• 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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. adin

    Berberine helped me

    I pulsed high dosage vitamin D for a couple weeks, and ended up with a kidney stone, so definitely be careful! Has anyone tried the berberine metabolite dihydroberberine? It’s supposed to have fewer GI side effects and needs a lower dosage. Additionally, does dihydroberberine still need...
  2. adin

    Phoenix Rising 2013 Annual Report

    My own personal thanks to Mark, Will, Kina and all the rest of the volunteers. 2013 started out kind of scary and ended on a great note. Here's to a great 2014!
  3. adin

    What Should Phoenix Rising Tell the IOM Committee?

    Since there's been some good feedback here, is there anyone who's up to working on putting this presentation together with me? And I hear most would like a more technical presentation along with stating our objection to the contracting methodology and the composition of the panel. (Please don't...
  4. adin

    What Should Phoenix Rising Tell the IOM Committee?

    I can help put things together but I *definitely* need help from others to brainstorm & get together source material. I really want as much of what we (I?) present to be from the members as possible. I apologize as I'm pretty brain dead due to our newborn (3 wks old today!) since my wife and...
  5. adin

    What Should Phoenix Rising Tell the IOM Committee?

    We'll be presenting remotely via videoconference. I assume we'll be able to screenshare or will be able to give the committee written notes.
  6. adin

    What Should Phoenix Rising Tell the IOM Committee?

    Just thinking out loud, but do we want to do something unique vs the usual PowerPoint presentation? Since we are such a unique organization, maybe we should try something a little different? My first thought was a collage or a montage of patients and a single sentence from each? (Like 10...
  7. adin

    What Should Phoenix Rising Tell the IOM Committee?

    I agree — while we can mention our displeasure with the contracting process in the slides we give the members of the committee, I don't think we need to spend any speaking time on issues that are outside the scope of this committee. We need to focus on telling them what we want them to know...
  8. adin

    Cross Country Trip to meet other Phoenix Rising community members!!

    Tammy we used to live in Albuquerque and are currently attempting to move back—there are several ME/CFS'ers currently in Albuquerque that talk & meet every now and again. You probably want to PM Sushi for more info on everyone in ABQ. Fingers crossed that we'll be there soon. (hopefully we can...
  9. adin

    Cross Country Trip to meet other Phoenix Rising community members!!

    Still lots more to see around there that can be done in bite size increments! from fossil hunting by Socorro & touring the VLA to hanging out in Madrid, the Caldera national preserve, ten thousand waves, pagosa hot springs, etc... ! oh, btw, Jen is Devi75
  10. adin

    Cross Country Trip to meet other Phoenix Rising community members!!

    Karen — thanks for the incredible writeup! It was beyond awesome to finally meet so many other ME/CFS'ers. Truly friends for life! Now we just need to get everyone else to start their own "regional" meetups! Tammy — how long have you been in ABQ? I've been really shocked at how many other...
  11. adin

    VOTES: Helping other groups that may help us

    voted. I'd recommend trying to partner with a no-kill shelter in the Miami, FL area...I've heard that it has one of the top 5 kill rates in the entire US.
  12. adin

    Phoenix Rising and Me

    We haven't gotten to formally meet yet, but I'm glad you're here! Great story!
  13. adin

    In Memory of Rich Van Konynenburg.

    wow. Diana, I'm sorry for your loss....Rich was a great guy.
  14. adin

    DSM-5 proposals for Somatoform Disorders revised on April 27

    Phoenix Rising's official comment (I'm still foggy, so please pardon the grammar):
  15. adin

    Article: Dr. Nancy Klimas Forms Neuro-Immune Institute on ME/CFS at Nova Southeastern University

    This is *outstanding* news. I can't wait to see everything that she has in store in the days ahead. Any words on Dr. Klimas' VA and private clinics? Will personnel from the old clinic be following her to the new clinic?
  16. adin

    Article: CFS Hits Big Time "War on Mystery Disease" on Front Page Wall Street Journal

    Too bad ADM didn't mention the previous findings of misuse of funds allocated to CFS research. *That* would certainly open some eyes in the public & show a continued history of abuse by the CDC...
  17. adin

    Article: CFIDS Association Of America Interview with Jennifer Spotila

    I agree that at this point the CAA needs to take some radical steps. Like someone earlier in the thread said, they need to be MAKING the news, not reading it. It sounds like they need to give up on pure research at the moment and get in the game of becoming the ALF of the ME/CFS world. It'll...
  18. adin

    Article: CFIDS Association Of America Interview with Jennifer Spotila

    Just a small correction, Phoenix Rising is a *Not* For Profit Organization and can very much use your donations and help.