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In the US, most insurances will pay it, in Europe they won't (I don't know if private insurances would, though). And yes, these kind of surgeries are very expensive.

Maybe there is missed knowledge, because Jen had a diagnosis of ME and then CCI was found, and a CCI surgery helped. Obviously something is missing. So there's some theoretical stuff, and then there's an observation. Observation and theory don't fit, so there needs to be some work done, like...

When lying I have a BP around 90/50 - 100/60, pulse 40-60. When upright, though, BP rises to normal and pulse up to 140 (but I have hyperadrenergic POTS). My cortisol is low-normal (low in the evening). If I understood correctly, in CBGD cortisol is often low-normal, not low. One can speculate...

I've just realized there was a thread discussing a paper about corticosteroid-binding-globulin deficiency: https://www.s4me.info/threads/review-a-role-for-corticosteroid-binding-globulin-variants-in-stress-related-disorders-2014-marathe-torpey.8308/ I (re-)discovered that thread after I decided...

Not understanding that they wouldn't be doing individual advocacy. But I think they intuitively grasp how difficult it would be to take that path, although it would be an effective path.

Maybe that's a good idea!

Yes, mild ME is severe for most people.

I agree with the 9-5-part - the "good" people go early to bed and get early up; the good people are disciplined. Personally, I think that's part of the ideology that is behind sleep hygiene. Even if I were healthy I'd reject that, alone on these grounds. Additionally, my experience as a healthy...

Ok, sorry!

This is not what people were saying in this thread.

My guess is that you will find a pattern in a study that looks at everyday-life. Every being has patterns. And nearly every human being creates some day-to-day routine. My guess is, since pwME experience comparable symptoms (in different severities), that they will develop groups of similar...

You can get a (probably clear) pattern from observation alone. I agree that sometimes observation doesn't give enough information that is needed to find a pattern. In the first step the aim is not to help (with the exception of severe ME where basic help is required), but to observe to possibly...

My takeaway from this thread and from my own experience is there should be no plan on a pwME, especially not on severe pwME, and so no trial with such an aim, at this point of time where information about what might improve and worsen is unclear/uncollected/ambiguous. As a first step, I think...

I'd suggest to not do any GET/CBT trial on ME patients.

Actually this decsribes in a much better and clearer way what I thought when reading this thread. I hope I understand the idea, and if I do, I think it makes sense. But one needs to remember that experiments can worsen a being's state. Since the example of sleep was brought up: It seems some...

I think the NIH study "Daily activity patterns and heart rate variability in ME/CFS" is doing something like that?

They only accept US participants. In the very friendly reply it was expressed that they hope to help people with "chronic fatigue".

Isn't that "cheating"? I.e. I expect a better result than with the grip off the leg (because you will build up pressure against the leg). In my case I held the grip at my side - no place to put pressure on than the grip itself.

:laugh: That's funny - and embarrassing for the author. But surely this needs to be viewed more differentially, like it's unhelpful to pretend it's not happening and helpful to pretend it's not happening. (Sarcasm)

This is my experience, too. I also have muscle weakness during and after activity, only afterwards it's worse (obviously), and during PEM, too. For me, personally, problems in energy metabolism (as a consequence of sth else) makes sense.