Not in the slightest -- I mean "my people" as in "all pwME". Specifically I am referring to harm of people with severe presentations in this...
To the contrary -- I am saying that we are, in fact, potentially the same. If people with severe presentations want to participate in research, I...
Lots of reasons, none of which are helpful to us. It's rather dizzying actually.
A lot to say on this. pwME w/severe presentation have a hard time engaging Because it's so tough to get severe pwME to engage in studies --...
Ahhhhhhomg okay. So prevalence CAN BE DONE RIGHT in a disease like ME! I found the CDC's four-year prevalence study for autism, started in 2014...
I don't ever have periods where I feel normal again. Despite the damage, I feel I 'worked around' it. I don't think in precisely the same manner...
The white matter hyperintensities seen on my MRI imply damage, albeit of a very mild stripe.
I think it says "provisionally accepted" and "will be published soon".
Lenny Jason did this exact thing -- prevalence via phone call is sometimes the best you can do when working with vast swaths of people. Many of...
I had some ME-like symptoms in adolescence though it was never diagnosed as such. One was that I yawned all. The. Time. Three in 15 minutes?...
Same. Given the group, that seems odd. If I had to guess, I'd say they had referrals from a doctor who still used Fukuda.
Credit where it's due: quite a bit of this is Rivka's work. [Edit: LOL threads were merged, so now it seems as though I am reminding the...
CDC has a prevalence study underway?
I've had this thought before, too.
As I just said on the Other Forum, I wondered if @leokitten had looked into respiratory acidosis as a potential cause.
Relevant to add that EBV is an oncovirus, and that herpesviral infection (of which EBV is one) is one of the most well-documented triggers for ME...
Possibly? But that would be an unusual response to oxygen being low, right?
In ME, there was that study of Jason's that found much earlier death from cancer. Whether that's NKC dysfunction or patients and/or their doctors...
How was I not on this thread but somehow simultaneously having this exact conversation? I feel like we're sharing some kind of hive mind...
Yes, and I'll also 'forget' to breathe. You go, "oh, yeah, I should probably take a breath 'round about now." This strikes me as autonomic.
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