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Since my previous message is so long I thought I'd add this "getting started" link :) http://millionsmissing.meaction.net/get-started/ It provides a better overview than I did!

@Mike Harley Congratulations!:emoji_blush: And another £1000 for research! :emoji_heart_eyes:

Hi folks, I just got off a planning call with ME Action volunteers about how to coordinate #MillionsMissing events planned for May 12th. I was encouraged to register an event with ME Action. I learned that even though all I am going to do for May 12th this year is take some photos and share...

Since I haven't seen anyone from the USA post a comment I thought I'd say that this link worked for me. I only listened to a few minutes. I often have trouble absorbing information in audio format so I probably won't listen to the whole program.

I don't think I have this problem (a few minor stomach and intestinal problems but very minor compared to the symptoms that are disabling). But I saw this information from Dysautonomia International so thought I'd pass it on: https://twitter.com/Dysautonomia/status/984512915645632512 For...

:balloons: Bravo, and thank you, @Mike Harley ! :trophy@ Every time I see a photo of you holding up that banner it puts a big smile on my face! :D

The MEAction website has info on how to set up or participate in #MillionsMissing protests on May 12, 2018. https://millionsmissing.meaction.net/get-started/

This looks great and I appreciate all the work being put into planning ME/CFS Advocacy Day! I won't be able to travel to Washington, DC. But I'm looking forward to participating in other forms of activism on May 12th. :)

For those on twitter: https://twitter.com/RogueMamma/status/977782262379962368

This CNN article profiles several people who were unable to march (for many different reasons) in Saturday's "March for Our Lives" protest but who supported the movement in other ways. The second profile in the article is about someone with ME/CFS. I'm thrilled that this CNN article...

What I always find missing from these kind of pieces about learning how to live with ME is that they so often completely omit financial issues. I know that these are complicated issues, and few folks want to read details about SSDI vs SSI (benefits programs in the USA). But the issue of how...

Whoa! Considering that some studies have shown low blood volume, how did you have any blood left in you after all that? ;) But seriously, thanks for sharing the photo! :)

There's also a new app that I read about that rates accessibility: https://www.thelily.com/a-yelp-for-accessibility-the-app-thats-trying-to-change-the-conversation-about-disability/ https://www.facebook.com/AccessNowApp/ https://www.facebook.com/AccessNowApp/ I have no personal experience with...

@Arnie Pye I used google to search for EEG photos and quickly found this page with a similar photo: https://thelizarmy.com/2011/02/from-beginning-to-end-this-was-my-eeg-experience/ Of course, her photo is not in the same league as Jen's when it comes to the quality of photo (composition...

I got the impression that she was planning to make films on other topics. But I could be wrong.

I think what you're describing here is a symptom I've had since the very beginning (illness onset in 1990). I get these small muscle twitches all over. Often they are on muscles that are not under clothing, and can be seen (arms, face), so that's why one of my doctors saw them and told me they...

For folks on twitter, here's a link to a tweet by @Tom Kindlon that you can re-tweet to spread the word:

I'm not sure how much sleep I need ;) but I get between 7-8 hours with lots of awakenings (see https://www.s4me.info/threads/sleep-poll-do-you-experience-insomnia-or-somnolence-with-your-me.2750/page-2#post-51614 ) I do spend a lot of time resting. I lie with my feet up (in my recliner) most of...

This is pretty close to my own onset pattern. Really bad flu-like illness in late December 1989. Then I thought I was recovered and went back to work after the new year. Sometime in January 1990 I started getting dizziness, lightheadedness, feeling out of breath. Over a period of 3-4 weeks I...

Thanks for posting that link, Andy. This is one of those fairly short articles that I find helpful to share with friends/family who know very little about ME. I liked the parenthetical comment (which I've bolded) the author added about about PEM: There's also a nice quote from Carol Head from...