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Plus, you're from the US, as am I, not European. Personally I'd reply with something quintessentially American, like a Bugs Bunny balloon cartoon with the caption "What a maroon!", but I realize that we need to be professional and adult. I suppose.

Oh, FFS. Groundhog Day. Again. This medicine reduced to a closed loop, never really moving forward, just thinking it does as it feels its way around its circular path....Patients want to scream at the screen and clue in the stars as to what's happening.

I'd be curious to see a focus group comprised of patients from these GP's. I'd anonymize the GP's names and locations etc, but let the patients read the transcripts. Let the patients read how the doctors had to grapple with the concept that MUS patients might have strengths. Then I'd ask the...

That it takes a focus group to trigger an epiphany of sorts in a small group of GP's that patients are people, too, is terrifying. And infuriating. And cartoonish. But not surprising - at least not to any of their MUS patients, I'd wager.

"A conscious effort is needed to discover patients' strengths." Is it weird that that is exactly what I feel when evaluating most of the GP's I've come across since getting sick?

Pretty good piece. Wish they had written something like "post-acute infection(?) syndrome". Also, this I found meaningless: "The third challenge is that no evidence-based treatment options exist at present for long COVID, resulting in the use of a symptom management approach, which mainly...

Lyme Brain Scan Study (mentions CFS) Some Johns Hopkins neuroimaging findings. Meh. https://www.newswise.com/articles/neuroimaging-study-reveals-functional-and-structural-brain-abnormalities-in-people-with-post-treatment-lyme-disease?ta=home Might be something there. Too small, too limited...

Five decades so far of being doomed.

I'm sorry. :( We need people to protest horrific conditions created and maintained by others. I guess maybe it can be said "within the confines of the law." Matters of sustained oppression are difficult to resolve. I hesitate to judge the actions of one of our own unless that action was...

Sorry. I try not to post as much because I have trouble anticipating how people interpret what I write. Antebellum. I'm afraid it's a US thing. Think "Gone With The Wind". A sort of built in cultural bias that helped sustain slavery in the US decades after it was abolished in the UK and many...

Oh dear. :( Strikes me as maybe just a tad antebellum.

Im sorry I wrote so ambiguously. There have been some good tests (imo) that at least seemed to have merit (one a PCR, one urine-based, one culture-based), but friction from within the system, including competing tests from different earlier patent holders, kept the current testing favorites...

The rehab fan club:

Symptom similarities may not be as remote as you might think. But I agree, it's a jump.

This particularly strikes me as odd. Cohort participants have to have been sick for at least six months. If that is a requisite, then aside from swollen knees - which by no means happens as frequently as many assume - what symptoms would not be subjective? The EM will have usually resolved on...

There are a lot of horses in this race, a lot of patent holders that are in positions of influence - which is imo a drag on progress.

@CRG, this is a very good review. Their conclusion is summed up nicely in the last paragraph: "The limitations of the array of assays and test methods currently in use to diagnose LB strongly underline the need for more research to develop new clinical markers and better diagnostic tests to...

They cannot even do this definitively unless they culture the EM or ACA. Who are the misinformed here?

So what conclusions can we draw from this? Not this. Instead, how about realizing that Lyme diagnostics suck, many people who get sick know this (they are usually not as dumb as doctors consider them), and they don't trust the tests they're given by their GPs. So lets invest some serious...

I'm not sure sitting in the back of the bus is the right way to proceed.