Search results

I have to admit to both @Verity and @Utsikt that's a dubius scientific method I am embracing. :)

What percent of us return to our premorbid levels? We don't. So perhaps the initial insult caused mci, or other damage, and then we level set. Maybe. But I feel worse, and that's my metric after studying all these studies about so many of us and folk like us for far too many years. BTW. I've...

Over 30 years? Sure it is. I've steadily seen my IQ drop over the years. The last I checked, it was down 20 points over premorbid levels. Now, it may be fair to claim those are objective tests, but I can feel my Stupid, much as I can the sense of poison that courses through me that no one can...

Maybe. For those that report sustained improvement, is that improvement back to before symptom onset? If not, and for those of us who do not truly improve, I'd stick with degeneration without necessarily the implied downward continuum. Truth be told, the terms are not mutually exclusive and...

Like most, I didn't know my first symptoms were symptoms. Hindsight granted me that insight. My very first was a balance issue that affected my drive to work. And driving at night. I say "balance" because I cannot think of a better word. Equilibrium? Then came the issues with writing and...

I suspect most pwME would argue it can be degenerative, and at some point (probably early on?) absolutely is - but also in a very peculiar manner, can halt its downward spiral, or continue after the wrong provocation to plummet. I know for a fact my first eight years were a constant downward...

Some, but only some. ETA: And how did they shoehorn that into neurology? We have more than what we did before DecodeME.

Fair, but ascribing channelopathies to neurology seems almost capricious. How did they pull that off? Some PP researchers like Tawil did have genetic references - as we also do now. If those researchers can stake a claim, maybe we should be doing the same.

I am concerned about the practical ( e.g., insurance and treatment) and cultural implications of a neuropsychiatric heading. Channelopathies, which certainly resemble ME/CFS, fall under a neurology umbrella. They are considered neurological, not neuropsychiatric, even though cognitive and...

We need more ME/CFS brain autopsies. How many have been competently performed in the last almost half century? Moreover, we don't just need pathologists that have a good idea of what they are looking for, we need to ensure they don't find only and precisely what they are looking for due to...

What does Syphilis do to brain cells universally? As opposed to what can it do to brain cells. For instance, tertiary vs secondary syphilis. Maybe looking hard at a fairly known brain infection might be a decent starting point. It needn't be an infection. Brain cancer might approximate some...

That's a giddy refrain. I feel better.

I spent the first half century of my life believing diagnostics were trustworthy and authoritative and final. The last two decades has seen the slow unraveling of that belief. The most recent five years, a desolate realization has breezed over me that, diagnostically speaking, we've been had.

I wonder if this claim that POTS is apparently overwhelmingly a female disorder is accurate. I'm male and I have POTS.

By my sloppy math, at least one third of these Lyme authors has a vested or historic interest in Lyme vaccines. When money matters in medicine, we should watch. BTW: What happened to all those Lyme diagnoses in the late 1980's that got undone by 1995? Many, by virtue of Lyme leaders at that...

In LymeWorld. the Rat Fink factor wields a lot of influence. It's like Clavell's King Rat: Money rules. Medicine has been breached, and the Marginot line is/was Lyme and babs and rickettsia. And yes, ME/CFS.

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...