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

    To become a member, simply click the Register button at the top right.

Search results

  1. J

    Rituximab Phase III - Negative result

    Crap. Sorry to hear. I was one of the participants who received placebo. Obviously, I was devastated when I got the phone call / letter with the negative result of the study some weeks ago.
  2. J

    Is there any way I can be treated with rituximab privately?

    Do I understand you correctly that Rtx will not be equally efficient if given to CFS patients subcutaneously? I heard rumors that the next Rtx trial (i.e. an open-label trial for those who are receiving placebo in the current phase III trial, given that the latter is succesful) will involve...
  3. J

    Antibodies to ß adrenergic and muscarinic cholinergic receptors in patients with CFS

    Wow, that's so exciting! I'm keeping my fingers crossed. I hope you'll write about the trial here, unless you're not allowed to. How many participants are there? Is it a one-time treatment? Is the protocol available online? Rumors, more or less. And I know the Bodden story that is untypical in...
  4. J

    Antibodies to ß adrenergic and muscarinic cholinergic receptors in patients with CFS

    Interesting @Freddy. It's a weird feeling when your lab values are beyond what doctors have seen in their patients before. You're feeling kind of special while you're realizing that something is in fact very, very wrong with your body (in case you didn't notice that before, lol). You're not...
  5. J

    What has helped more with your sleep?

    Mianserin does the trick for me and has been working for around a year now. Mirtazapine worked equally well, but I gained a lot of weight within weeks (which was unusual for me - still trying to get rid of the extra kilos). I've tried numerous prescription and over-the-counter drugs prior to...
  6. J

    Antibodies to ß adrenergic and muscarinic cholinergic receptors in patients with CFS

    The total number of patients is high, but it's only 25 patients from the Rtx trial. From an open trial, that is. Yes, you're right about repeated treatment, at least from my layman's perspective :-) However, treatment of those with low antibodies is just as justified as it is for those with high...
  7. J

    EBV peptide test

    I heard from one of prof Scheibenbogen's patients that the test is supposed to be used for diagnosing an EBV-specific fatigue, regardless of PCR results. She seems to think that [a subset of?] CFS patients suffer from repeated EBV replications (complete or incomplete). I'm just quoting, I...
  8. J

    EBV peptide test

    I think that this is the new peptide test that Prof. Scheibenbogen has developed with JPT Technologies? https://shop.jpt.com/1-PepMix-trade-Peptide-Pools/8-PepMix-trade-Collections/1314-PepMix-trade-Collection-EBV.html It fits with their 2014 paper on the EBV immune response in CFS patients...
  9. J

    New Rituximab study results published!

    http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0129898 "Major or moderate responses, predefined as lasting improvements in self-reportedFatigue score, were detected in 18 out of 29 patients (intention to treat). Clinically significant responses were seen in 18 out of 28...
  10. J

    Methotrexate

    Unless your doctor IS prof Scheibenbogen, I would talk to her. I think she has tried it on some of her CFS patients. The infusions are cheap, too. But cyclo is definitely a "don't try this at home" drug. !!!
  11. J

    Hypogammaglobulinaemia after rituximab treatment—incidence and outcomes

    Oh, really? I thought you just put the needle right under your skin on your upper arm or leg or in your stomach fat and make sure you didn't hit any blood vessel? Is there more to it than that?
  12. J

    Hypogammaglobulinaemia after rituximab treatment—incidence and outcomes

    Didn't they give IVIG to some of the RTX patients in the third (?) study when their IgG levels dropped? Or where do I get that idea from? Well, it could be quite an interesting question to discuss for the Kogelnik patients.
  13. J

    D-ribose and post-exertional malaise question

    It could be a placebo effect but I've tried around 100 supplements and drugs, and D-Ribose seems to be one of the few that makes me feel a tiny little bit better. (I get no positive effect from coffee though, only an elevated heart rate which is no good when you already have a high resting HR.)...
  14. J

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

    At least they'll fit 20 patients or so into the cyclo study :) And I don't know how many of the 1500 patients fulfil the Canadian criteria, and how many were sorted out for other reasons. That's what I heard, too, but I also heard that they haven't come very far at all in Northern Norway? What...
  15. J

    Hypogammaglobulinaemia after rituximab treatment—incidence and outcomes

    Oh, I was always under the impression that IVIG patients would be more prone to side effects.. I know that the people at the Charité are using SCIG on their immunodeficiency patients (since it can be administered at home via a pump or rapid push), and it seems to be uncomplicated. The effect...
  16. J

