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And why do people keep using such out of date references? In the very same journal there is an article on the WASF3 protein (just presented at NIH!) that's doing something bad to muscle mitos. And yet this author is using a paper from nearly 30 years ago to say there's nothing wrong in the...

This is new, isn't it? I thought most papers were pointing to microvascular and clotting problems.

The UK Kidney people say something similar about not using race in calculating GFR. https://ukkidney.org/sites/renal.org/files/guidelines/Rationale_and_recommendations_for_implementation_NICE%20CKD%20Guideline%202021.pdf

In the US, "innate differences" was part of the justification for slavery. How many of these were manufactured and not really innate is the subject of Medical Bondage, which tells the early history of gynecology in the US. It's an ugly history and much of it is about controlling enslaved...

I just listened to this webinar and was impressed by the doctors. What did people think? I looked at the UCLA website myself and was worried about the outdated info about diagnosis and treatment.

And really, the philosophical alternatives to dualism are much more interesting, albeit harder to conceptualize. That's why I think dualism remains so popular. A mind body interaction where there is just one thing that feels like two things is so much harder to grasp.

Isn't that the truth! You know, a long time ago before I got sick and still had a working brain I did a degree in philosophy. Every time I read this stuff it just sounds like such a misunderstanding of mind vs body, which philosophers have worked on for centuries. I mean even something really...

But if FNDs are now recognized to have biological factors, doesn't that mean there is organic disease and therefore that they are not FNDs? Also, they are overstating the prevalence of FNDs, aren't they?

Welcome to the push crash cycle!

Me too. There are some of my symptoms that are always maxed out. It looks like stability, but it's certainly not doing well. It was hard to know what to score things when there's a constant decline. The symptoms I scored as severe months ago now feel moderate in comparison. I also think...

Yes, the accuracy of the morning stability score is the biggest downfall. I've had similar problems myself. I think there is a construct analysis issue between stability and good pacing. The point of that morning score is "to measure your pace for the day ahead", no? But it doesn't...

That definitely makes it challenging! Sometimes if I want to know how badly I am doing I would do a morning score on no sleep. Other times I do it when I really wake up. For example, if I don't fall asleep until 8 am, then I would do my morning score at 1300 when I did wake up for the day...

It doesn't have this functionality in the Visible app, but may with other apps. Visible asks us not to use this armband with other apps for just this reason. It doesn't work. You would have to buy another polar armband if you want to connect with another app. I use the garmin body battery as...

Yes. Pace points are calculated using data from the Workwell Foundation. The app calculates whether you are at rest, in exertion, or overexertion based on your resting heartrate and the Workwell research. So it's sort of like getting to see the people at Workwell without being able to go...

It makes total sense as it's what I've ben experiencing. So many activities make me feel bad and the badness lasts for so long that I can't tell which activities are the most harmful/taxing except for the really big ones like leaving the house or taking a shower. I am mostly confined to bed...

It's not exactly telling me something I didn't already know, but it is making me pay attention to it. I have a tendency (don't we all) to push through when I shouldn't. Being able to see data objectively forces me to pay more attention that just feeling bad. It's also confirmed some...

I am really liking this gadget. Not only does it do heartrate monitoring, but it will count your spoons for you! I can see exactly how much a given activity takes out of me and I'm looking forward to creating an energy budget.

When is a flare up "Drop your activity levels, but do not go right back to the beginning unless really necessary." So.. when I am too weak to feed myself and my mother has to spoon feed me, I will definitely try not to revert to the zygote stage!

"If you have severe or very severe ME/CFS any increase in physical activity will have to be carried out in very small amounts, preferably..." Increase in activity?! I have to ration the numbers of times I brush my teeth. It's a nitpik, and there are good points... but it still feels a bit...

I am so confused and upset by this whole weird interaction. Mostly, I don't understand why the FND patients are getting offended when Putrino says LC isn't an FND. Why would they be offended that other people don't have their disease? I am not offended at the people with MS that I don't have...