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Be careful... or I might start sending you a bunch of kitty photos via private message. :whistle::angel: More seriously, I'm looking forward to watching the videos but need to plan it for when I have some brainpower and won't be interrupted.

Thank you, @MErmaid :) Since I have an account at Washington Post (subscribe to them in addition to my local paper) I decided to write a comment.

Yes, I usually click New Posts to start with. But often I will go to individual forums that are less interesting to me and click "Mark Forums Read" for just that forum. It makes the list of new posts shorter and easier to skim. I'm not very consistent in how I read the forums, though:)

I often skip over this "other health" forum [limited energy] so I would have missed this thread if not for a mention of it in another forum. I have not watched the videos yet but thanks @Andy for posting them. I'll come back and read the comments after I've had a chance to watch them (which may...

I agree with part of this. If these words are used simply as an accusation, a way to feel better than someone else who may be ignorant about something, then it's not helpful. What's the point of making other people angry? But I think there are ways to talk about privilege in a way that teaches...

This video by Dysautonomia International gives a basic overview of POTS (Postural Orthostatic Tachycardia Syndrome). The video is on Facebook but you don't have to have an account to view it. Patients with POTS or other types of Orthostatic Intolerance may not find much useful information here...

So, does anyone on this forum live near Atlanta? :) Just curious. My father lives in the Atlanta area but I know he wouldn't want to go to this. I do hope he will watch Unrest when it comes on PBS (Independent Lens) in January but even that's not a sure thing.

Nope, I'm just a patient, no official ties to any organization. :) I just think ME Action is a good source of information (at least for US patients). I follow them on twitter and get their emails (signed up for their list a while ago). And although I also don't generally do well with online...

Unrest film is collaborating with the CDC to offer a free showing of the film in Atlanta, Georgia. And this will count as continuing education for medical professionals. This seems like a big deal, I think?:) Tweet from @unrestfilm: https://twitter.com/unrestfilm/status/930197780269645824 Link...

Hmm, amazon links work for me whether from the USA or UK site. I did a search on the terms you listed and I've included the amazon.co.uk link below: Is it possible that you have some plug-in (an ad blocker, or privacy badger) that is getting in the way? Or maybe some other browser setting...

I just saw this from ME Action on twitter (@MEActNet): https://twitter.com/MEActNet/status/930222000966176768 The statement is in an image attached to the tweet so it may be hard to read by some. Here's the text from the image: "Without meaningful and immediate investments in biomedical...

Thank you! That's why I posted, so others would be encouraged to give it a try. Before talking with the folks who do this kind of political organizing I really didn't realize that just telling my story one-on-one would be so helpful. But I guess it forges a connection and puts a "face" on the...

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...