    Øystein Fluge and Olav Mella interviewed on BBC Radio

    @Jonathan Edwards: How would you explain immunological (flu-like) symptoms by the Fluge/Mella theory?
  17. J

    Hypogammaglobulinaemia after rituximab treatment—incidence and outcomes

    Yes, that's the one I was referring to when I wrote "I have heard one single recovery story which involved treatment with Gammanorm only, but I am not sure how long that recovery lasted". She was supposed to give an interview some months ago and unfortunately had to be filmed while lying in bed...
  18. J

    Homeopathy "not good for anything" report says

    Personal experience is not a very scientific approach. Just because I don't respond to *insertyourfavouritemedicinehere* that doesn't mean that it's not effective. That's why we need large RTCs.
  19. J

    Homeopathy "not good for anything" report says

    The market for natural remedies is a lot bigger in Germany than in many other European countries. You won't believe how many well-educated Germans working in science actually pay a lot of money for homeopathic pills, Bach flower remedies (http://en.wikipedia.org/wiki/Bach_flower_remedies) and...
  20. J

    Hypogammaglobulinaemia after rituximab treatment—incidence and outcomes

    I'm equally thrilled about immunoglobulins as you are and really hope there will be a big trial soon, but from what I heard (talked to the Norwegian doctor who treated around 50 of her patients with Gammanorm) no one had an improvement that can be compared to improvement from RTX treatment...
  21. J

    Low-Dose Naltrexone and Th1/Th2 - Confused!

    @Wendi C : Just wondering.. on some LDN website, they claim that LDN is safe during pregnancy. What did your doctor say on this?
  22. J

    New pilot study in the loop from the researchers at Haukeland

    She does mention it to some patients as a treatment they could try, but I don't know if she actually has prescribed it to her patients.
  23. J

    New pilot study in the loop from the researchers at Haukeland

    The other pilot patients in the first RTX study? They didn't receive cyclophosphamide. The first patient received it as part of the BEACOPP cancer protocol (the C stands for cyclo). I don't know the dosage though.
  24. J

    Dr Bieger and Dr Mikovits discuss treating ME patients with Rituximab

    I know Fluge/Mella are looking at both IgG and subclasses, but I don't know for sure what would be an exclusion criterion. What are the risks with low IgG1? Risk for infections? Would that also apply for patients who normally don't have problems with recurrent infections?
  25. J

    Dr Bieger and Dr Mikovits discuss treating ME patients with Rituximab

    I think so too, and I'd happily take the risk, but from the preliminary results from the open phase 2 study (posted by @deleder2k in another thread) it looks like one of those patients also got considerably worse. This is a total mystery to me. I don't think disease severity would explain the...
  26. J

    New pilot study in the loop from the researchers at Haukeland

    Are you referring to IVIG or immunoglobulins in general? There's not only one, there's more of them who had significant improvement (they used Gammanorm i.m.), but only one story (now two including the RTX/Valcyte/immunoglobulin patient) made it to the press. I got the impression that about 50%...
  27. J

    New pilot study in the loop from the researchers at Haukeland

    @Freddy : Here's what Fluge/Mella wrote in the first RTX-paper from 2009: (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2711959/) They also write how MTX worked for the first pilot patient (slower than RTX). BTW, "patient no. one" also received cyclophosphamide but apparently didn't respond to...
  28. J

    Dr Bieger and Dr Mikovits discuss treating ME patients with Rituximab

    That's what I was thinking. But many CFS patients with low NK function AND reduced antibodies don't seem to be prone to infections at all - more the opposite. What about the Norwegian RTX trial(s) - were low NK function and/or hypogammaglobulinemia exclusion criteria? @deleder2k, do you know?
  29. J

    Dr Bieger and Dr Mikovits discuss treating ME patients with Rituximab

    At least this is good news for those with low NK cytotoxicity! :-) As far as I know, no one has received RTX treatment from Dr Bieger. I'm quite surprised to read that dosage was too high for the ten German patients who received RTX. Olaf Bodden received it from Prof Scheibenbogen, as he...
  30. J

    Dr Bieger and Dr Mikovits discuss treating ME patients with Rituximab

    @Jonathan Edwards: I remember that some researchers looked into the FCGR3A receptor gene variants for predicting response to RTX in RA - and found quite some differences. Why don't they do that for CFS patients? Here's the paper: http://www.ncbi.nlm.nih.gov/pubmed/23002160 What would be your...