• 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.

    To become a member, simply click the Register button at the top right.

Search results

  1. O

    NPR Boston affiliate: "Often Bedridden For 25 Years, Advocate Welcomes NIH Move"

    That Boston NPR piece was great! I think people in our media (and general public in some cases) are finally starting to "get it"!
  2. O

    NPR Boston affiliate: "Often Bedridden For 25 Years, Advocate Welcomes NIH Move"

    @RivkaRivka I'm listening now! It was easy to find all this at WBUR.org
  3. O

    NPR Boston affiliate: "Often Bedridden For 25 Years, Advocate Welcomes NIH Move"

    Yes, Rivka. I know how much this costs you. Thank you so much for your excellent advocacy here! (which builds on past efforts like your solo demonstration a few years ago) You have inspired many, including me, that we can all make a difference - even in solo - but smart advocacy. Even more so...
  4. O

    MEAdvocacy.org Update and a Call for Continued Support

    Question for those who felt betrayed, misled or unhappy with either MEAd or the stance it took in the WP article: Would it change how you feel about it if: 1) A careful polling of donors/members/broader community about potential responses to the IOM report, rather than informal communications...
  5. O

    MEAdvocacy.org Update and a Call for Continued Support

    Sorry @RustyJ , I'm not a politician and I don't pretend to be. I'm a patient. One who should be back in Finances but is currently disabled and in physical misery. As part of the MEadvocacy.org Working Group, I will keep listening to other patients and make suggestions that I think will help...
  6. O

    MEAdvocacy.org Update and a Call for Continued Support

    It was good to hear more about how you felt misled by MEadvocacy.org, @snowathlete and where you feel friction is developing with the advocacy group and patients it hopes to represent. I will take your points back to the Working Group because I agree we need to be very clear and qualify...
  7. O

    MEAdvocacy.org Update and a Call for Continued Support

    I am heartbroken that division is happening among friends and fellow sufferers. @Kati , I don't mean to pick on your post, I could have picked from several posts on this thread to show the fracturing that is occurring among us. You make several good points and your thoughts on the best way...
  8. O

    Which version of Ramsay's Disease is better?

    Thank you @charles shepherd for the resources and the background you provided on Dr. Melvin Ramsay. He sounds like a truly remarkable man. When I cast my vote for my condition to be known as Ramsay's Disease, I mean it as a tribute and honor to a man who faithfully and honorably stood up for...
  9. O

    Which version of Ramsay's Disease is better?

    That is good to hear that Ramsay's Disease may not conflict with Ramsay's Hunt Syndrome after all, Dr. @Jonathan Edwards . I am glad to have a "2nd opinion" from another doctor such as yourself as to whether this is a deal-breaker or not. I feel it is good to get these things out in the open...
  10. O

    Which version of Ramsay's Disease is better?

    Although medicine is trending away from Eponyms (diseases named after people), there are certain situations where they are still appropriate, all of which may apply to the ME/CFS/SEID debate. The name may be shorter and more memorable than the medical one Sometimes the medical name proves to be...
  11. O

    What do you think of the IOM's new name for ME/CFS? VOTE!

    I agree it is good to be prepared with succinct answers. For their benefit and ours. Long conversations wipe us out and cause PEM. I usually describe my condition as a neuroimmune disease that causes central pain and weakness 24/7, which is made much worse by sitting, standing, bright lights...
  12. O

    The KnoW M.E. Challenge

    @Gingergrrl Oops, I should have just called it the IOM report! But literally, on page 245, it mentions a strategy of appointing a "SEID Czar" to ensure their message gets out to the masses. I thought maybe he/she would call me and ask me to change our challenge to the KnoW SEID Challenge...
  13. O

    What do you think of the IOM's new name for ME/CFS? VOTE!

    I think @beaker 's idea has merit. Why not have our own chosen casual name of Ramsay's Disease? The medical community can debate over ME/SEID/CFS and possibly adopt SEID into their textbooks, etc. giving us all the official disease-recognition benefits that might entail, but I see no reason...
  14. O

    The KnoW M.E. Challenge

    For now, not at all. Maybe a footnote? I am going to need a lot more convincing. Maybe a phone call from the SEID Czar? (see p245 of Beyond ME/CFS) This is just unreal.
  15. O

    Release of the IOM report - live webcast-2/10/2015

    Anyone want to volunteer to be the "SEID Czar"? (see p245) This can't be happening.
  16. O

    Release of the IOM report - live webcast-2/10/2015

    Is the following statement true? All patients that fit the CCC definition of M.E. also have the newly proposed SEID, but not all of the SEID patients have CCC M.E. (this would translate to there being more people with SEID than M.E.) Then, I would be curious to test the same statement as...
  17. O

