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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. deleder2k

    alcohol helps me?

    Does anyone have any new thoughts on this in light of the Long Covid epidemic? Some speak about micro clots. After I got ME alcohol made me feel healthy for the night. For the 2-3 next days I felt better. Without alcohol I could feel the lactic acid after walking 200 meters. With 0.5 litre of...
  2. deleder2k

    Rituximab Phase III - Negative result

    I'm not sure if that is what he meant...? 151 patients included in the study. That means that approx. 75 patients received Rituximab. 2% would then be 1 and a half patient. If there was in fact 2% response rate adjusted for placebo I don't think that that will tell us anything, unless the...
  3. deleder2k

    Rituximab Phase III - Negative result

    Thanks, @FMMM1. Perhaps this is a task for the EMEA? European ME Alliance. FMMM1; A (small) subset like myself benefit extremely from alcohol (ethanol). After drinking a lot all my pain vanishes, my dizziness almost disappears (!), I feel better in my stomach, my joints stop to crack, the pain...
  4. deleder2k

    Rituximab Phase III - Negative result

    Perhaps Rituximab (Rituxan in Northern America, Mabthera in rest of the world) can help a very small subset, but it won't be many. Remember that the group who got Rituximab in the study did not get better than the group who got placebo. If, say, the placebo rate was 20% and the Rituximab rate of...
  5. deleder2k

    Rituximab Phase III - Negative result

    What a story! It could very well that you're given cyclophosphamide. I think that is standard for breast cancer. I am baffled why so many is sure that rtx works. If it worked on say 15% it should have showed up in the study, shouldn't it? The study showed no difference between patients who got...
  6. deleder2k

    Rituximab Phase III - Negative result

    But how many ME patients diagnosed after the CCC will have "autoimmune dysautonomia"? I have not read much about it, but how does it relate to ME? If say 40% of patients with ME had it and rituximab did help a significant group of patients we would probably have seen a positive result in the...
  7. deleder2k

    Rituximab Phase III - Negative result

    It is discussed here: https://forums.phoenixrising.me/index.php?threads/dr-bieger-and-dr-mikovits-discuss-treating-me-patients-with-rituximab.35955/ To be brief: Much of what is said here is wrong. We also know much more today about RTX for ME. I saw your comments about a CD19/CD20 test. There...
  8. deleder2k

    Fast heart rate while sleeping, wakes me up

    I also suffer from this problem. I doesn't happen every day. Probably more like a few times every month. My pulse goes up from 55-60 to 120-130. My Apple Watch recorded a pulse of 125 from 5 am to 11 am. At 4 am when I also was asleep my heart rate was 57. I also suffer from a blocked nose. It...
  9. deleder2k

    Cyclophosphamide in ME/CFS Part A:an Open Label Phase-II Study With Six Intravenous Cyclophosphamide

    We only know that someone has gotten better. Some got worse. Worse than one would expect for individuals with cancer. They've started phase B of the study, but I think only 3 patients have been treated. To my understanding part A will be published after the RTX study. I could be wrong, but that...
  10. deleder2k

    Rituximab Phase III - Negative result

    The result was positive. We were discussing the phase 2 double-blinded study from 2011. The primary endpoint at 3 months was not met, but patients were kept blinded and there was a major effect at 6 months. We don't know the exact results for the latest multi-centre trial. We only know that it...
  11. deleder2k

    Rituximab Phase III - Negative result

    But all patients that responded did have ME according to the CCC in both phase 2 trials.
  12. deleder2k

    Rituximab Phase III - Negative result

    This is not accurate. From the open-label study: Or do you mean that the way the recruited patients would have made a difference when everyone did fit CCC? Remember that if you have ME according to the CCC you also have it according to Fukuda 99.99% of the time (or 100%?) Edit: In a study 55%...
  13. deleder2k

