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That's the one: "We prefer the definitions of recovery we used to those used by Wilshire et al. as they give absolute rates more consistent both with the literature, and with our clinical experience."

RE: this quote -- "As patients undergo more tests, they will focus on a laboratory abnormality and subsequently find researchers interested in studying these abnormalities". 50 Jumping in a million years later, that quote cited from source 50 stating that is not actually in that source. I just...

One of the people discussing neuroinflammation in ME is Mike VanElzakker, whose speciality is neuroscience. While it's possible he's using the term incorrectly, it's unlikely. And if he is using the term in its correct sense, it's unlikely he'd change it because 'neuroinflammation' isn't...

Looks like I've got some thread-reading catchup to do!

Also a carrot.

I can't think it matters to them. They have painted themselves in victimhood and must generally believe it to do what they do. They must also valorize themselves in order to make this sort of behavior acceptable, even within their own minds: proud warriors for science, standing against the...

Siiiiiigh yes.

She was, in fact, out for another reason: she was at that clinicians' summit. So I did receive a reply... I've got to work through what was actually said and come back to her. But I wanted to let you guys know.

Well there was that Tribunal that one time. :rolleyes: I remember reading that and being honestly a little shocked at how OPENLY dismissive the ruling was re: claims of harassment in particular. I had always thought that there are nutty people in every population and that it was totally...

Not off-topic at all! And that's precisely what I mean -- they probably have shared some things in articles and conferences ahead of publication.

....huh. Actually it works both ways. If you have done something terrible, also accuse the other side of having done precisely that. Looking forward to hearing that we've been gaslighting them.

INTERESTING YOU SHOULD SAY THAT. My research says, when the 'old way' is challenged, two things happen: Change the tone but not the heart of the message ME is totally 'real'! It's real to the patient It's not malingering ...but mysteriously it should still be treated precisely as though it...

Precisely what I asked for in my first email. Then I added that more context would also be fine. The idea that the CDC removed these treatments because there was some "confusion" around them implies, whether Unger meant it this way or not, that the confusion is on the part of patients. That...

Researching this sort of thing is about 5-10% of my time lately. It's about our fight but it's also interesting to me because we are currently mired in propaganda and anti-propaganda efforts in every aspect of our media-saturated lives. You know me, I love that they're calling it Defense...

I would be inclined to agree with you. However, I sent a request for clarification 10 days ago and have not received any response. She may be on vacation or out for some other reason. I sent another email today. I mean, definitely. Friedberg wrote an entire screed on how the UK BPS...

Thank you!

I also expected it to be more... something. To have something to it. Instead, it was empty of logical argument and mostly consisted of playground-level nonsense. But playground taunts stick in the brain. We're countering not arguments at all anymore, but propaganda.

It's strange how often it's the "overlooked" aspects of a drug that turn out to be meaningful. I took ornidazole and it (briefly) restored me to perfect function. I went for a jog. For awhile I thought it was its anti-fungal, anti-microbial properties but now I'm not so sure. For instance...

That's what the original article entailed. [Edit: everyone here has been really supportive of #MEAction in general and me in particular. And I still wish we could do more.]

I've never heard this phrase but I really like it. And yes, our issue is almost always that people have excellent ideas but we aren't a wealthy community financially or energy-wise, so they present them in hopes someone else will pick them up... or choose to spend energy on debate when they...