    The KnoW M.E. Challenge

    @Gingergrrl I agree this challenge will really take off once we get a celebrity or two to take the challenge and post their videos. There is a real possibility that somebody famous will be taking the KnoW M.E. challenge soon (in the next couple weeks I hope), but I don't want to say who until...
  18. O

    The KnoW M.E. Challenge

    Hi @Aerose91 . I must say it made me sad to read your posts and to consider that the current state of public opinion/perception/policy regarding our disease could be so blatantly warped to actually cause pwME's to be embarrassed about their own disease. I don't fault you for thinking this way...
  19. O

    The KnoW M.E. Challenge

    Thanks for posting about the KnoW M.E. Challenge, @Gingergrrl You are correct that we want it to be shared far and wide to start getting the public acquainted with the severe disease M.E. It starts with even being able to pronounce the name Myalgic Encephalomyelitis, which even my 3 yr old...
  20. O

    The P2P Draft report is out

    @jimells Congratulations on a superbly written, concise letter. I am sending this out to family and friends because it takes a very complicated issue and boils it down to such a clear idea of the problem with P2P and what is at stake for us. I compiled and sent a more detailed letter to HHS...
  21. O

    The Call for Opposition: Challenging the P2P and IOM Processes

    SAMPLE P2P Opposition RESPONSE: Feel free to copy/paste or modify, and re-send to the govt. email addresses listed at the bottom of my letter. My response is a compilation/blend of several advocates who have written amazing responses already…Gabby Klein, Jeannette Burmeister, Eileen Holderman...
  22. O

    The P2P Draft report is out

    I second that! The NIH is forcing a process on us that is more costly, more draining on patients (how many times are they going to ask us to publicly comment to painfully educate and re-educate panel members with no ME experience? And why is that our job anyway?), and with a much longer wait...
  23. O

    P2P Workshop for ME/CFS Stand-In Lay-Down Protest Dec 10, 2014

    @Christine and I wrote a detailed account of the protest on my Caringbridge site. It is the Dec.12, 2014 entry. http://www.caringbridge.org/visit/tomjarrett I hope it encourages all patients/advocates with M.E. to know there is a rapidly growing number of healthy people (most from our church...
  24. O

    P2P Workshop for ME/CFS Stand-In Lay-Down Protest Dec 10, 2014

    Just to clarify, Jen's crew came and Ryan's did not. Canary's film crew came the morning of the P2P Protest and got some nice shots right after we setup and things were bustling with lots of foot traffic from the metro. They did some interviews, but the conditions were windy, and the audio may...
  25. O

    P2P Workshop for ME/CFS Stand-In Lay-Down Protest Dec 10, 2014

    Hi all, we are back home safe. I am so glad this all came together so we could show the NIH/HHS just a glimpse of who we are and why we are angry about being ignored and mistreated, and why we are opposed to the P2P/IOM fiasco. I wish we could have had more time to build more posters so...
  26. O

    Let's Organize a Protest for the Dec. 9 & 10 P2P in Bethesda, Maryland

    Thank you for all the pictures! We have all that we need now and the posters are printed!
  27. O

    Let's Organize a Protest for the Dec. 9 & 10 P2P in Bethesda, Maryland

    How Can We Help M.E. Patients Overcome the Obstacles to Protest? Answer: Recruit healthy and strong reinforcements to help them! We are calling on a group of healthy volunteers to “Stand-in and Lay Down” in the place of M.E. patients who are too sick to protest for themselves, as well as any...
  28. O

    Let's Organize a Protest for the Dec. 9 & 10 P2P in Bethesda, Maryland

    We are still looking for 12 pwMEs who can give us a close-up picture (or a picture of you at your sickest--in bed--or in the hospital, etc.) and a first name that we can use on our 12 posters at the P2P Protest this week. Please PM me so I can arrange to get a jpeg image from you. I think it...
  29. O

    Let's Organize a Protest for the Dec. 9 & 10 P2P in Bethesda, Maryland

    @catly Good thought. I think registration is still open for those Patient/Advocates who want and are able to attend the conference in person and/or submit their public comments. But for our Protest group, by way of principle, we will refuse to participate in the sham IOM/P2P process, and will...
  30. O

    Let's Organize a Protest for the Dec. 9 & 10 P2P in Bethesda, Maryland

    Here is the outline for the Dec. 10th P2P workshop "stand-in, lay down" protest: A group of volunteers and pwME's will gather in D.C. on the night of Tues. the 9th at a location TBD (conference room or church or living room of a friend, depending on group size). Here I will show a film or some...