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Nitric oxide and its possible implication in ME/CFS (Part 2 of 2)
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How to join and start a Rituximab trial

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by redo, Oct 22, 2011.

  1. redo

    redo Senior Member

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    The authors behind Rituximab studies (Mella/Fluge) very much wants others to also do trials (and publish the results). And if you want to do be receiving Rituximab yourself, here's how one could go about doing it (please come with other suggestions if you have any!).

    Contact your ME doctor, and ask if he/she would be interested in running a trial of 5 patients on Rituximab. The doctor could use the exact same symptom schemes as Mella/Fluge used. Next step is ethics approval for the trial, and funding. The ME doctor would be doing the ethics approval paperwork, and than you've got to think of some way to get funding. Personally, I think living with ME is torture, so I don't think funding (at least some of the cost) oneself would be something to rule out. Yes, it's expensive, but living with this disease is impossible, so... Other places to check for funding would be NGOs, government grants, etc.

    Point is, if we want something to happen, we've got to make something happen. If you have suggestions for doctors who could be thinkable to do it, ways to get funding or other things, than please post.
  2. Andrew

    Andrew Senior Member

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    Interesting idea. I have routine appointments with an oncologist. I'm going to ask him if he is interested, or if he knows someone who is. Also, I'm trying to get an appointment with Dr. Chia, and maybe he would be interested. What worries me about him, though, is he said he treatment risks an auto-immune response. It is beyond my thinking to understand how this ties in.
  3. redo

    redo Senior Member

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    About the autoimmiune potential of the drug itself. The fact that it's been used in hundred of multiple sclerosis patients calms me about unforeseen events. Add to that that even more RA patients have used it. Both of those conditions have many similarities with CFS...
  4. redo

    redo Senior Member

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    By the way, great that you're thinking about taking an initiative Andrew!
  5. SpecialK82

    SpecialK82 Senior Member

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    How about appealing to the manufacturer, Genentech? They have the profit motive.
  6. Sing

    Sing Senior Member

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    How about a group letter to be sent out to every doctor and researcher, every organization, we think might take it on? We could say we are willing to be part of the trial and can offer partial financial support towards the cost of the study. I'm sure we could come up with an intelligent letter and lists of recipients to send it to.
  7. Andrew

    Andrew Senior Member

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  8. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    That looks like a scary drug.
  9. Nielk

    Nielk

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    Sallysblooms,

    Our condition is scary. Some of us are severely affected with practically no life. A scary drug that has potential to work is better than no drug at all.
  10. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    I guess I just read some really awful stuff. Toxic meds can make things worse. More attention should be paid to supplements. But I am very careful of toxins with POTS since the nerves are involved.
  11. Andrew

    Andrew Senior Member

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    I posted somewhere else about warnings regarding taking this. It involved death within 24 hours. I can't remember where I posted it now. But I found it by reading about Rituximab at the NCI website.

    Anyway, here's another one: http://www.medicalnewstoday.com/releases/150657.php
  12. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    Yes, I have read about that, so awful!
  13. Nielk

    Nielk

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    I didn't read this. It is awful and very scary! I agree.
  14. Jenny

    Jenny Senior Member

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    A huge amount of attention has been paid to supplements in the treatment of ME. The supp manufacturers have been making a fortune out of us. I must have tried hundreds over a period of 30 years, and have no clear evidence that any of them have done me any good at all.

    Jenny
  15. jace

    jace Off the fence

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    The Norwegian researchers addressed the problem of progressive multifocal leukoencephalitis (PML), they stated that it had only occurred on multiple drug treatment, and never on a monotherapy. Can't find the ref for this

    In any case I think I'd chance a 500/1 fatal outcome and have a 60/40 shot at health than remain as I am. There's so much work that needs doing out there, and at present I am only able to look after myself (badly).
  16. redo

    redo Senior Member

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    Yes! Good idea. Contact a ME doctor, contact the manufacturer, and see what you can make happen. I think they'll say yes. What remains is just to do it. The case study can be almost as simple as just dispensing the drug in a normal treatment setting, the only other thing the doctor have to worry about is giving you the symptom schemes, and writing about it once it's done... Easy as ABC.
  17. redo

    redo Senior Member

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    Yes, we should. And when this gets published it'll weigh even more than if it was sponsored by someone with self interest. I think we should do it, and we should do it now.
  18. redo

    redo Senior Member

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    Yes. Please do that. We need all good forces working together now, and the foundation could be one. I say go for it.
  19. redo

    redo Senior Member

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    The most important safety risk is PML, and the chances are better than 999 of 1000 that it'll not happen. I've read that it hasn't happened in monotherapy the first year. More about safety concerns is written in this thread: http://forums.phoenixrising.me/showthread.php?2621-Rituximab-a-Possible-XMRV-Treatment so let's discuss that there, so we could keep this thread on topic :)
  20. crmfghtr

    crmfghtr

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    Anything is better then this sickness. This is the first thing I have seen that absolutely makes sense to me. The only thing is how many years do we have to wait before its something they will freely give us? I honestly think I will be dead before something actually gets done. By the time clinical trials are done, approval, and our doctors are willing to do it, how many more years do we have to wait? I have been waiting 15 bloody years, I lost a prominent career after 20 years of hard work. I can never go back now its too late for me. How many young people will lose careers and marriages etc because the process will just take so long. Im feeling very bitter today sorry despite this good news lol

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