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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...

For @Little Bluestem (and anyone else who couldn't view the poem using the twitter link) here's a youtube version that might work. Video is only 1 minute long. Jen is shown at about 0:35.

I got some email today from the The Trans-NIH ME/CFS Working Group. (I guess I signed up for their mailing list but had forgotten all about it) ===== start of mail ===== We request your participation in a telebriefing about updates on NIH’s efforts to advance research on ME/CFS. The...

Bumping this thread ... not sure if I'll watch but some might be interested. Thanks to @MErmaid for including the information in the previous post.

[note to moderators - should this be a new thread? it seems off topic but then I notice that some threads tend to wander a bit, so it may be okay?] Thanks for your reply. I realized after I posted (which is why I added the edit) that things can be more complex than they seem at first glance. I...

Wow, I hope that it is obvious that this forum is not meant for handing out specific treatment advice to patients! :nailbiting: I'm kind of surprised that anyone would think this. I hope we can discuss our own symptoms and personal experiences without having to write a big disclaimer "I'M NOT A...

Thanks for the post, @Sly Saint . I've never read that book but I do remember reading the article by Toni Bernhard. It's somewhat of a tangent but that phrasing - in the kingdom of the sick - reminds me of this quote by Virginia Woolf: And I recently read another book coming out soon called...

For those who aren't on the email list, the Solve ME/CFS Initiative group has updated their website. Here's the announcement from their mailing list: I only looked at it briefly but at first glance it looks better.