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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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. Adele

    Low-dose naltrexone (LDN) - how's it working for you?

    Sorry to hear that :( But good that it at least has some remaining effect.
  2. Adele

    Low-dose naltrexone (LDN) - how's it working for you?

    That is great @daisybell ! :) Has the improvement continued?
  3. Adele

    I had Rituxan and I feel amazing

    So happy to read your story @Rebecca2z! :) There should be more doctors like that who are willing to try different things off label to help their patients. I really don't understand why there are not more doctors e.g. in Europe who give their patients the option of Rituximab. Of course at...
  4. Adele

    New pilot study in the loop from the researchers at Haukeland

    @Joolz and everyone else - that is a question we can all play around with I guess :) We could all make a "choice" the same way deleder can (or can't actually… ) From what the rumors say, both drugs gave equal results for the pilot patients. Rtx has proven good results also in the next round...
  5. Adele

    New pilot study in the loop from the researchers at Haukeland

    And PEM is one of the biggest symptoms for many of us... It would be so interesting to hear more of your thoughts around this @Jonathan Edwards . Is there a particular reason why just this symptom is so puzzling?
  6. Adele

    New pilot study in the loop from the researchers at Haukeland

    Good point @deleder2k . I also look forward to hearing what this study will possibly tell about the mechanisms behind the illness. Does it "complete" the Rituximab-clues, or is it in some way confusing? And - why did they start trying out exactly this drug? Have they had an me-patient...
  7. Adele

    New pilot study in the loop from the researchers at Haukeland

    I wonder what dosages they will use in the study. From what I have been reading, the potential side effects are more serious for higher doses. And also - it says that the project doesn't end until 30.06.17. I wonder why, as the infusions will only go on for 24 weeks, which is more like 30.06.15.
  8. Adele

    New pilot study in the loop from the researchers at Haukeland

    I didn't guess anything, because I don't have a clue about different drugs. But if someone who does would care to explain how this works, and maybe also compared to how Rituximab works, that would be very interesting and appreciated :)
  9. Adele

    New pilot study in the loop from the researchers at Haukeland

    Google translation from norwegian Cyclophosphamide for myalgic encephalomyelitis / chronic fatigue syndrome (ME / CFS) Scientific title: Cyclophosphamide BY myalgic encephalomyelitis / chronic fatigue syndrome (ME / CFS) Part A, for up to 30 patients with ME / CFS: An open phase II trial with...
  10. Adele

    New pilot study in the loop from the researchers at Haukeland

    And there it was. Cyclofosfamid. Thank you @SaraEngland https://helseforskning.etikkom.no/ikbViewer/page/prosjekterirek/prosjektregister/prosjekt?p_document_id=525361&p_parent_id=527700&_ikbLanguageCode=us
  11. Adele

    Norwegian Rituximab study - An update by the Norwegian ME association 2014.11.09

    That would of course be the very best solution! That would then probably both give patients earlier access to the drug which works at the same time as the study of the long-term results would continue. Now I already know what my Christmas wish for 2015 is :)
  12. Adele

    Norwegian Rituximab study - An update by the Norwegian ME association 2014.11.09

    Thank you @Sherlock that is very interesting. That drug demonstrated around 50% effect and was halted for efficacy. Wonder what will happen in about a year if Rituximab shows to have 60-70 % effectiveness also in this phase III trial.
  13. Adele

    Norwegian Rituximab study - An update by the Norwegian ME association 2014.11.09

    I have also been told this. The explanation was that the ethical committee can axe the study if they find that the preliminary results are so good that it is seen as unethical to let the study continue without giving the drug to everyone. It would be very interesting to know exactly how good...
  14. Adele

    New pilot study in the loop from the researchers at Haukeland

    The world is full of social media and people debating ongoing medical research. If this could ruin the research, I guess special secrecy-restrictions would have been applied long ago. In an earlier thread there was some concern about debating someones experience while participating in a study...
  15. Adele

    New pilot study in the loop from the researchers at Haukeland

    if this info is right, then the study may have to do with something that actually works…, which Enbrel didn´t?
  16. Adele

    New pilot study in the loop from the researchers at Haukeland

    Thank you so much @deleder2k for this information! Extremely excited to hear more! :)
  17. Adele

    Chronicle today on ME by six Norwegian professors.

