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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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Search results

  1. Benji

    Amisulpride — A Multipurpose Drug for ME/CFS

    @Hip Do you still have the same benefits from Amisulpride?
  2. Benji

    Abilify- Stanford Clinic Patients

    I am coming here, as it is more life in the Abilify discussion here than on science for ME, and i have an ancient account here too. I started Abilify in february/mars and I had good improvement. However in doses of 2mg it stopped working. but as I went down again on the doses, the benefits came...
  3. Benji

    My ritux experience so far

    I mean I have had great periods, since I startet. December last year was the best I have had for years. When I get better I have my boys more with me. Last desember I spoilt them, took then to cinema, megafun, and brought buddies too. i made them advent-calendar 1 present each day. I told my x...
  4. Benji

    My ritux experience so far

    Everything seems a little different now that the phase 3 result is negative. I really am interested in the report/publication to help decide whether I should take more infusions. But it won’t be available for some months yet. I have planned my last infusion mid December and have booked it on...
  5. Benji

    Rituximab Phase III - Negative result

    Get out of bed, hahahah. That’s a good one. It was «gå i spenning», which means be waiting in excitement and uncertainty.
  6. Benji

    Rituximab Phase III - Negative result

    Sorry for the big picture
  7. Benji

    Rituximab Phase III - Negative result

  8. Benji

    Rituximab Phase III - Negative result

    30 million kroner, which is 3 mill pounds. Charity (Kavlifondet) donations and the Norwegian state.
  9. Benji

    Will the results of the Phase III Rituximab trials leak before publishing?

    Uh, now I checked what they are going to speak about. Mella: "While we wait for RituxME": Summary of National and International ME Research on Autoimmunity and Metabolis“
  10. Benji

    Will the results of the Phase III Rituximab trials leak before publishing?

    Yes. It is so good to see that the ME patient organisation, the department of health and the national competence center for ME is doing this together. They hope to start a Nordic collaboration of research into ME. If this is successful. The next day, 21. Of November they will have a “topic...
  11. Benji

    Rituximab: what level of recovery is possible?

    One of the pilot patients for open label study which Murph links to, is still healthy with more than a 100% job, in the norwegian Health Department. She hasn’t had relapses as far as I know, so been well for some years now. One of the patients in the study above said to me that there are a few...
  12. Benji

    Will the results of the Phase III Rituximab trials leak before publishing?

    There is a Research Conference, in Oslo.20. November, with norwegian and nordic researchers in ME.I dont know whether Fluge And Mella will attend. But maybe? And maybe they will come with a hint? We’ll see.
  13. Benji

    Will the results of the Phase III Rituximab trials leak before publishing?

    The participants now know what they got. They were informed quite soon after the study finished. I think they’re told not to share? I don’t know.
  14. Benji

    Will the results of the Phase III Rituximab trials leak before publishing?

    That is true. Although It seems that everyone is even more conscious about not leaking anything now, when the publishing is not so far away. But is there a research meeting of conference quite soon, where F & M will attend? I dont know.
  15. Benji

    "Got ME? Just SMILE!" - Media coverage of the SMILE trial…..

    I have not seen it, so far. But the SMiLE trial have far better results for boys than for girls at 6 months. If anyone would like to make that point, they could. For example ask how she sees that point. If they would make a new study, to just have boys in it? quite humoristic.
  16. Benji

    "Got ME? Just SMILE!" - Media coverage of the SMILE trial…..

    If anybody gets a chance, it would be nice to have Ester Crawleys comment about the fact that SMILE trial shows us that LP works for boys, but not for girls.
  17. Benji

    "Got ME? Just SMILE!" - Media coverage of the SMILE trial…..

    NO OBJECTIVE OBJECTIVES. The basis for the power measurement in the study is the participants' own reports in the questionnaire, on the level of functioning, pain, anxiety, depression and school attendance. All goals are self-reported, and in addition to school participation, they are based on...
  18. Benji

    "Got ME? Just SMILE!" - Media coverage of the SMILE trial…..

    Here is our smile-article, Google translate The results from a new study, SMILE, suggest that the Lightning Process (LP) training program has a positive effect for young people with ME / CFS. The CFS / ME Competition Director, Ingrid Helland, says she is very excited that the study is...
  19. Benji

    Kolibri contact

    Also; everybody in Norway speaks fluently English, using English language should work very well.
  20. Benji

    Kolibri contact

    Hi! Yes, it is 1000mg the first and second infusion, and then 500mg months. The prize is already here I see. This is the mail I am using at Kolibri IngerKristin@forusakuttenkolibri.no I am happy to help. I also speak French.
  21. Benji

    My ritux experience so far

    @Gingergrrl I am so happy to see you here, and that you continue ritux with the first maintenance dose. So good to hear! And also that you share your knowledge, I am so impressed that you know so much. And I am also happy that you guys discuss here, even if I will have to read some later. You...
  22. Benji

    My ritux experience so far

    That is so interesting. For many, rituximab helps a lot, but don't get 100 % healthy. So antivirals sounds very interesting to battle the "rest-disease". I don't how what my case will show in the end. I still have no response (yet), after the infusion late may. I have my next and last infusion...
  23. Benji

    "Got ME? Just SMILE!" - Media coverage of the SMILE trial…..

    In table 3 it seems that a lot of n's are around 30 out of 50 people. 60% is not much?
  24. Benji

    "Got ME? Just SMILE!" - Media coverage of the SMILE trial…..

    Yes; that is one of the obvious things. They chose to move away from the objective measure, and use questionnaire instead. And not explaining why. Not very impressive. This is one of our major points. Also, I think there might be a point in pointing out that the missing data, which are set to...
  25. Benji

    "Got ME? Just SMILE!" - Media coverage of the SMILE trial…..

    Can I ask again, about the SF 36 physical function data. They go up from 53/56 up to 70-80. Is that much? Is a increase of 10 much better quality of life?
  26. Benji

    My ritux experience so far

    I have not heard anything lately. Before summer? There was one of the center in a News article, that they had 7-8 people remarkably improving, out of a total of 32 (16 placebo, 16 ritux) It is quite quiet about the ritux study in media, but much ME pubiisity, where Wyller and Vogt and other...
  27. Benji

    "Got ME? Just SMILE!" - Media coverage of the SMILE trial…..

    @JohntheJack Thank you so! much.
  28. Benji

    My ritux experience so far

    I'm hoping too. I am a little better today, but not anywhere around when I had response. Yet. We'll see. I will be very happy when I can say that I am better again, and won't hesitate telling.
  29. Benji

    "Got ME? Just SMILE!" - Media coverage of the SMILE trial…..

    Thanks for you hjelp. I really appreciate it. We are trying to get an article in a journal in Norway and are checking out a lot of things. This article with comments are really informative From this...
  30. Benji

    "Got ME? Just SMILE!" - Media coverage of the SMILE trial…..

    Hi, I have not read the thread. But I have a question that someone might be able to answer...I discuss a little with a pwME who knows statistics...she said that it would be really helpful to judge the SMILE trial if we have an organization asking for the data. That we would see more clearly. Do...