The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
Discuss the article on the Forums.

RituxME

Discussion in 'Active Clinical Studies' started by Tombo, Dec 4, 2014.

  1. Tombo

    Tombo

    Messages:
    6
    Likes:
    63
    Oslo, Norway
    I happen to be married to one of the subjects included in the Fluge/Mella study which is now initiated (Phase 3). I believe their work will be groundbreaking both in terms of possible treatment options and the understanding of mechanisms underlaying the condition. I think it is only a matter of time before ME is properly understood and also treatable. We actually live in the very city, the city of Bergen, where these doctors began their work. What would be the odds...
    They explore further the possibility of endotel dysfunction as a diagnostic tool, they explore gastric malfunctions, register activity levels (subjects are wearing a device that saves all information related to activity level during a week), they explore family genetics etc. And, from what I gather, Rituximab is not the only medication being considered, thus possibly enabeling a wider range of treatmant options in the future for those that do not benefit from having Rituximab infusions: It may just be a matter of finding the right medication, which is not uncommon for other autoimmune diseases.
     
  2. deleder2k

    deleder2k Senior Member

    Messages:
    1,094
    Likes:
    4,682
    Kati, NK17, catly and 1 other person like this.
  3. Tombo

    Tombo

    Messages:
    6
    Likes:
    63
    Oslo, Norway
    Thank you! It is a great privilige being included in the trial, as there are som many people that are severly ill. We are also aware of the risk of being disappointed, either because of receiving placebo or failure to respond to the medication. However, despite how my husband responds, the trial is immensely important. It is a bit like being part of (medical) history as it is unfolding.
    I thank you for helping me navigate :) Some time have passed since the last time I used this forum, and all the information is a bit overwhemling at first. I might post some "tidbits" occationally as the trial procedes. My spouse's first infusion is only a couple of days away now...
     
    Theodore, Kati, catly and 8 others like this.
  4. lansbergen

    lansbergen Senior Member

    Messages:
    2,410
    Likes:
    2,397
    I can not find what endotel is. Do you mean endothelium?
     
  5. NK17

    NK17 Senior Member

    Messages:
    592
    Likes:
    1,516
    Welcome back to the forum @Tombo, I wish you and your husband the best outcome by taking part in the clinical trial.
    You couldn't say it better:"it is a bit like being part of (medical) history as it is unfolding".
    Do keep us posted and good luck again :hug:.
     
    Tombo, Gingergrrl, catly and 3 others like this.
  6. helen1

    helen1 Senior Member

    Messages:
    967
    Likes:
    1,337
    Canada
    Very interesting and exciting @Tombo. Thanks so much for letting us know and please keep us posted! Good luck to you both.
     
    Tombo and deleder2k like this.
  7. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    8,927
    Likes:
    22,060
    USA
    @Tombo best wishes to you and your husband and please keep us posted!
     
    Tombo likes this.
  8. Tombo

    Tombo

    Messages:
    6
    Likes:
    63
    Oslo, Norway
    Yes, it should of course have been endothelium dysfunction :)
     
  9. sillysocks84

    sillysocks84 Senior Member

    Messages:
    445
    Likes:
    345
    @Tombo how is the trial going. If you can't disclose that info, don't. I am excited that research is being focused on me. It looks like they are interested in being thorough too. Good luck! Are they finding this treatment helpful in pots and dysautonomia issues?
     
    Theodore and catly like this.
  10. Tombo

    Tombo

    Messages:
    6
    Likes:
    63
    Oslo, Norway
    Hi! The trial is progressing nicely, with only one center lagging slightly behind (it is a multi-center study). It is certainly exciting days for the ME community, considering new research carried out in several corners of the globe :) The first subjects in the trial will have their last injection in December, I believe, but they will still have to fill out reports for one more year. Fluge/Mella has another trial going as well, as you probably know:
    http://www.shoutoutaboutme.com/about-mecfs/cyclophosphamide-trial-for-me-gets-underway/
     
    Theodore, helen1, catly and 2 others like this.
  11. mango

    mango Senior Member

    Messages:
    895
    Likes:
    4,858
    article in norwegian, published 3 december 2015.

    it's about the RituxME trial, from one of the hospitals that are taking part in it.

    http://www.nrk.no/telemark/forsker-pa-ny-me-medisin-1.12686017
     
  12. Kati

    Kati Patient in training

    Messages:
    5,424
    Likes:
    19,311
  13. A.B.

    A.B. Senior Member

    Messages:
    3,549
    Likes:
    21,529
    Notodden researching new ME-medicine
    Notodden hospital is the only local hospital in a research project to determine if a new drug works positively for Norwegian ME patients.

    Hanne Thürmer and her colleagues at Notodden follow up 32 of the 152 ME patients in the study, writes Telemark Hospital on their websites.
    - My hope is that we will eventually find their way to a good treatment for ME. This is without doubt a serious physical illness, says Thürmer.

    Superior estimates that Telemark each year somewhere between 170 to 240 new ME patients.

    Notodden project on schedule
    [​IMG]
    Overlege Hanne Thürmer.

    Photo: Ragnar Lurås / NRK
    Notodden has responsibility for 32 patients. The first dose of medication was given before Christmas last year and the plan is that they will get the same medicine six times over 12 months.

    Half receive intravenously administered active medicine, while the remaining are ineffective placebo medicine. In order to exclude the so-called placebo effect, knows neither healthcare professionals or patients who have active medical and who gets fed "cheating medicine".

    - Now have all received medication four times and the end of May should all have received medication six times, says project secretary Ann Elin Lonar.

    The nurse makes a lot of practical work in the study. First, in September 2017, researchers can begin to analyze the data and see how it has gone with patients who have had real medicine.

    But earlier in 2018, the research results may provide answers about cancer drug works against ME / CFS, and whether any subset of ME / CFS with different wattages.

    Have archive of 250-ME patients
    Thürmer and her colleagues built a few years back up a study offerings and a learning and activity offerings by Notodden hospital. It meant that they finally sat with a list of 250-ME patients who were positive to join in a future study.

    It led to the offer to join the big Norwegian ME study which is now being followed with interest also at US hospitals.

    Thürmer does not believe that the disease can be amortized with psychological problems.

    - I think this is a physical illness, but we do not have tests or effective treatment currently. Therefore, I think we need more research and more knowledge to help these patients. Precisely what makes such research extremely meaningful to attend, says Hanne Thürmer.
     

See more popular forum discussions.

Share This Page