• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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    The ePatient Revolution

    RyanPrior submitted a new blog post: The ePatient Revolution Ryan Prior shares his experience and his thoughts from attending the Stanford Medicine X Conference as he contemplates the rising of the ePatient Revolution ... We need more and more ME/CFS patients to integrate into the ePatient...
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    ME/CFS at the National Press Club in Washington, D.C.

    @Roy S @Ruthie24 The last order of the day tomorrow is to call C-SPAN, as seems to be the procedure with these things. Llewellyn King has been doing this for decades and really seems to know how to time everything for maximal effect. We'll hope C-SPAN comes! Llewellyn, his wife Linda, and his...
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    ME/CFS at the National Press Club in Washington, D.C.

    Thank you everyone for helping with this!! As @Wally mentioned, we are hard at work making arrangements for the 2-day Washington, D.C. press push. Everything is still being figured out. Once we have everything nailed down, we'll let people know how to watch the video of the event or how to...
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    ME/CFS at the National Press Club in Washington, D.C.

    Hi everyone, I will be on a panel with Dr. Andy Kogelnik and journalist Llewellyn King at the National Press Club in Washington, D.C. on Friday, January 24th at 9am. The event will last approximately an hour. It will have a brief introduction by Llewellyn King followed by a brief 5-minute talk...
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    Introducing the Blue Ribbon Foundation

    Thanks Susan, I've really enjoyed getting to meet you too. And hopefully we can meet soon! I sent a little message on the forums on my thoughts on how to raise money well for big research projects. All best, Ryan
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    Help with raising funds for Prof. Lipkin's study

    @Wally When fundraising for our documentary or for our non-profit, I think we get a slightly different set of questions. But overall, when fundraising for movies, research, or building houses the main thing to keep an eye on is organizational overhead. My dad is also in the non-profit sector so...
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    Introducing the Blue Ribbon Foundation

    @Sushi We're still liaising with the (U.S.) sites to figure out how to best design a program that would enable the interns to make a difference at each site. The 8-week summer plan is pretty good (and can be found at cancer institutes), but there are also other formats that could work, such as...
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    Come Discuss The Blue Ribbon film (with Ryan Prior)

    Mark, love the thought on lighting a candle rather than cursing the darkness. When working on this project, I keep thinking back to one of my favorite poems by Charles Bukowski, "The Laughing Heart." your life is your life don’t let it be clubbed into dank submission. be on the watch. there are...
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    Come Discuss The Blue Ribbon film (with Ryan Prior)

    I did talk with Rivka about possibly staging a protest for the film, but yes, it's hard to see what we could get out of it. Michael Moore does use that kind of small protest on the street approach in his films with the express purpose being to make people in power look foolish. But I'm not...
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    Come Discuss The Blue Ribbon film (with Ryan Prior)

    I'm trying to keep my comments short, but one other difference from Voices From the Shadows is that we have an opportunity to be more upbeat. We've got a lot to be proud of: everything Bob and Courtney Miller have done is brilliant cinema: talking to the president, slamming money on the table...
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    Come Discuss The Blue Ribbon film (with Ryan Prior)

    Also, I haven't seen Voices from the Shadows except for the trailer and the 4-minute introduction. I'm ordering a copy today. I'm surprised people haven't talked more about I Remember Me; that was a very meaningful movie for me when I first got sick. It was great for explaining this illness to...
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    Come Discuss The Blue Ribbon film (with Ryan Prior)

    I think my response to Koivy was a little too strong and have been thinking about this a lot. Getting the wording right on simply talking the name is going to be really tough. I'm thankful for all the interesting discussion. Avoiding "chronic fatigue" is going to extremely important and yes, we...
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    Come Discuss The Blue Ribbon film (with Ryan Prior)

    Regarding the "looking" good, we've talked about interviewing people laying down or with wheelchairs or walkers next to them (or sitting in wheelchairs). If patients require feeding tubes or oxygen tanks, we can show that. If they are planning an outing or are simply at home, we can follow them...
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    Come Discuss The Blue Ribbon film (with Ryan Prior)

    For Koivy's question: New to the system, still trying to work things out. Hopefully responding this way works as planned (and the Reddit AMA really destroyed me too!): 1. There are important differences between ME and CFS, but I'm not convinced this is the time to dwell on them. I hope the...
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    Come Discuss The Blue Ribbon film (with Ryan Prior)

    This looks excellent. Very exciting.
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    Come Discuss The Blue Ribbon film (with Ryan Prior)

    I want to thank everyone who has given us such a positive response about the Blue Ribbon film so far. The fundraising had a strong week. We're very excited about the number of people who have reached out to us and helped get the word out. We're getting a lot of interest all over the world, from...