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All dependent on how each study defined LC, usually poorly. This approach has yielded nothing and most professionals don't believe in prevalence numbers because they're all over the place, and the rest is generic, or as they like to say when convenient: non-specific. I can't believe how much...

Ironically, yes. But this is like Aunt Lydia (The Handmaid's tale) writing about how handmaids are a feminist issue. Yes, they would be, but this is the perspective of the perpetrator, not the victim. Which makes this extremely creepy and just hits all the damn banality of evil buttons. This is...

Time and technological progress. Medicine did not easily let go of the Humors either, is basically still struggling with accepting the germ theory of disease. Progress at the pace of funerals. Outside of technology, barely anything matters. Once the technology is ready, it forces people to...

It's a massively expensive process that only works in some contexts. I don't think it works outside of drug development at all. We can even look at examples where it technically went though the process, but the evidence is very unreliable, in the form of SSRIs. The biology isn't known, either...

I think that the last few years have made it clear that pragmatic trials without a theoretical foundation are completely useless, and probably harmful because of the huge wasted opportunity cost (decades wasted on CBT-GET means having given up on real research all this time). RCTs are useless...

Given how much they hate us coming with prepared notes, I wouldn't count on it. It would help us communicate, but probably not with being listened to. But it will be massively useful as a medical assistant before seeing the physician. What will make most sense will be having 24/7 access to that...

The main options I can see are in the "dumb phone" (as opposed to smart phones, mostly means no touch screen) category, but are those old-style keypads OK? Not many with full keyboards and it makes them bulky. One option could be to have two phones, with only one of them with a mobile...

The frequency at which I see testimonies from LC patients saying they ended up severely ill, bedbound for months or worse in some cases, after following advise to exercise and push through is seriously shocking. It's pretty much one of the most common comments I see. If it were possible to...

Then accessible phones are probably the only option worth considering. I don't know enough about them to be sure what could fit, sensory issues aren't generally considered in terms of accessibility, but difficulty typing is definitely up there. I'll try and do a bit of search on this, although...

I think maybe we're just not seeing this from the same perspective. I don't see this as an evidence-based type trial for this particular treatment. That process is generally worthless and frankly I wrote if off entirely as likely to produce anything useful. Simply asking about symptoms is also...

Imagine knowing less than a chatbot... about your own job. I wonder what the sources are for this. Because for sure if it can read sources saying this, it can read sources saying all the woo stuff, which are numerous and authoritative. And all the published research. It just doesn't think much...

This process you are describing has yielded exactly nothing in decades. So I don't think much of it. Hasn't even produced a single bit of useful data in basically dozens of similar conditions and barely delivers anything in general. Medical breakthroughs are made in labs, not because of a...

Oh, they can. For decades. Well-documented, even. In fact, it's literally happened again. The same way. With the same arguments: it's so easy. They even say it out loud: it's so easy to just flush those patients down the drain because it drains out in darkness, on purpose. This is the "shadow"...

Yeah actually this is a huge point where it's also the exact opposite of us: most of the autism community, that I can see, does not see autism as a disease, it's not something to fix. The medical community sure does, however the framing has slowly adjusted. And yet ME is clearly a disease, but...

This is why they are fighting us like their whole career depends on it, because it does. We are the first to break through the wall they built for decades, in part using us as foundation. Like an empire that has crushed rebellions for decades and finds itself losing its first battle. By...

Any claim lacking real world evidence can be dismissed without evidence and there is no evidence for the mythical conversion disorder, it was always as imaginary as the humors. It should not need evidence to be disproved, Russel's teapot is not assumed to be there unless not found and people...

Some fair criticism but the economics of jumping to RCTs will never work, this is not how to do research. Research is a process. No one starts a research process with a massively expensive later phase methodology. Actual research is different from the BS "pragmatic" approach of "let's try...

You can almost feel the condescending pat on the head.

Interesting video with lots of overlap with us, although some of it is the exact opposite. I have been noticing that, generally speaking, things are just as dysfunctional in autism research in terms of conflict between perception and reality. It's the exact same story of not listening to...

Symptoms can only be self-reported, but they did validate reduction in the clots. However accurate this method is at identifying and measuring them, the method is seeing that reduction. Lack of controls is an issue but the numbers are massively above even natural outcomes for remission and...