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One time I was having either a migraine or a stroke. Not only was I getting the characteristic visual aura, I was having trouble speaking and my right hand was tingling. Because three separate nerves supply the hand, but most of it felt funny, I knew it was central, not peripheral. Instead of...

The mainstream view is that autism is a pathological condition and should be treated. The autistic advocate view is that autism is a normal state of existence, but that mental problems that cause serious trouble functioning can co-occur and should be treated. A very crude analogy might be a...

They're very misinformed. Long Covid is a huge spectrum and symptoms can range from annoying to debilitating. ME (at least by IOM criteria) has a minimum severity, it's always quite debilitating.

I agree with you strongly. Most disabling or most burdensome symptoms would be better. Medicine has a long history of dismissing post-infectious illness. Perhaps more broadly, they dismiss illness that aren't likely to kill you.

I wonder if it could help symptoms if someone has orthostatic hypotension. But obviously raising blood pressure willy nilly is a bad idea.

That's somewhat sad. I'm anticipating your results because I'm hopeful we'll learn a lot from them. It might be the second major event in ME/CFS history since I became familiar with the disease in 2021 and saw the publication of the new NICE guidelines.

I'm convinced brain and nervous system autopsy studies have real scientific potential. I strongly agree with Sid in that not studying this earlier is a massive failure.

I definitely empathize with doctors who can't help their patients because treatments are not available or because circumstances mean the patient can't take care of themself. I'm pretty my problems have made doctors feel frustrated at times, not just with ME but several other things that lacked...

I think you might need another questionnaire for that.

Neato. But I tend to avoid attaching myself to any one hypothesis of long Covid, so who knows if it will work.

It sounds like you could learn a decent amount about supporting young people with ME/CFS from this study. Obviously it's generally difficult to accommodate because without energy you can't do anything, but I'm sure a decent number of people out there will be able to explain how they managed to...

Few to none of them have severe ME because they couldn't participate in whatever research we're doing. Almost all of them have experienced significant grief/loss related to their illness. And medical gaslighting. Most became ill between about 15 and 35. Almost all of them have alcohol...

This is a racket.

It's embargoed until next year so I don't know.

If they just used machine learning, and don't have separate training and validation datasets, it could just be overfitting (looking at irrelevant differences)

We need a drug badly and we should try anything.

"Rhythmic power washing in the brain" sounds rather dangerous.

In ME Assoc: How Many People in the UK have ME/CFS?, Simon M said: Wow, if 100k Brits have a diagnosis under G93.3, that means DecodeME managed to scoop up almost 20% of the entire population with ME. I don't know how often researchers try to recruit a significant fraction of all eligible...

I don't know if it will show anything, but it sounds worth investigating.

It should be illegal to operate on a person's genitals unless they consent, or it is medically necessary. This includes pelvic exams (not surgery but broadly similar), sterilization (which has been done non-consensually in the past), circumcision and other cosmetic genital surgeries, and...