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This looks great! I am in the USA. ME Action did a similar thing to help patients get ready to meet with their local Congressional representatives or their aides. And there were also meetings with senators. I don't remember all the details so forgive me if I get them wrong. It took a bit of...

Did anyone attend the Nov. 12 session? Just curious.

Fair point, maybe I was being too coy.;) But more seriously, I'm trying to be sensitive to anyone on here who still may have strong feelings about the way things went down. Don't want to stir up any bad feelings/memories.

I stumbled across someone who is working on an archive of graphs for various ME issues. Link to twitter account below: https://twitter.com/ME_infographics I noticed that this person is also posting on the "other place" (using a different user name, not same as twitter name). No link since I'm...

This information is from the ME Action website, see http://www.meaction.net/2017/10/30/new-living-w-me-support-group-2/ The November and December schedule for the Living w/ ME Support Group has just been announced: Sunday, November 12: Avoiding Crashes Sunday, December 10: Surviving the...

Here's an idea (one of many) for spreading the word about ME while the film Unrest is getting media attention. It started back in October but people are still doing it. https://twitter.com/MEActNet/status/926583025005101057 As the tweet says, take a photo of yourself holding a sign saying why...

Full blog post - http://occupyme.net/2017/11/01/%EF%BB%BFthe-truth-is-not-always-nice/ Apparently there was a joke(?) in a recent presentation where one slide for doctors doing ME research had the title, "Team Tired." I love the last line " The truth is: You can joke about it after you have...

SolveMECFS posted a notice on twitter about this so I'm passing it on. Dr. Fred Friedberg is looking for volunteers for a NIH-funded study: "Daily Activity Patterns and Heart Rate Variability in ME/CFS." Recruiting from USA only. Email: patricia.bruckenthal@stonybrook.edu More details here...

My doctor told me those were called fasciculations.

I've been sick since 1990. My symptoms have definitely changed over time. I think the biggest change is that in the beginning I wanted to sleep a lot more. It's not like I fell asleep in the middle of talking to someone (not narcolepsy) or anything like that. It's just that I slept more hours...

Thank you for posting the youtube link, @Arnie Pye ! I just watched it. They both did an amazing job! I appreciate that Charles Shepherd elaborated on the more general issue of autonomic dysfunction (not just POTS) along with listing so many of the other ME symptoms. Just to give one...

FYI, I'm on twitter - @ahimsa_pdx I'm happy to like tweets, retweet things, join thunderclaps, use a certain hashtag, and stuff like that. For example, I did a few posts using the #TimeForUnrest hashtag and holding up a sign. Here's my Halloween-themed one: But I'm not good at any...

Exactly. For example, my husband and I saw it together. I was expecting to cry but ended up only tearing up a little bit in a few parts. On the other hand, my husband said he had to close his eyes in several parts. It reminded him too much of all the crap I've gone through. So, even though he...

Thanks! I did it - it was actually quite easy! :) I won't be able to attend myself due to a conflict on Sunday morning with family. But I have attended other MEAction online sessions, and Ben is a really nice guy, so I recommend it for anyone who is up for it.

On Sunday, November 5th (11 am Los Angeles, 2 pm New York, 7 pm London) there will be an overview of volunteering with #MEAction. Community organizer Ben HsuBorger will talk about previous accomplishments and upcoming opportunities to get involved. The majority of the time will be left for Q&A...

@Allele and others, Here's another helpful link when sharing information via email. Unrest will be shown by Independent Lens starting Jan. 8, 2018: http://www.pbs.org/independentlens/films/unrest/ For those who have not heard of it, Independent Lens is a TV show in the USA on public...