Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
Determined to paper the Internet with articles about ME, Jody Smith brings some additional focus to Severe Myalgic Encephalomyelitis Day of Understanding and Remembrance on Aug. 8, 2017 ...
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Discussion in 'Rituximab: News and Research' started by ruben, Oct 30, 2011.

  1. ruben


    hi there, don't post much on here, but was just wondering. I'm in england and have had ME/CFS since the 1970s. If I was contemplating taking part in a future drug trial to assess the effectiveness of this drug just how does one go about it. look forward to suggestions. Robin
  2. redo

    redo Senior Member

    I think it'd be easier to get an elephant through a keyhole, than getting accepted into a trial just like that. I guess there's at least some hundred thousand ME patients who'd want to get into trials, and there's not a lot of open spots when a trial takes place. If you don't want to wait for years and years, you've got to make things happen. Take initiative for a tiny group as a case study, or get the drug on another indication (such as rheumatiod arthritis, if you've got those symptoms as well). I've started a thread about this in the immune modulators subforum. You're more than welcome to contribute to the brainstorming of ideas as to how one could get started on the drug.
  3. ukxmrv

    ukxmrv Senior Member

    The ME association has said that they would welcome applications for a trial. They have the Ramsay fundation with some money that could be out into this. Listen out for any rumours or news from that area.

    Any clinical trial in the UK would be swamped with requests to join as we have so little medical research into ME.

    The best thing we patient can do now is to find someone to actually carry out a trial. Join your local ME group and look for a doctor close to you who would be willing to carry one out, get them to do an application and then apply to the ME Association for funding for that trial.
  4. snowathlete


    really difficult as other posters have said. But, someone has to be in the trial. So, its hard but not impossible.

    the trick will be to get as much information as you can about potential trials, and/or to help get one started. make contacts if you can. I would guess that there might be an element of 'who you know' involved.

    I wish you good luck though. I am personally not trying to get on a trial, because i know there are others who have waited longer than me and/or have the illness even worse that me. If you have had this since the 70s (before i was even born) then i would go for it - make it happen!
  5. Rita

    Rita Senior Member

    In Spain, Europe, a Dr Ferrn Garcia Fructuoso is going to do the second trail with Rituximab with CFS/ME patients of viral origin
    .The first was with 60% success.Five patients, three with good reponse.
    Don't know the number of patients in the second trial., but all are from Andorra, a little country near Spain in which the government afford the Rituximab for ME patients without problems.
  6. shannah

    shannah Senior Member

    Dr. Enlander just posted some encouraging news on his FB page.

    "Dr David Bell and I will attempt to replicate the Rituximab study. David is enthusiastic in doing this as he retired from active practice and will come to New York to work with us in the new ME/CFS center."

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