    Rituximab Phase III - Negative result

    Thanks. Non responder. No effect whatsoever. Perhaps I should change my profile picture? :) To be honest I think that some patients that participated in the study got worse. It is very tough to go back and forth to the hospital. Some had to catch a flight to do it. Lets hope that most patients...
  14. deleder2k

    Rituximab Phase III - Negative result

    Some thoughts from doctor Maria Gjerpe. She was one of the first patients to receive an infusion with rituximab. I hope Google translate does an okay job...
  15. deleder2k

    Terrible Wikipedia article on MECFS! (CBT, etc)

    Isn't the CDC change and BMJ best practice worth mentioning? At least one should be able to point out that one research has not shown that CBT leads to a increase in physical capacity
  16. deleder2k

    Terrible Wikipedia article on MECFS! (CBT, etc)

    The article is very troubling. " Evidence suggests that cognitive behavioral therapyand a gradual increase in activity suited to individual capacity can be beneficial in some cases.[5][6] In a systematic review of exercise therapy, no evidence of serious adverse effects was found; however data...
  17. deleder2k

    Ms Crawley 17th Nov in Exeter Mood Disorders: New research in ME research

    Oh mood disorder. Sure ME isn't an eating disorder?? Or a disorder for kids who are obsessed with video games? This got to be a joke.
  18. deleder2k

    Dr David Tuller 13th Nov: Trial by Error: the surprising new BMJ Best-Practice Guide

  19. deleder2k

    Dr David Tuller 13th Nov: Trial by Error: the surprising new BMJ Best-Practice Guide

    BMJ Best Practice - Chronic Fatigue Syndrome
  20. deleder2k

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

    I am rather certain they'll say something about the study.
  21. deleder2k

    oh alcohol....

    I've tried pyruvat supplement from iHerb. Didn't help. What else can those of us who respond to alcohol try?
  22. deleder2k

    oh alcohol....

    I experience the same. I had trouble standing on my feet for 5 minutes. Pain, cramps, dizziness. After 1.5 bottles of wine I could walk several miles and go dancing for hours. Very strange.
  23. deleder2k

    STUDY: Did you have your wisdom teeth removed?

    Had three removed. Don't know the purpose of this thread though...
  24. deleder2k

    ME on BBC news this morning

    Thank you so much, dr. Shepherd. You're fantastic! Best regards from The Kingdom of Norway (also known as the country of Rituximab)
  25. deleder2k

    ME on BBC news this morning

    BBC World Service is brilliant. 150 million listeners. That's not bad. Here is the interview which aired on BBC this morning. It is accessible for those outside The United Kingdom, i.e everyone:
  26. deleder2k

    Study showed no serious side effects of Lightning Process

    @anni66, The Norwegian Directorate of Health recommends Canadian criteria, so that is definitely a good point. She refers to the SMILE study where all sorts of tired kids were included.
  27. deleder2k

    Study showed no serious side effects of Lightning Process

    Daily debate about ME in Norway's largest newspaper. Been going on for a month or so. Quick translation by Google and I. If something is unclear please ask. She and CBT doctors has bashed out when the Norwegian ME association has referenced their own survey. They won't accept it, since it is...
  28. deleder2k

    General ME-related news from Scandinavia

    I've heard from a source that they're looking at publishing the rituximab study before the cyclo study. I have not been able to verify it yet, but it sounds plausible. If the rituximab study is positive, then publishing cyclo afterwards would get much more attention. That's all I know. I'll...
  29. deleder2k

    General ME-related news from Scandinavia

    A very bad article in Aftenposten today. "Misinformation about ME may scare patients away from documented treatment"...
  30. deleder2k

    Exercise therapy is a beneficial intervention for chronic fatigue syndrome (PEDro synthesis)

    "Although there was limited information, exercise may not worsen symptoms or cause serious side effects." in the future medical students will learn about the errors that the scientific community made with respect to ME. Statements like that is a disgrace and harmful to patients.