehow. Ok. Just acting on how...

I don't understand. Omit "behaviour" from your sentence, and doesn't the sentence still stand on the same merit? ETA: Better yet, change sickness behaviour to feeling sick. But I think even that's implied simply by the word "sickness" Sickness can be differentiated from disease in that a...

The sickness behavior schtick has always struck me as absurd. It's one step removed from the real subject. This sickness as a defense mechanism is more of the same. Might as well say a flat tire on a bicycle is the bike's defense once it gets a nail embedded in it.

I suspect most clinicians don't give it enough time to think it through. It's transactional. Researchers are different. Shame on them as an institution. And screw the lazy-ass clinicians. Rat bastards.

What an odd observation. I shun most things psychological when they pertain to contested disease. I nurture a special aversion as it pertains to ME/CFS But I also hold a fondness for confronting straight on the hard realities of my disease. Let's see. Three broad PEM categories: Physical...

Natelson?

I think it easier to write of a triggering event for PEM, than for ME/CFS. Sorry if that's obvious.

This.

You're relatively new. Exertion is exertion. Stress can translate into exertion. Well, let's not exclude "Other". I've a few that can comfortably fit there. Government interference comes to mind.

This could be its own thread. It's ALL about diagnostics. Diagnostics in theory globally would close down psych shops. They would clear up if we've infections at play or massive immune malfunction or another novel issue. They would shut down forever the calumny about our character. Fifty years...

You wrote perfectly. If it matters, I agree with your opinions. I have edited that piece. ;)

Yes. Well said. Remind me how long a half a century is? When should we start getting pissed and discard more cautious language on a wholesale basis? Can't we be circumspect but still say WTF, what we say matters?? Why do I feel like this is the true battleground, and most here would rather...