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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 sentence, the opposite of what you've concluded here. Severe patients stand a chance of incurring serious harm when they participate in research, and...

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 hope that they will. At the same time, I am not sure it is necessary because I am not sure that severe patients are unique, and I know there is a...

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 -- that's a good part of the problem. The population you're talking about is often too weak to engage. pwME w/severe presentation cost more to engage ($...

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 and finished up just last year (a four-year study). Here's how they did it: First, they connected with state and local governments in order to get...

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 I used to. I've spoken to people who've known me all my life, and they agree. It's enough to imply a re-mapping process, at least to me. I don't...

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 them met the criteria for CFS that he had created using his epi survey, even though they had not been diagnosed. I've been thinking about this myself...

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? After high school let out, my mom driving me home commented on it frequently. We're talking multiple yawns the whole (15 minute) ride home: 5-10 on...

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 community: RIVKA. And BTW, all the Massachusetts team -- it takes a village for a project on this scale. Well done, everyone!]

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 onset.

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 chalking up other symptoms to ME is a good question. Nothing to say it isn't a little from column A, a little from column B.

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.