• 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. K

    Does anyone know of any cases in the US where Rituximab has led to remission of CFS/ME?

    Check out this video. The last segment is about a lady who is doing much better about being treated with rituximab at the OMI in Silicon Valley.
  2. K

    Phase III trial of Rituximab may not be required in Australia for listing

    That's positive. Wonder if it will be similar in NZ since we are a small country here too.
  3. K

    Ron Davis, Ashley Haugen, Linda Tannenbaum and Raeka Aiyar at IiME #OMF

    Never thought I would get so excited and for it to bring a massive smile on my face seeing Researchers in different countries having dinner together!! This is so nice to see!
  4. K

    HANSON, FLUGE AND MELLA JOIN OMF SAB!!!

    Oh my oh my this is so exciting and gives hope.
  5. K

    Never get colds or flus anymore? Here's one theory as to why....

    I used to catch everything under the sun! People used to think I was exaggerating and so I kept pushing through, working despite having bad colds/flus and then my ME began and I haven't had a cold/flu for a year and a half. I have gone out a bit and been around people who are sick (my hubby had...
  6. K

    Norwegian Cyclophosphamide 40 person Open Label Study

    Thank you :-)
  7. K

    Norwegian Cyclophosphamide 40 person Open Label Study

    Hi guys I hope you don't mind me posting in this section, I searched for this study but couldn't find anything? Does anybody know when the results of the Haukeland Cyclophosphamide 40 person study will be published? I know it was due early 2017? :-)
  8. K

    Lightening process

    I did the Lightning process late last year, as had heard of people I knew (not personally but through friends) who recovered. I was desperate, hopeful and did do some research. Obviously not enough, as I went ahead with it and it was terrible. Gave it a months go after the course ( putting the...
  9. K

    Update on Ampligen Availability in the US

    I just came across this link while googling Ampligen, quite unwell today so unsure if it will be helpful-only skim read it, but thought it may be useful...
  10. K

    Griffith University is looking for healthy controls

    Thank you Kati :)
  11. K

    Griffith University is looking for healthy controls

    I found their facebook page but unfortunately can't find this post for some reason? When was it posted?
  12. K

    Griffith University is looking for healthy controls

    Could someone post the link to this facebook post? I can't find it and keen to share it with a friend who lives in Queensland :-)
  13. K

    OMF's End ME/CFS Worldwide Tour

    So awesome!! Go OMF!
  14. K

    Do you find restaurants exhausting?

    Yes, especially if I am inside and it is busy! There is a nice rural cafe, near where i live, with a big outdoor dining area on a grass field, I find that a lot better than a busy cafe/restaurant.
  15. K

    Constant Brain fog/disconnected feeling

    Yes, I think the kind of thing you are describing is what I have has consistently since the symptoms of my CFS began about a year and a half ago. I have described it as feeling spaced out all the time, just not really there and feel i am almost in a movie sometimes. It is no fun. Is it part of...
  16. K

    Who is more likely to gain improvements/remission from Rituximab?

    Found that information in the "Purpose" section of this current Rituximab trial study record detail: https://clinicaltrials.gov/ct2/show/NCT02229942
  17. K

    Who is more likely to gain improvements/remission from Rituximab?

    My info is an observation :)
  18. K

    Who is more likely to gain improvements/remission from Rituximab?

    I find it so interesting this is the case!! I know for a fact I used to catch everything under the sun, and now I haven't had a proper cold or flu for over a year!! Would love to know the reasons or theories behind this occurrence!
  19. K

    Who is more likely to gain improvements/remission from Rituximab?

    I used to catch everything. My husband has been sick with colds and flus and I have caught nothing this past year. I have been sick for a year and two months.
  20. K

    Who is more likely to gain improvements/remission from Rituximab?

    Hi guys, I have been reading up online about the Rituximab trials and came across information where it says that Rituximab might be helpful in treating a subset of CFS patients who have a chronically activated immune system. Was wondering if anyone knew what kind of CFS is more likely to be...
  21. K

    Products that make your life easier?

    Foam earplugs - makes sure I won't be woken and can have a full nights sleep :) Dry shampoo- for days when I am unable to shower Radio by my bed - to flick on when I am resting in bed and up to listening to something
  22. K

    Feeling spaced out/visual floaters

    Hi guys, I have felt constantly spaced out/ out of focus and constantly had slightly blurry vision/visual floaters since my CFS began (just over a year ago now). i know there is another thread about feeling spaced out but interested in more if others take anything for this? Had anybody had...
  23. K

    Are you able to drive?

    I can drive but no point really as driving somewhere (even 5 mins) would use my energy for the day.