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Retuximabi Now??

Discussion in 'Rituximab: News and Research' started by fusroy, Feb 20, 2012.

  1. fusroy

    fusroy

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    Rituximab Treatment for ME/CFS in U.S.??

    This should have deleted, but for some reason this blog server doesn't allow one to do a delete, only an edit. So here it still is.

    As to Rituximab in the U.S., I now know of a few sources and am seeking to learn more. I will post the Dr.s I KNOW are already using the drug for treating ME/CFS as soon as I am certain they are really doing so, at least not just for a couple of patients, but as a general practice. For those seeking more on Dr. Enlander's Ottawa presentation on Rituximab in ME/CFS there is also a DVD you can purchase on eBay -- of all places. Search under "Sinai CFS DVD" and it will come up as a "buy it now" item for $20 plus $3 shipping. I just ordered mine and it isn't here yet. He3nce I cannot yet tell you whether it is worth buying.
     
  2. SOC

    SOC Senior Member

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    Just a reminder:
    Everyone should be cautious about what they post on this very public board. That includes not only private information, but treatments, especially experimental or off-label treatments. Think about the possible consequences not only to yourself but to fellow patients, doctors, and researchers trying to help us.
     
  3. Daffodil

    Daffodil Senior Member

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    i cant say 100%, but i would be very surprised if someone was getting rituximab here in canada for CFS.... i think dr. kogelnik in california might be doing a rituximab trial..

    LOL don't put all your information online like that!!
     
  4. fusroy

    fusroy

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    Soc,
    Could you please delete the quote from my earlier email from your comment to it. It probably is a good idea not to leave so much personal information out there. I've deleted the specifics from my original, but now they are already reproduced in your response. So please, if possible delete my original quote. I can't do so from my machine.
    Thanks, Bill F.
     
  5. SOC

    SOC Senior Member

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    Will do so immediately. :D
     
  6. fusroy

    fusroy

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    Here is what my original post should have said: I have just one question. I have heard from several sources that at least two, and perhaps three or four, Physicians are already treating ME/CFS with Retuximab in the U.S.A. or Canada As someone who has had truly debilitating ME/CFS pain fatique and all of the other common symptoms for 22 hellish years now, and who just this week has finally received SSDI for the condition from the U.S. Government as well as insurance assistance from my university, I am of course dying to see whether the spectacular results obtained by the Norwegians and others are already being duplicated by any U.S. or Canandian researchers as well.


    So if you know of any programs here in the U.S or in Canada already up and running, or soon to be doing so, please contact me, Bill F., as soon as you possibly can!!!!
     
  7. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi fusroy,

    I didn't see your earlier post, but I'd still suggest that you delete your email address and phone number and instead ask people to contact you by Private Message--which is much safer.

    Very few of us would be willing to put our email and telephone number on a forum that is searchable by google.

    I hope you find the help you need.
    Sushi
     
  8. Snow Leopard

    Snow Leopard Senior Member

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    Indeed, I got spam as soon as my university email address was posted on the web...

    PS, it is Rituximab. (and the 'mab' stands for monoclonal antibody)

    http://en.wikipedia.org/wiki/Rituximab
     
  9. Fred1234567

    Fred1234567

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    I would be very surprised if there are not Dr's prescribing rituximab it is just finding them easier said than done but don't give up it seems oncologists are the way to go!!!!
     
  10. fusroy

    fusroy

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    I wrote for an hour and then lost the message when I tried to post it!
     

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