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New Rituximab ME/CFS open-label phase II study with rituximab maintenance treatment

Discussion in 'Latest ME/CFS Research' started by Simon, Jul 1, 2015.

  1. TiredSam

    TiredSam The wise nematode hibernates

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    Quite right. I was being silly.
     
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  2. bctjr1993

    bctjr1993

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    Well, for some people, Rituximab is an available form of treatment (as expensive as it may be), so the logic of making the most of the treatments available to us, which you used in your post, means that people who currently have access to Rituximab and who have already tried the less expensive forms of treatment, to no avail, should go ahead and get that Rituximab, since the evidence on its efficacy (although not taken from a massive sample size) is far more convincing than the evidence of the efficacy of any other form of CFS treatment. Would that be correct for me to assume? I am just trying to figure out if I understand you correctly. If so, that is exactly the opinion that I hold. I think that anyone who has access to Rituximab and has tried the cheaper, more common forms of CFS treatment without experiencing any significant positive response should definitely use all the tools at their disposal and get Rituximab!
     
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  3. perrier

    perrier Senior Member

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    The three important issues with regards to aids were that a) on the whole MEN seemed to be the primary victims of AIDS b) it was a deadly disease and c) it was possible to transmit it. I will never forget Nureyev being brought on stage on crutches in the final stages of his illness. Then there was Rock Hudson, Anthony Perkins, Liberace.

    With ME the preponderant victims are Females, or so it seems. Lumped as it has often been with fibromyalgia, it has been seen as a woman's illness, you know, fatigue and aches and pains. This has IMHO made it less important an illness for the powers that be. And then there are points b and c,

    Yet, polio was not really deadly but crippling and the forces of medicine got together on that one.

    I'm not sure how best to comparethis illness but I would say it's like having MS and Crohn's at the same time.

    At least that's how it seems for my daughter.

    There has to be some dramatic way of presenting this monster of an illness.
     
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  4. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    That is our challenge.
     
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  5. BurnA

    BurnA Senior Member

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    It's a personal choice apart from it's expensive and not readily available.
    It comes down to risk, it looks like it might be more effective than any other drug for ME but until phase 3 results are out we don't know for certain. So do you want to jump the gun or wait and see. That's the question. There are patients doing exactly what you describe but there are so few places offering rtx the overall numbers are still low and nobody has any clear data from these places.
     
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  6. SOC

    SOC Senior Member

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    I can't say I'm up on the details of Ritux treatment since I'm not likely to get it given the state of my immune system. I'm certainly not opposed to people who can get it taking it. That doesn't mean it's going to be available to most of the ME population until the research is established. I don't think it's too dangerous for PWME or anything silly like that. If it's not too dangerous for RA, it's not too dangerous for ME. I am a realist about availability, though. Most doctors are not going to prescribe it, and insurance companies (or socialized medicine systems) are not going to pay for it without more evidence of efficacy for ME than we currently have.

    Just to clarify a point -- there is almost no evidence for any treatment for ME. Patients who get treatments like antivirals, antibiotics, or OI treatments don't get them for ME. They get them for documented viral or bacterial infections, and documented OI, not for ME. Similarly, patients who have conditions other than ME for which Ritux is a treatment may get Ritux for that. If it helps with ME symptoms as well, that's a plus. Getting any treatment specifically for ME is going to be very difficult until there is some established research that the medication treats ME symptoms specifically. We don't have that... yet.
     
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  7. perrier

    perrier Senior Member

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    Good morning folks: I'm sure this has been covered somewhere, but I'd be grateful for an answer.

    1) who in the USA is using Rituximab for ME besides Kogelnik.
    2) why has the USA not initiated a study of their own
    3) where in the world is there some research on this: Norway, Berlin at Charite, UK ( I have no info on their study. Does anyone have news?) Dr Kogelnik has some info from using the drug. But where else is work being done.

    Thanks
     
  8. Jenny

    Jenny Senior Member

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    I've had a several different anti-virals and abx for ME without any documented infections - just on an experimental basis.
     
  9. SOC

    SOC Senior Member

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    Interesting. :) Were they paid for by insurance or a socialized medicine system, or did you pay out of pocket for them?

    If you got them through the NHS, I'm sure your fellow UK PR members would be interested to hear how you achieved that. It's not easy to get any system to pay for treatments that are not considered established for the condition, especially where ME is concerned. If you've figured out a way, there are probably thousands of people want to know what it is.
     
  10. Jenny

    Jenny Senior Member

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    I got them in the UK mainly on the NHS. (A great 'socialised' system.) I've posted about my treatment several times.
     
  11. SOC

    SOC Senior Member

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    Great work! I'm sure many other people wish they could achieve what you have. :thumbsup: Sorry I mentally misplaced your previous posts about your treatment. It's good to be reminded that the information is here at PR for other members to find.
     
  12. Jenny

    Jenny Senior Member

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    Of course, none of it helped.
     
  13. msf

    msf Senior Member

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    Which NHS is that? Is it the same one that offered me no help at all?
     
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  14. msf

    msf Senior Member

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    What were you prescribed, out of interest?
     
  15. Jenny

    Jenny Senior Member

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    Over the last 30 years I have been lucky enough to have doctors who were willing to talk about possible treatments and read research papers I gave them.

    I had many different abx, eg doxycycline, minocycline, amoxicillin, tinadazole (sp?), also long-term valtrex. And many other meds.

    I've made several posts about this.
     
  16. msf

    msf Senior Member

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    I´m sorry that they didn´t work, but it just shows what a lottery the NHS is - I have found reports of the NHS treating people with Chronic Yersinosis (my diagnosis), but when I asked my GP about this possibility he said he wouldn´t even know who to refer me too, and it ended there.
     
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  17. Jenny

    Jenny Senior Member

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    I don't blame the NHS, the fact is that there are no effective treatments for ME available even under private health care.
     
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  18. msf

    msf Senior Member

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    I do, there are effective treatments for Chronic Yersinosis.
     
  19. SOC

    SOC Senior Member

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    Those of us who have achieved substantial improvement under the care of specialists who understand the disease would beg to differ with you. There are some effective treatments. The problem is there's likely to be multiple conditions under the current label ME/CFS, so the specialists need to investigate each case and find the treatments that can improve the health of each individual patient. There's not a one-size-fits-all treatment.

    So I agree there's no single treatment that will improve the QOL of every patient and there's no cure. That doesn't mean, imo, that there's no effective treatments at all for the conditions labelled ME or CFS.

    This is an important point to me because I think patients need to understand that the situation is not hopeless.
     
  20. Jenny

    Jenny Senior Member

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    Hmmm...I'd like to know what they are (for CC definition ME). And how to disentangle the effects of treatment from natural fluctuations of the illness. But this is getting this thread off topic.
     

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