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I read a book some years ago called Phantoms in the Brain (by V.S. Ramachandran and Sandra Blakeslee) that discussed phantom limbs and many other neurological issues. It was published in 1999 so some info may be out of date by now. With my bad memory I have forgotten most of the book but I...

This is not specifically about sleep but this chart shows that the menstrual cycle does make symptoms worse in many ME patients (click to enlarge image) link to tweet https://twitter.com/TomKindlon/status/1094380384593330178 More detail in this post -...

Same for me. Overexertion always leads to worse sleep. Resting for a few days makes my sleep better (not great, but better). But I didn't vote because the poll is about falling asleep. I never have trouble falling asleep at night. [ Well, almost never. Very rarely something will keep me up but...

Moderator note: Merged thread. Americans take the pain of girls less seriously than that of boys, a new study finds https://www.washingtonpost.com/nation/2019/01/31/americans-take-pain-girls-less-seriously-than-that-boys-new-study-finds

For those who missed the link the slides are pretty good. I liked the warning against CBT/GET (printed in red, no less) on this slide:

It's not really a thank you, it's an advertisement for her business. It even includes her website. Pretty shady if you ask me.

The Johns Hopkins patient handout on Orthostatic Intolerance (see http://www.dysautonomiainternational.org/pdf/RoweOIsummary.pdf from the Dysautonomia International website) says that a patient can be diagnosed with either NMH (Neurally mediated hypotension), or POTS (Postural tachycardia...

A quick update -- Good news: Captured an SVT episode (supraventricular tachycardia) this afternoon with my Kardia gadget. Cool to finally have ECG of what's happening! Bad news: This SVT episode lasted about 45 minutes - pretty exhausting to have my heart beat at 175-185 for that long. So I've...

Thanks for letting me know, I had not seen that. I was just going to skip to video 6 on Orthostatic Intolerance.

Thanks for posting this list of links along with the length of each video, @Trish Very helpful! :)

I'm pretty sure ME Action started a project on this years ago but don't know what happened. *searches* I found this link https://www.meaction.net/2015/04/12/retire-this-stock-photo/ but didn't know how to see the submitted photos. Eventually I figured out that I should click on the submit...

Bravo @Webdog :thumbup::trophy@

Deadline has been extended again. New signature deadline is Wednesday, December 12 Folks in the USA, if you can, please contact your senators & representatives and ask them to sign. The automated tool at this link makes it easy -...

Thank you! The email I got had a deadline of Wednesday, Dec. 5th (just double checked because I could have messed up cut & paste). I guess the deadline has been changed, which is good! I will update my initial post to show that Dec. 7th is the new deadline.

I got an alert via email a couple days ago requesting folks in the USA to contact their congressional representatives. Signature deadline has been extended (again) to Wednesday, December 12 Email text: Here's the link I found on the ME Action website...

Just a quick follow up post: I ordered the Kardia mobile device. After it arrives (it may take me a while) I'll post an update.

I believe you. And I would never try to invalidate your experience. But there's a difference between the experience of any individual man or woman with ME, which is one kind of discussion, and the overall statistics for men vs. women (and nonbinary? gender fluid? - I don't want to leave anyone...

There's a snopes.com article that talks about the photo that @JaimeS posted: https://www.snopes.com/fact-check/1930s-housewife-smile-therapy/ The article is long and kind hard for me to follow (brain not doing well today). From what I could tell it's not clear where the photo is from. But the...

:laugh::rofl::laugh::rofl: *catches breath* Thanks for my first good laugh of the day.

Thanks so much for adding your experience, @MSEsperanza - I'm happy the ablation procedure worked for you! :) I do think it is probably worth getting this device so I can finally capture an EKG. Then my cardiologist will be able to see what type of tachycardia it is. My SVT tachycardia (as...