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Who will be the arbiter of which practitioners receive airtime? For that matter, which medical approaches make the cut when in Lymeworld it's still a situation where far too many issues remain unresolved? 2T testing is still a crap shoot, the C6 is falling out of favor, and although there is a...

Good point. I should have written "Give me a historical paper trail, with finger prints intact", instead.

I wonder how this was proven given the existence of asymptomatic Lyme - whose prevalence was lamented by Willy Burgdorfer. Lyme and ME/CFS share more in common than several symptoms. It's not surprising that civilians can get lost in the double-talk and propaganda; clinicians and academicians...

IMO any ire here should be directed at the shambles that characterizes most tick-borne disease diagnostics, Lyme in particular, and the complacency with which medicine at large treats the confusion that arises as a result. It's not patients being gullible. There is Science enough on both sides...

You seem very confident. That is reassuring. Can yu recall being as confident and being possibly wrong relative to neuroinflammation? Since your involvement with ME/CFS on this forum and, in theaory, about other diseases that might be related?

I also get confused. Everything gets topsy-turvey,. I've a link to a layman's explanation of neuroinflammation from the American Brain Foundation. I have no idea if it's correct, but I do believe much that is wrong with us is rooted in the brain - inflammation or not...

Fair. But it doesn't have to manifest in typical fashion, i.e. at the progressive expense of the infected. Take parasites, for example. Perhaps if it's not the virus that persists, or if it is, that it doesn't conform to usual characteristics. Similar to ME/CFS qualities. Of course, it...

I'm simply not sure this needs to be true.

Must? One or two assumptions folded into this logic? :)

When it comes to ME/CFS, solid evidence is in short supply. Hence forums such as this. Far too often, we are "others."

There are many highly regarded ME/CFS experts that would disagree with you. There are a lot of infectious disease specialists that would disagree with you. I'm thinking the way to flesh out these ideas, and maybe even resolve these differences in beliefs, at the very least involves talking...

Yes, one viral reservoir. But multiples that cause the tumblers to lock into place? Pathogen tandems that not just trigger the cascade of symptoms that is ME/CFS, but may help perpetuate it? If DecodeME offers insight into who might be susceptible to being hit by the ME/CFS car, I still want to...

Not necessarily, especially if we are looking at highly specific viral reservoirs. It could be a combination of agents, and why some get sick and others do not goes back to the right combination. These are great points @jnmaciuch. I also agree we are looking at several different pathogens...

My understanding is viruses and bacteria can infect neurons directly. Herpes and borrelia, respectively, would be examples.

Perhaps "diseased" brain would be more appropriate than damaged, although I'm not sure why. My wife damaged her hand when she broke a couple bones in it, but over time it healed and is no longer damaged.

But I fear the brain isn't normal in many pwME. From head pressure and headaches to issues with balance and gait to deficits in multiple cognitive domains, we can sense our brains are in many ways not normal (makes me think of the Mel Brooks line Abby Normal). Does the fact that we have wild...

But it sure can feel that way at times. I wouldn't discount some brand of damage simply because our technology is not up to snuff. Personally, I'd like to see more SPECT efforts, but that seems to have fallen out of favor since the turn of the millennium. Don't know why that particular spigot...

Great blog @Simon M . Thank you. Perhaps someone can help my confusion. I see references to these 8 aberrant genes "causing" ME/CFS. Is that literal? I mean, do these genes create what we call ME/CFS? Do they make us more susceptable? Does everyone have them, but they need to be"switched on"...

Sorry, I've deleted it. Thanks for putting up a better link.

I'd be curious where PTLD fits within this umbrella, or if it even does. If it doesn't, where does it reside? As a disease vs syndrome?