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Also, anyone can call their senators, not just folks with ME! I'm hoping to recruit some friends and family members to make more calls.

By the way, the call script says "If you are up for it, you can even call each day during the week and repeat the same important message!" So I hope to make calls again tomorrow! :)

Most of us are not able to go to Washington, DC for this advocacy week. But there are still ways to make your voices heard! Today I called both of my senators and then tweeted about it: https://twitter.com/ahimsa_pdx/status/1113509333101187073...

@WillowJ I found a site that lists many brands of toothpaste without SLS (sodium lauryl sulfate): https://slsfree.net/sls-free-toothpaste/#sls-free-toothpaste-brands I know you did NOT mention SLS-free as a requirement but I thought I'd pass it on just as an additional list of options to look...

Short answer: I only use toothpastes without sodium lauryl sulfate (SLS). I don't seem to have sensitivity to any other ingredients. Brands that have worked for me include Spry and Sensodyne (Kroger makes a generic equivalent that is cheaper). It can be hard to find a toothpaste that includes...

Bumping this so more folks will see it. Deadline is Wednesday, March 27. If possible, ask your friends and family to contact their US Congress representatives, too! I will be working on email to several family members later tonight. I sent email to my Congress rep and then did a follow-up call...

ME Action has published a press release from the Workwell Foundation: https://www.meaction.net/2019/03/23/analysis-shows-blunted-heart-rate-contributes-to-activity-intolerance-in-people-with-me/

I don't have any more information, and can't answer the question asked by @Snowdrop - but I thought I'd post a link to a news article about this paper just in it has any helpful information. https://www.sciencedaily.com/releases/2019/03/190318084127.htm I thought this was a good sign (so many...

I actually remember this study (Yay, my brain actually worked!) because I often link to the MEAction article you wrote on it: https://www.meaction.net/2016/05/09/study-housebound-versus-nonhousebound-patients-with-mecfs/ Here's a link that goes directly to the Jason study...

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 It was published in 1999 so some info may be out of date by now.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...