• 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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Search results

  1. Christine

    Urgent - we need a name

    Nico, I love your suggestion of MEandYou USA! You're right that this model can be used repeatedly for any country that is researching ME. What do the other leaders of this group think? Is anyone in touch with Maria already that would feel comfortable pitching this idea to get her blessing...
  2. Christine

    Urgent - we need a name

    Hi all. My husband Tom (disabled for 7 years from ME) and I are excited to be part of this campaign. Have we agreed to a name for the campaign? Tom likes the name MillionDollarBugHunt, but my first impression of it was it sounds a little bit like a joke. However, it is unique and catchy...
  3. Christine

    Good news! Norwegian govt funds Rituximab trial - possibly partial, amount not yet announced

    I nominate this news as Front Page article material. It would probably encourage many people here to know the news of an imminent Phase 3 clinical trial (finally, a clinical trial!) along with the encouraging story about how the funding came together in such a broad spectrum of support.
  4. Christine

    Good news! Norwegian govt funds Rituximab trial - possibly partial, amount not yet announced

    Isn't this wonderful news?! A big thank you to Maria for a hugely successful and inspiring campaign! The MEandYou crowdfunding effort has been bold, clever, and effective. This gives the M.E. community reason to hope. Our community is on the verge of a confirmation study that, if...
  5. Christine

    Vote once from anywhere to win $17,000 for MEandYou by Sat 1 June!

    Glad you were awake to see the victory!!! :)
  6. Christine

    Vote once from anywhere to win $17,000 for MEandYou by Sat 1 June!

    :balloons::balloons: YAY!!!!!!:balloons::balloons::balloons: Nice work, everyone!!!! Let's keep this up and get the MEandYou study funded!!!
  7. Christine

    Vote once from anywhere to win $17,000 for MEandYou by Sat 1 June!

    It is on the Stormberg Facebook page. It is the first comment by Stormberg under the picture of his feet with the blisters. Let me know if you still are unable to find it.
  8. Christine

    Vote once from anywhere to win $17,000 for MEandYou by Sat 1 June!

    That is enough, just click the little circle to the left of MEandYou!
  9. Christine

    Vote once from anywhere to win $17,000 for MEandYou by Sat 1 June!

    Sasha, Stormberg wrote it on his Facebook page!!!! Steinar J. Olsen crossed the border to Tvedestrand about 18:30. Expecting to go into the goal just before 23:00 tonight, if my legs hold (!). We are close! Let's pray his legs hold!!!
  10. Christine

    Vote once from anywhere to win $17,000 for MEandYou by Sat 1 June!

    587 votes in the lead! Keep it up everyone!!! :)
  11. Christine

    Vote once from anywhere to win $17,000 for MEandYou by Sat 1 June!

    I will continue to try and rally as much support as I can! I agree...we want first!!!
  12. Christine

    Vote once from anywhere to win $17,000 for MEandYou by Sat 1 June!

    187 votes in the lead!!!
  13. Christine

    Vote once from anywhere to win $17,000 for MEandYou by Sat 1 June!

    How can you sleep at a time like this??!! ;) We have extended our lead to 175 last I checked!!! Let's keep it going! The nice thing about this campaign being global is that someone is always awake to keep the momentum going!!!
  14. Christine

    Vote once from anywhere to win $17,000 for MEandYou by Sat 1 June!

    Do we know when on Saturday? Morning or evening? Or just when he is finished walking?
  15. Christine

    Vote once from anywhere to win $17,000 for MEandYou by Sat 1 June!

    84 vote spread! Every vote counts!!!
  16. Christine

    How does one help fund ME/CFS Orgs when we are many but limited in cognitive or physical ability?

    Here is another contest that you only have to vote one time and win $17,000 for MEandYou! Vote by June 1 at https://www.facebook.com/questions/10151592269384590/. Click the button next to MEandYou. That's it!
  17. Christine

    Vote once from anywhere to win $17,000 for MEandYou by Sat 1 June!

    Thank you, Sasha, once again for posting this and keeping everyone updated on the opportunities to support MEandYou! This is such a great opportunity to win a large amount of money! I voted and shared with all my friends! Let's win this for M.E. patients everywhere and get this study funded...
  18. Christine

    MEandYou: 90 Days to Raise $1.2 Million for Rituximab Trial!

    Maria recently shared an amazing video to remind us all "why" and "what" we are doing in getting behind the MEandYou crowdfunding campaign. I know many saw this video when it first came out in 2011 after the Norwegian study was published, but it is worth watching again. It's a real tear-jerker...
  19. Christine

    MEandYou: 90 Days to Raise $1.2 Million for Rituximab Trial!

    The MEandYou crowdfunding just passed the 1 Million NOK mark! That's over $180,000 and 20 patients funded! :balloons: The bigger news is that their daily average is on it's way up. After averaging about $2,500 per day for the first 45 days, the last 3 days they brought in over $26,000...
  20. Christine

    MEandYou: 90 Days to Raise $1.2 Million for Rituximab Trial!

    Congratulations, Maria! You just got your first public endorsement from a U.S. doctor for the MEandYou campaign. Dr. Andreas Kogelnik from OMI in California on his Foundation's (OMF) Facebook page: https://www.facebook.com/pages/Open-Medicine-Foundation/309364692501292?fref=ts How amazing to...
  21. Christine

    MEandYou: 90 Days to Raise $1.2 Million for Rituximab Trial!

    A friend asked me to post this: My wife and I made a donation to MEandYou in the name of Jesus Christ. Gordon Indiana, USA
  22. Christine

    MEandYou: 90 Days to Raise $1.2 Million for Rituximab Trial!

    Maria, we are so grateful for your bold, brave and selfless leadership and determination in starting the MEandYou Campaign! To the M.E. community: My husband and I donated because Jesus Christ cares about M.E. and you. Using the above comment as a mission statement, we just launched a...
  23. Christine

    What I've learned watching my husband suffer with ME/CFS...

    Thank you for your words of encouragement and warning (Brenda and bleusky). I agree that the topics of suffering, healing and God are ones that have been used for encouragement as well as used to heap guilt on the sufferer. Someone who is already suffering enough physically does not need this...
  24. Christine

    What I've learned watching my husband suffer with ME/CFS...

    I completely understand your skeptisim, ukxmrv, and I appreciate you voicing it because that means many others were probably thinking it, too. But it is true that my husband and I are together on this. Did you have a chance to look at our Caringbridge site, or listen to the talk? You can...
  25. Christine

    What I've learned watching my husband suffer with ME/CFS...

    My husband has carried the burden of ME/CFS for five years now. My heart aches for his suffering and for all of you who experience this same suffering. This illness has challenged everything I believe about God. Does He love us? Does He care that we are hurting? Why does He allow this...