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I changed the color of what's required -- hopefully it's clear now without putting (required / not required) next to everything. For reasons of cognitive dysfunction color is more recognizable than ensuring everyone is catching the word 'not'. Whoa, great minds think alike, I guess. :thumbup:

Good MORNING everyone! :hug: It's done, now reads: "To sign your name, please fill out the form below. Anyone can sign – patient, caregiver, ally, researcher, clinician – in any country. (Note: any data entered may be public except for email addresses and postal code, which will not be...

Yup. It's a survey!

Was this the first conference on ME/CFS in Canada for 30 yrs? I seem to recall someone saying that.

I get the same in the opposite direction. I show muscle tone in legs and arms and hold down a FT job plus 'side gigs'; a clinician would have a very hard time making the argument that I am 'deconditioned'. But I have symptoms every day, and certainly crash -- if I go above my activity level...

Maybe add a poll?

8.5 give or take.

Or pacing! :thumbup: Good to know for purposes of advocacy that this is happening. People may not understand our objections to GET if it was pacing-but-called-GET that they personally experienced (or that, as a clinician, they personally use). Thanks, everyone.

So, I encountered something unusual and was wondering if anyone else had as well. I was talking to someone from Australia who has a sleep disorder, and she was talking about graded exercise therapy that she'd been given for her issue. I started to protest that GET doesn't work in all...

If only I could grab a handful of you and start up a lab. :hug: I'm always struck by how clever and clear-headed a group this is... Which, given brain fog issues, may be more of an indictment of the rest of humanity. :banghead:

I'm saying that, based off of those numbers, they don't have a leg to stand on. Did have a bit about recall bias, but deleted it. Went looking for studies about recall bias in childhood trauma reports, and needless to say there weren't a lot of people keen to invalidate/cast doubt on work...

The prevalence of adverse childhood events is at about 50% which is also the incidence of ME. :whistle: I realize they're saying it contributes to, not that it causes, but still. It would have to be a VERY minor contribution for adverse childhood events to cause ME in less than 1% of the...

No, actually. I saw it. But as a patient, I did have to get up and walk around a lot or my legs would go numb. (Ah, the wonders of ME circulation!) So it's possible I missed that sentence.

#MEAction generally tries incredibly hard to get this out there. Asking them now if / what they need, will post here when I get an answer. [Edit: @Sly Saint here ya go: https://drive.google.com/drive/folders/1fH9WNCCn3KfBb0R-_NkOOlNJBaWy9ATc Take a look at what's here, everyone! To some...

First: 100 cities. 100 cities. 100. It started as twelve. Watching the cities flash past at the end is an emotional experience if you watched the twelve flash past far more slowly the first time around, the 24 the second time around... <3 <3 <3

Oh, dear.

Interesting! Tweeted. :)

Not to the degree I was expecting. I NEVER heard any patient-blaming, and no one was talking perfectionist tendencies OR laziness. It seemed to be between people who thought the disorder was caused by long-term stress (including infection, maybe), and people who thought psychological stress...

Me, too. It did seem like the preponderance of the unhelpful narrative was weighted on the clinical side (which is worrying for patients). I, too, hope they stayed for the whole conference and really listened rather than just forming arguments against. Multiple times I passed people by the...

Retweeted that Reader's Digest article -- glad to see myths are being debunked even in articles written for the layperson.