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What do you want to ask Fluge and Mella?

Discussion in 'Rituximab: News and Research' started by Maria Gjerpe, Mar 10, 2013.

  1. Maria Gjerpe

    Maria Gjerpe

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    Hi there,

    Is there anything that you would like to ask Drs.Fluge and Mella, if you could?

    I´m visting Haukeland Hospital next week, and might have time for a short interview. If so, I´m writing an article for Phoenix Rising which might answer some of your questions, if you have some. I do not know what you wonder about.

    Today is sunday. I will come back and look in this section for questions from you on Tuesday. Shoot!


    (Who am I? I´m a pilotpatient at Haukeland Hospital and a major responder to Rituxan. I am also an educated medical doctor.

    I know that my time as well and healthy is limited, and use all my regained health to make sure the science and the search for knowledge continue.

    I started the initiativ MEandYou, which has a goal to crowdfund 7 million NOK, for financing 140 ME-patients for The Haukeland Study, phase 3, in 90 days. We can to this. Together. MEandYou. This is only about money.

    Please watch the movie I made about the initiativ.
    Thank you.

    MEandYou at YouTube
    MEandYou on Facebook
    MEandYou English site

    I´ll tell you more about the MEandYou-initiativ in an article later.

    High Five!)

    And, dear ME-fellows - I´m sorry. I do not have the capacity of answering questions about my treatment and health right now. I´m 100% focused on MEandYou 24/7. I hope you understand, even though I fully understand your need for info.
    Valentijn, JAH, Svenja and 3 others like this.
  2. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Marianarchy, Maria Gjerpe and justy like this.
  3. snowathlete

    snowathlete

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    I'd like to know more about their thoughts on autoimmunity. How they think it might come about.
    SOC, Maria Gjerpe and justy like this.
  4. dasiymay

    dasiymay Senior Member

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    I'd like to know if they think it is possible that autoimmune diseases could be caused by hitherto unknown infections in those diseases.
    Thanks.
    Maria Gjerpe likes this.
  5. Helen

    Helen Senior Member

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    Hi Maria,

    It is a fantastic story you tell about the effect you have had of the treatment. Thank you for sharing with us.

    Maybe you think I am too critical, but I just have to ask you what your comment is on Rich Van Konyneburgs theory why the treatment works, and the risks with it. We are many who have had gene defects confirmed in the methylation cycle and in the Phase I and Phase II liver detoxification. Some of us have also had the methylation capacity evaluated in a lab panel from Vitamin Diagnostics. Low reduced glutathione, low folates ...

    Of course it would be very interesting to get a comment from the researchers on Rich´s theory too. Do they test for anything like what is in a methylation panel as reduced glutathione before and after treatment e g?

    Wish you all the best from your next treatment!
    Helen



    merylg and Maria Gjerpe like this.
  6. ukxmrv

    ukxmrv Senior Member

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    I would love to know

    1. Does Rituxan show any signs of being more or less effective in patients with an acute viral onset to their disease

    2. Does Rituxan show any signs of being more effective in patients with a EBV onset

    3. Have you made an changes to the protocol you reported in your initial papers (and would you like to)

    Thank you Maria!, very good of you. Wonderful work and I'm really grateful.
    merylg, Maria Gjerpe, beaker and 2 others like this.
  7. SOC

    SOC Moderator and Senior Member

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    Thanks for doing this, Maria!

    I don't have any specific questions at this time, but I would be pleased if you would pass on my immense appreciation for their work and their dedication to helping us. :)
  8. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    The relevance they see in natural killer cell function in cfs/me as well as other autoimmune conditions as well as chronic viral infections and the impact rituxin has on nk function??

    cheers!!
  9. Blue

    Blue

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    I would be interested to know if Mella and Fluge can already say s.th. about maintenance regimen (how often, how long, which dosis) after having finished the 15 month protocol. Could this be for example similar to patients with rheumatism?

    Many thanks for what you are doing!:)
  10. Purple

    Purple Bundle of purpliness

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    These are some of the things that interest me a lot too. Especially seeing there are links between EBV and Lymphoma and Rituximab being used in Lymphoma,

    Some other things I would like to know:
    - is autoimmunity the only explanation for responding to Rituximab
    - if autoimmunity is supposed as the explanation, any ideas what the autoantibodies are directed against (and is there a search for these?)
    merylg, Maria Gjerpe and justy like this.
  11. Waverunner

    Waverunner Senior Member

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    Thank you, Maria. Two very important questions in my eyes would be:

    1. Do they have any marker that predicts, if a patient is more likely to respond?
    2. Is CFS an autoimmune or an infectious disease?
    merylg and Maria Gjerpe like this.
  12. Svenja

    Svenja

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    Thank you for your great fundraising initiative! :)

    My question is, if objective assessments like pedometers will be used in the trial?

    And I would like to know more about the ongoing trial in very severe ME.
    merylg, Maria Gjerpe and ukxmrv like this.
  13. Sasha

    Sasha Fine, thank you

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    Hi Maria - thanks so much for doing this! I'm very glad you've had such a good response to Rituximab and I hope you might be one of the patients who stay well.

