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I'm sorry. Isn't this just a silly fancy way of suggesting that how we feel is incorrect? That we only think we are sick, that a faulty sense of feeling shitty ,and its timing, is merely that: misappropriated perception?? We only feel sick; we really aren't? If there is a pathology, it's in the...

I have a high regard for you, but I think we both know what you're saying here. You have no clue, nor should you. So you shouldn't be trying to discredit their diagnosis.

Sorry, this seems garbled, but it's late for me. Regardless, you hopefully appreciate that those most likely to be seeking medical shortcuts and bullshit explanations are medical professionals? Patients are looking for real sustained solutions. Not sure about heds, I don't study it, but I know...

P Please allow me to make a small but important distinction: In some of these cases we can quite simply state that these people do not have these diseases. In many others that cannot be claimed. And if you are on the receiving end of crap diagnostics, and a lack of meaningful treatments...

"The main issue is that if patients don’t actually have these diseases, the workup is concluded prematurely. They obviously have some explanation for their symptoms, it’s not good to stop at the wrong one and investigate no further" This strikes me as over-the-top optimistic as to what actually...

Seems to me that once a medical professional throws tick-borne diseases like Lyme into a disease mix, we veer away from medicine and more into politics. It's been my experience that a large majority of clinicians and researchers have no real clue - they frequently merely mouth sound bites they...

Too many clinicians look at anything online as bad. Some of it is. Some is good and even valuable. Relative to many of the diagnoses arrived at online not being accurate, same can be said about clinical diagnoses made by doctors. This truism is amplified when inadequate diagnostics are in play...

This looks like it took a lot of time and effort to piece together.

I suspect that there are some of us that were entirely asymptomatic except for PEM (and that at relatively low intensity), in the very early stages of the disease. I'm talking the first several months, maybe even year or two. Of course, this would likely be mostly restricted to those of us with...

I appreciate your point. It kinda feels like an own goal. We ARE talking about info from institutions like the NIH and CDC and NHS, at least in so far as they inform advocacy positions. So yes, your observation that there is widespread access to poor quality research applies even more so to...

I fear Covid will be disarmed as a potentially disabling infection much as a fellow pathogen - Borrelia - was.

Patients have been poorly informed for hundreds of years. Thousands. It's part of being a patient, of them being doctors - there's a cultural as well as an information gap . It's only since the advent of the internet, and widespread public access to higher quality research, e.g. directly from...

Possibly because most medical professionals are either clueless, or know just enough to realize they'd be exposed as inadequate by an increasingly informed patient community.

Interesting that most of the "diagnoses" in this article are questionable real diseases or part of the "sick tok" list of common conditions everyone can find a forum with evidence they "have." Remind me what too many air quotes signify? Honestly, fine. In the outpatient setting, when AI glazes...

Excellent Blog. I just wanted to throw into the mix a concept that may have some relevance. Immune tolerance, in theory, at least, is a well-established concept, dating back to the 1950's. It's perhaps most familiar in situations involving pregnancies, and I think it received some renewed...

I'm not sure what the authors mean by primary determinant, but I was diagnosed with OI years before I was diagnosed with POTS. Each diagnosis was made by separate well-known ME/CFS specialists. POTS was made after four days in hospital, with staff checking HR and BP after standing like once...

Where do things stand right now in Lyme World? Things are tribal. Everyone sticks to their own group, their own beliefs. Newbies come and have to sift through scatterings of propaganda and science. Then they have to make a judgement that is sure to be based on incomplete data. Before I got...

Updating Lyme World is akin to updating US politics: It's massive and unwieldy and goes in countless directions. The Science has inched along, but not the diagnostics. We know antibiotics often fail to eradicate Borrelia, but this is hard to prove with today's diagnostic menu. We know some...

I will tackle this in the morning, I promise.

Oh dear. ::} It is too late. Maybe tomorrow? This is horrifically wrong. This is glaringly wrong, like Wesley or short. .. BTW: Hutan, you rock in my eyes, but im just too exhausted..