• 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.

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

Search results

  1. L

    Rivka Solomon speaks on NPR Newshour tonight (4/22/21): ME/CFS and Long COVID

    Outstanding! Thank you, @RivkaRivka.
  2. L

    Big opportunity to raise funds for OMF (all it takes is a vote click).

    I was just able to vote a third time!
  3. L

    Submit a question for the December debate stage by Dec 13

    I answered both questions. 1. What question(s) should we ask on the debate stage? I suffer from a disease the CDC calls a “Public Health Crisis”. I have been sick since 1983! I am bedridden, severely ill and I lack medical care. I lack medical care not because I don’t have insurance but...
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    Submit a question for the December debate stage by Dec 13

    There are two questions. 1. What question(s) should we ask on the debate stage? 2. Why do you want the candidates to answer this question? (You are not required to answer this question.) You can answer each question with up to 250 words and the form counts your words for you...
  5. L

    Big opportunity to raise funds for OMF (all it takes is a vote click).

    I was able to vote on Dec. 7th and again on Dec. 8th. If you already voted once, please go back and see if you can vote again! http://www.projectforawesome.com/watch?v=YrbTKd3C41I Thank you, @Ben H, for making this video.
  6. L

    Panel and Q&A after Unrest at Hampshire College, Feb, 2019

    @debored13, I’m glad you’re getting your needs met. I saw your pass was because of mold. You’re telling me not to blame doctors. You’re being helped. But I do blame them. I’m not being helped. I appreciate the outreach they are doing but the hypocrisy also infuriates me and I’m dying...
  7. L

    Panel and Q&A after Unrest at Hampshire College, Feb, 2019

    I am severely ill and bedridden. The only time I have left my home in over a decade has been by ambulance to go to the ER and you’re talking to me about National Park passes! I don’t know how much longer I can go on like this or what will happen to me when one of my sick and disabled elderly...
  8. L

    Panel and Q&A after Unrest at Hampshire College, Feb, 2019

    I shouldn’t be straining to write but I need to vent! At 31.33 minutes, Dr. Lynch starts talking about his slide “Basic Clinical Management”. 1. Validate the patient’s experience and educate about the disease. Dr. Lynch says, “They don’t have to feel like they have to fight for the existence...
  9. L

    My ME is in remission

    Fabulous news! I’m so glad this worked for you. Wishing you continued healing and wishing all the best to you and Omar. :heart:
  10. L

    Advocacy Action Alert: Congressional Letter to HHS

    My personal comments added to the joint effort Massachusetts ME/CFS & FM Association, Solve ME/CFS Initiative and #MEAction form letter: Thank you, Senator Markey, Representative McGovern and Senator Warren for your help. Language and writing are very difficult for me now as I am very...
  11. L

    Michael Sharpe on Twitter

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    Michael Sharpe on Twitter

  13. L

    #MEAction protests Per Fink in NYC today

    I’m so grateful for the amazing advocacy work of Terri Wilder. Thank you, Terri! :star: I hope her crash isn’t too bad. :heart:
  14. L

    #MEAction protests Per Fink in NYC today

    It's great to have Senator Hoylman speaking out for us!
  15. L

    #MEAction protests Per Fink in NYC today

    Thank you, @Janet Dafoe (Rose49), Ron and Ami Mac, MD! I hope we get to hear more about this.
  16. L

    #MEAction protests Per Fink in NYC today

    His name is Donny Moss. Thank you, Donny Moss, and everyone who fought back against Fink! Here is the video. https://www.facebook.com/hashtag/meactionny?source=feed_text&__tn__=*NK-R
  17. L

    Community symposium on molecular basis of ME/CFS at Stanford Discussion Thread

    3:35 p.m. Robert Phair, PhD, Integrative Bioinformatics Inc. Metabolic Traps: A new way to think about ME/CFS (including the first experimental results) 4:00 p.m. Ronald W. Davis, PhD, Stanford University What’s Next? 4:20 p.m. Panel Discussion: Afternoon Speakers Closing Remarks: 4:55...
  18. L

    Community symposium on molecular basis of ME/CFS at Stanford Discussion Thread

    Thank you, Janet. It's so great to see all the tweets and pictures. I hope Whitney is doing better today and that you were able to get enough rest last night. Here is another wonderful speaker :thumbsup:
  19. L

    OMF-why I advocate for them.

    Thank you, @Ben H, for using your time and energy to make this video to share with us. I greatly appreciate it and all that you do for us. You do an AWESOME job! :thumbsup: :star:
  20. L

    Whitney's Plea. Action for May 12

    Wow, great job everyone who made this happen. Very powerful video!
  21. L

    Janet Dafoe in hospital

    Glad to know it went well :thumbsup:. Sending love :heart: :heart: :heart: and best wishes :hug: :tulip: :bouquet:.
  22. L

    New $1 million donation for OMF's ME/CFS research!

    Yay! I am so happy to hear this excellent news. We certainly need it. Thank you so much to the very generous donor for funding this important research! I am extremely grateful and look forward to the findings.
  23. L

    A Song for ME: Blowin' in the Wind

    Wow! Beautifully done. I especially like the question that you ask and the use of the word fraud: "And how many flaws can a trial embrace Before it is seen as a fraud?"
  24. L

    Mono Virus Discovery - Implications for ME/CFS?

    From Science Daily https://www.sciencedaily.com/releases/2018/04/180416121606.htm Software behind discoveries to be made public Detecting and tracking the activities of these transcription factors took years of work involving dozens of laboratory and computational experts. The project...
  25. L

    Mono Virus Discovery - Implications for ME/CFS?

    Epstein-Barr virus protein can “switch on” risk genes for autoimmune diseases EBV may trigger some cases of lupus, say NIH-supported researchers. https://www.nih.gov/news-events/news-releases/epstein-barr-virus-protein-can-switch-risk-genes-autoimmune-diseases Transcription factors operate...
  26. L

    OMFScienceWednesdays-RBC shape, RBC deformability

    @Ben H, @JaimeS, there is no link at the "Click here". Thank you for the information on RBCs and the research that is happening.
  27. L

    OMF Newsletter March 2018

    I completely agree!
  28. L

    SMCI Monthly Update Thread - March 2018

    Thank you for getting this letter written! I hope we can get a lot of signatures and that it has some impact. I just want to add a little information in case it helps other people. The deadline for your representative to sign the letter is Wednesday, March 14. The #MEAction page is more...
  29. L

    Pineapple fund--donation to OMF increased to $5 million!

    Thank you, Pineapple Fund! I’m bedridden and have been sick with this horrible disease since 1983. My caregivers are elderly and I’m very frightened about my future. Your generosity is bringing us so much hope. I’m confident that the Open Medicine Foundation will put this money to the best...
  30. L

    Farewell – A Last Post from Anne Örtegren who has just lost her struggle with ME

    I hear you too, Anne. I’m so sorry that you suffered so much and that you couldn’t stay any longer. I understand. To her loved ones, I send my heartfelt sympathy and deepest compassion.