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    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. Tia

    KLS -Or sleeping Beauty disease

    http://pittsburgh.cbslocal.com/2012/11/15/local-teenager-suffering-from-sleeping-beauty-syndrome/ http://en.wikipedia.org/wiki/Kleine-Levin_syndrome Kleine–Levin syndrome, KLS, or Sleeping Beauty syndrome is a neurological disorder characterized by recurring periods of excessive amounts of...
  2. Tia

    Interesting blog post regarding Norwegian ME/CFS developments. (Mella&Fluge research)

    When I hear immune modulation, I think of Judy Mikovitz. Didn't she say the virus XMRV caused immune modulation that led to the fatigue? In that case, se was right!
  3. Tia

    Would you take Rituximab

    Nope! Not on nothing exept antdepressants. Interesting that you say that I must have a strong spirit because everyone keeps telling me that but I don't really get what they mean. It's basic survival instinct. Plus I havent really known I've been sick until recent years when I found out not...
  4. Tia

    GOOD things happening!! Am I a responder???

    Told you guys about the Rituximab! It's good stuff!
  5. Tia

    Rituximab Discussion

    Hell YEAH!
  6. Tia

    Rituximab Discussion

    You're shittin' me?? I have that!
  7. Tia

    Natural Alternatives to Rituximab?

    I've heard theres a thing called "Devils claw" that is some kind of plant from the deep djungle that's supposed to allieve inflammatory diseases and so should work for me, but the trick is to be VERY careful with it since if you use too many drops, it sets the nervous system going which gives...
  8. Tia

    Mella & Fluge will launch major national ME study (update)

    I read that on the first of June, Mella and Fluge were done with their test-science...thing and that it was successfull: http://me-foreningen.se/dok/120507-rituximab-botemedel-pa-vag.htm "The data that has leaked, shows that 2/3 of the patients has significantly improved, which has to be seen...
  9. Tia

    Would you take Rituximab

    Duh! In a heartbeat! I really believe in this treatment and since you're in the hospital during surveillance over night, I'd feel safe and would go through with it. Noone can live like this and 35 years is more than neough so I'm willing to try ANYTHING (almost) to get rid of it. It's like...
  10. Tia

    News Flash: All criminal charges against Mikovits have been dismissed

    Thank GOD! May she continue her research as someone said: uninterrupted. She's done more for us than any other researcher, imo. And we have her to thank for alot.
  11. Tia

    Interesting blog post regarding Norwegian ME/CFS developments. (Mella&Fluge research)

    This sounds waaaay better than theother one since this ends in 2014. One year closer to target, muahahaa!
  12. Tia

    2012 International Congress on Autoimmunity, in Granada, Spain

    Interesting cause I was diagnosed with an autoimmune disease just last spring. (Graves.) Now I've gotten treatment for it since february and lately I've been doing MUCH better! I'm so damn active that I've never been this healthy before! :o :thumbsup:
  13. Tia

    Article: ME drove my daughter to suicide

    I recognize it so much! I've tried to commit suicide several times myself but didn't have the guts to pull through.. It's worse than death to be left laying in your own agony for years and years like this. Death is preferrable. So I really do understand her..just wish I had the guts.
  14. Tia

    Status of Rituximab-ME/CFS Studies

    Just wanted to say thank you to Tom and Wally for their explanations and reviews on Dr. Kogelniks work, very interesting read. :Sign Thanks: Firestormm: I'd be surprised if they weren't granted more funds for ther studies since it's Norway. That country is rich due to their oil and it usually...
  15. Tia

    Status of Rituximab-ME/CFS Studies

    Wow, I didn't know they'd been at it for that many years, but 4 years..wow, I can't wait that long.
  16. Tia

    Status of Rituximab-ME/CFS Studies

    2014..*sniffles* Wow..
  17. Tia

    If CFS is an autoimmune disease, could boosting the immune system be harmful?

    Yes. I've thought about this to, that boosting the immunesystem even more than it already is..that can't be good. We should try to supress it alittle bit instead. Weirdest thing happened to me after I'd been sick in two flues last fall, after Id been in bed for 2 months, I sudenly found myself...
  18. Tia

    Status of Rituximab-ME/CFS Studies

    "- Publication is probably 3 years away." Excuse me?!??! They said if the next trial went well, Rituximab would be out a year later, now its sudenly THREE??? They better not mess with me like this, I've taken a year in consideration now. :Retro mad:
  19. Tia

    Would you take Rituximab

    -YES! Bring it!
  20. Tia

    Mella & Fluge will launch major national ME study (update)

    Old news, they are starting a trial this spring and they got it funded by the state aswell: http://www.tv2.no/nyheter/innenriks/helse/fakta-om-mestudien-som-gir-haap-til-millioner-av-mennesker-3519496.html http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0026358 The...
  21. Tia

    What department and what doctor we will go to when/if treatment comes out

    I was just on the phone with swedish onkologist Ola Lindns colleague and talked about Rituximab (Mabthera) and the effects the norweigans have had and they found the whole thing VERY interesting. When I asked what department in the hospitals that will treat us if Rituximab turns out to really be...
  22. Tia

    Astounding Norwegian research breakthrough with Rituximab can solve CFS mystery!!!

    Yeah, she's hypo, I'm the opposite: hyper. But my doctor told me that hypo can be lifethreatening because the heart can beat so slow that it eventually stops..something like that, if left untreated.
  23. Tia

    Therapy, Living with CFS and Anger

    I feel EXACTLY the way you do! I never talk about cfs, since I'm born with it I just sleep when my body needs to sleep and if I have more energy I go to the gym and live normally, besides the work part. I live in hope with this new norweigan thing because noone can live their whole friggin...
  24. Tia

    Life as a Student with ME/CFS

    I tried studying for 6 years. Failed, had to start over 6 times during those 6 years because I was at home sick so much that I'd been kicked out time after time. I now have a huge student loan and no education, too sick to work..dunno what the hell to do, can't pay my loan on th e disability I...
  25. Tia

    Astounding Norwegian research breakthrough with Rituximab can solve CFS mystery!!!

    Did you do anything special to get where you ae now or did the body itself fix it? Sry if you already told, I don't have the energy to read it all. :Sign Oops:
  26. Tia

    Astounding Norwegian research breakthrough with Rituximab can solve CFS mystery!!!

    Thanks for asking, Liquid. :) Unfortunally they're not treating it at all because the doctor says if they treat with tyreostatics, and the bloodworks (dont know the word for it) goes down, I could go hypo instead of as now; hyper, so they won't treat it. Therefore I have to live with all the...
  27. Tia

    Harvey Whittemore sued

    First Judy's a criminal and now this? Looks to me like someone's framing them. I don't think polititians wants us to get well because if they can have people on disability, depending on the government for survival and buying lots of drugs that go into the great drugcompanies, they make more...
  28. Tia

    BBC TV: The stories of five ME sufferers, their descent into illness and quest...

    http://www.youtube.com/watch?v=bB6B2BTL2zQ The whole video, an hour long, enjoy!
  29. Tia

    Astounding Norwegian research breakthrough with Rituximab can solve CFS mystery!!!

    Liquid. I'm curious.. I have Graves disease, that sounds just like it. I was told graves is when your body stops recognising it's own cells and attacks it's own organs..?
  30. Tia

    Astounding Norwegian research breakthrough with Rituximab can solve CFS mystery!!!

    Ooo, how exiting! :victory: Thanks for telling us! I was at this big university hospital recently and the doctor there which I saw for my Graves disease, knew about CFS and said his patiens had talked about this new norweigan discovery. he even knew about the B-cell thing when I mentioned it...