    I think this is a great approach to interviewing ME researchers - to ask other patients what they would like to know, as well as having your own questions. I think that's a very good model for interviews!

    I have a question. As I expect you know, the Open Medicine Institute have a priority list of ME research projects that they would like done (Drs Fluge and Mella are signatories) and the first on their list is this one:

    http://openmedicineinstitute.org/research-initiatives/mecfs-merit/

    OMI-MERIT Priority Projects
    1. Treatment: Phase 1: A Large-scale, Randomized, Placebo-controlled Trial of Rituximab and Valgancyclovir
      • Goal: This rigorous, four-armed study will examine and further validate two of the most promising therapies in the field by comparing placebo, rituximab alone, valgancyclovir alone, and combination therapy of valgancyclovir plus rituximab. Measurements of physiologic, genomic, virologic, and immunologic markers will be made throughout the course of the trial.
      • Importance: A large-scale, rigorous trial is needed to confirm the initial findings of earlier smaller studies and move ME/CFS to a molecularly trackable disease. Success of such a trial could move ME/CFS to a mainstream process for additional diagnostic and treatment trials.
    In the US, Valganciclovir (Valcyte) is being used by Drs Montoya, Lerner, and Kogelnik and others for the treatment of people with ME who have high titres of HHV-6 (and/or EBV?). I could understand a trial with placebo, Valcyte only and Rituximab only but I'm wondering about the logic of the fourth arm with both Valcyte and Rituximab. I thought that Rituximab wiped out B cells (?) and that its success in people with ME maybe indicated some kind of autoimmune disease, whereas Valcyte prevents replication of humanherpes viruses and might work because people with ME have high levels or reactivated virus.
    It seems like a strange collision of two therapies in a single trial. Is there some reason for thinking that it would be a good idea to use these two drugs together?
    I'm wondering if Drs Fluge and Mella think that viruses such as HHV-6 are strongly implicated as causing part of the symptomatology of ME as well as there being an auto-immune component.
    I'm not at all knowledgeable about biology so if my question is rubbish and you think you can put a better version of it to Drs Fluge and Mella, please feel free!
    merylg, Maria Gjerpe and justy like this.
  14. Mark

    Mark Acting CEO

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    I'm just starting collating these questions for Maria to take to Fluge and Mella tomorrow. So if you have any further questions, you have less than 3 hours to post them. And please note there is no guarantee that they will have time to answer our questions, we are just hoping they will be able to do so.
    Maria Gjerpe likes this.
  15. Gemini

    Gemini Senior Member

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    Just saw the post, hope its not too late for questions:
    1. In Rituxan responders which immune system markers normalize?
    2. Do you test for hypogammaglobulinemia and hypergammaglobulinemia?
    merylg, Maria Gjerpe and ukxmrv like this.
  16. rebar

    rebar

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    I may be too late but, what are the biological markers for responders?
  17. Mark

    Mark Acting CEO

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    Too late for these last two, I'm afraid. Sorry about the short notice on this, but it couldn't be helped. Rebar, I think your question may already be covered. We may conceivably have another chance to ask further questions, but at the moment there's no guarantee that Fluge and Mella will even have time to answer the first group of questions.
    Maria Gjerpe and ukxmrv like this.
  18. meg_pollock

    meg_pollock

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    I'm aware I'm too late, but will post anyway, just in case it's something you can bring up later. There are two issues on my mind just now: 1) Hashimoto's thyrioditis has links to atypical coeliac (e.g. Hadithi et al., 2007, World Journal of Gastroenterology, 11, 1715-1722). Do Fluge and Mella reccomend patients with CFS and Hashimoto's try going gluten-free before looking at more invasive options? And 2) maybe the Rituximab non-responders have a problem with T-cells, not with B-cells? Many thanks...
    merylg likes this.
  19. Maria Gjerpe

    Maria Gjerpe

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    Thank you for your overwhelming interest!
    Mark suggested I would try to make an interview with Fluge/Mella, if that was possibly.

    I spoke to Fluge today. I sent him all your warm regards and appreciation, but due to a lot of interest from the media in the MEandYou-initiative and meetings for the Drs, we did not have time to an interview this time, unfortunately. They are both Drs with a little time to spare. Remember; besides doing clinical trials on ME, they have both full-time job at the cancer-ward, and they have been doing this for years - just because they are curious. Impressing! I´think that what the doctors would like to do, at the time being, is use all their possible time to focus on their work - and that is in our benefit-in the end.
    But your questions are here, for me to find them, if there will be any opportunity next time I meet them. Thank you!

    What I do know, is that Fluge/Mella are always looking for new traces and change in directions, or add some, along the path. This is what science is about, as you of course know. Questions-answers-questions-answers and so on. I, myself, do not want to dedicate myself to discuss hypotheses anymore. I just want us to start here, at this promising, but small, trial, because I think its important to continue looking in this direction.

    I´ll write you an article about the MEandYou Association, if you like, later.
    Valentijn and Sasha like this.
  20. ukxmrv

    ukxmrv Senior Member

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    Thanks Maria. We'll have the list of question for maybe some later date. Quite understand how the pressure of work and media would be using all of their time.
    The important thing is that you thanked them.
    Will look forward to your blog.

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