    I have tried the Lightning process, and to me it gave no positive effect whatsoever. It was simply confusing and disturbing (and expensive). Their big "secret" - that there is a mind-body-connection (really….), and how they teach it is at a sad and low level for anyone who has had a conscious...
  18. Adele

    Chronicle today on ME by six Norwegian professors.

    I can still open it by clicking on the link I posted above @optimist . But it may be for subscribers only? Some of Aftenpostens articles are I think.
  19. Adele

    Chronicle today on ME by six Norwegian professors.

    Here is the link to the norwegian article http://www.aftenposten.no/meninger/kronikker/Kronikk-De-ME-syke-fortjener-serios-forskning-7808915.html
  20. Adele

    Chronicle today on ME by six Norwegian professors.

    I´m glad you liked it too. I don't think the authors have produced an english version, and I don't trust my own english skills enough to try to translate it in any more "official manner". But there may be another norwegian at the forum who does?
  21. Adele

    Chronicle today on ME by six Norwegian professors.

    The chronicle is published today in Norways biggest non-tabloid newspaper (Aftenposten) Translation is mainly by Google translate with a few attempts from me to correct the strangest results of this. Chronicle: The ME sufferers deserve serious research Now we need politicians, health and...
  22. Adele

    Bingo!

    file://localhost/Users/adeleid/Pictures/iPhoto-bibliotek.photolibrary/Masters/2014/11/27/20141127-143957/Bingo.jpg I guess quite a few people here could say Bingo… ;)
  23. Adele

    Rituximab study in norway. An application to The Research Council of Norway

    Well, if it shows up that around 50 people (+ some for the placebo-part) start making significant progress in about 6 months time or so, then I think one will get some sort of a feeling. That might show up as wrong in the end of course, but I don't think I would be the only one starting to feel...
  24. Adele

    Rituximab study in norway. An application to The Research Council of Norway

    I totally agree with you NK17 in that the last thing we want to do is anything that could be unhelpful to the study. But on the other hand I don't really see how we can possibly do that by thinking out loud or speculating around it. If one was to worry about an "added placebo effect" if...
  25. Adele

    Rituximab study in norway. An application to The Research Council of Norway

    Yes, lets absolutely hope so! 2,5 years is waaaay to long a wait for something so fundamentally important to many of us! And that comes from me, who am a total newbie in this "game" compared to many here. Most of you will have been waiting for such results longer than I even want to think of...
  26. Adele

    Rituximab study in norway. An application to The Research Council of Norway

    That could of course be as soon as the researchers have got any material themselves. In this lecture (unfortunately in norwegian) , Mella reveals some at that time unpublished findings from the follow-up studies after the phase II trial. But as the phase III study is double blinded I guess they...
  27. Adele

    Rituximab study in norway. An application to The Research Council of Norway

    Does anyone have any thoughts about whether it is probable that some sort of results will "leak" out of this study before it is final in 2017? I know that neither the participating medical staff nor the participants will know who got the drug and who got the placebo, but if several of the 150...
  28. Adele

    Medical Tourism - Options

    You may have seen this or similar sites, but these people might know where to start or where to turn http://www.medical-tourism.com
  29. Adele

    Medical Tourism - Options

    That is an interesting topic @nomad . With the large population of CFS/ME-sufferers in the western world, it is surprising that there are not medical communities in low-cost countries who have taken the opportunity in this. From what I know e.g experimental cancer treatment is big business...
  30. Adele

    Effect of Rituximab in ME vs in other autoimmune diseases

    The findings from the studies of Mella and Fluge so far suggests that Rituximab has a moderate to very good effect in around 2/3 of ME-patients. Out of that one can speculate about whether the remaining 1/3 might not have an autoimmune disease, or whether their autoimmunity is just of a kind...