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Astounding Norwegian research breakthrough with Rituximab can solve CFS mystery!!!

Discussion in 'Rituximab: News and Research' started by urbantravels, Oct 19, 2011.

  1. Andrew

    Andrew Senior Member

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    I was reading a page at NCI about rituximab, and it linked to another site that offered this warning:


    from: http://www.nlm.nih.gov/medlineplus/druginfo/meds/a607038.html
  2. Snow Leopard

    Snow Leopard Senior Member

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  3. Enid

    Enid Senior Member

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    Thanks Snow Leopard and all you Scientists. An uncanny link in my family here. I went down with full blown ME - my brother (a Doc in the States) has been diagnosed PML when taking no drugs whatsoever. Whilst I improve unfortunately he does not. (Old Dad died of Prostrate Cancer - so something much interlinked I feel going on).
  4. alex3619

    alex3619 Senior Member

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    Hi Andrew, the Rituximab paper notes that the PML side-effect has never happened to someone only on Rituximab. Typically cancer patients are on a whole lot of different drugs, we can't use cancer side effect lists with any certainty. RA side effect lists might be more useful if we can get hold of RA specific lists. Bye, Alex
  5. snowathlete

    snowathlete

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    I for one, had Mono/Glandular Fever when i was a young teen, and it absolutely floored me!
    I had about 9 months off school in the end, and almost had to retake a year. In the end i worked hard to catch up, then about 4 months later i had a relapse and had Mono again - at least that is what it felt like, and what the doctor said (but my medical records dont show a second blood test). I recovered after about 3 months the second time, but never felt 100% right again.
    I got ME/CFS about 13 years later.

    So I have always been sure that there is a link. At least in my case.

    Astonishing that the Norwegian gov't issued that appology. We absolutely should push our own governments for the same!

    Nobel Peace Price for these Norwegian doctors one day i hope!
  6. LaurieM

    LaurieM

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  7. urbantravels

    urbantravels disjecta membra

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    This is worth repeating - I have it on excellent independent authority that there are a number of other monoclonal antibody agents coming down the pike. Ritixumab was simply one of the first to come along, so it has had more time to be studied in other conditions besides B cell lymphomas. Because it is an early generation drug, it also has some significant issues that come with it (potential severity of side effects) - but as the research expands the applications for this type of drug and helps guide development of new ones, that problem could well decrease.

    If you remember news from a few months ago that a new drug, called Benlysta, has been FDA-approved for lupus treatment - Benlysta is in the same class of drugs, monoclonal antibody drugs. Unfortunately, it's not hugely effective - but it's the first new drug approved for the treatment of lupus in 56 years - which is pretty significant. Benlysta is the trade name in the US, the generic name is just adorable - Belimumbab.
  8. snowathlete

    snowathlete

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    Please check out my post in the other forum about a new petition I have setup on the UK government's website:
    http://forums.phoenixrising.me/showthread.php?14362

    We need 100,000 signatures to get this debated in parliment. You need to be a UK citizen, or Ex-Pat in order to sign it. If you are not, then just hound those you know from the UK until they sign it ;)

    Thanks
    Joel
    Mog likes this.
  9. Boule de feu

    Boule de feu Senior Member

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    Kati likes this.
  10. wdb

    wdb Admin

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  11. Sasha

    Sasha Fine, thank you

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    I just started a thread for international media coverage of the story if you fancy adding any of those in - I find it hard to tell which ones are well known (I was assuming ABC is the big US TV channel). We've had one on the go for UK stuff since this morning. All good stuff!
  12. Tristen

    Tristen Senior Member

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    Never thought of that. I've believed it to be just low blood volume. I do have a dramatic effect from 2 liters NS IV. But that was several years back. Not sure how it would affect me now.

    My doc is currently chasing down an autoimmune component to my me/cfs.
  13. Enid

    Enid Senior Member

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    Very encouraging indeed - thanks for your post 256 wdb !
  14. Andrew

    Andrew Senior Member

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    I see the reason for the autoimmune explanation now.

    But wouldn't remission from B cell depletion also fit:

    1. the theory about your immune systems begin revved up in TH2 mode. But depleting the B cells you reduce the cytokines etc. that cause our symptoms

    2. there is a viral infection in B cells
    jace and ixchelkali like this.
  15. snowathlete

    snowathlete

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    and this happening mainly in the tonsils is very interesting.

    I had tonsilitus over and over again when i was young. The docs wanted to have them out, but my parents didnt let them.
    Anyway, before i got ME/CFS i had a recurring (pretty much continual) infection in my tonsils, for about a year. Maybe a little longer. They would swell and i would get tonsil stones - which are basically an accumulation of white blood cells, sulfur and whatever the infection is. I went to the doctors and he said to come back and they would take a sample, but i was just too done in and had alot going on, like moving house, new role at work, getting baptised, getting married - all in the same year. So i didnt ever do it.
    When i got ME/CFS they vanished and i dont get them anymore at all.

    Looking back on it, i bet this was EBV.
  16. fla

    fla Senior Member

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    Those who are recently jumping on the autoimmunity and rituximab regarding ME/CFS bandwagon may now be interested in this paper discussing exactly this from a couple years ago. The National CFIDS Foundation is the most scientific & least political oriented group I have seen.
  17. Esther12

    Esther12 Senior Member

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    That there are relatively common reports of dramatic improvements in CFS during pregnancy - that could indicate an auto-immune cause too (for some, anyway).
  18. Levi

    Levi Senior Member

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    Me too, what a coincidence. Hospitalized with severe Mono for a week junior year HS, resulted in 9 months off school except home tutoring, weird relapse 4 months later with measles activation and spots all over my body. Then smooth sailing until about 14 years later. But EBV was looked at and ruled out as linked to ME/CFS by the CDC. They have the finest minds in science and would never make a mistake about something like that.
  19. Andrew

    Andrew Senior Member

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    Here's a quote from the paper:

    They said this in 2009.

    Edit. I emailed Fluge about this, and I emailed Hokama about his prediction coming true. Maybe they can help each other.
    jace likes this.
  20. Levi

    Levi Senior Member

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    Well,

    It would certainly be interesting to see a follow-up study using an ME/CFS patient subset that blood tests as having significantly elevated for ACAs of immunoglobulin M isotypes. A correlation tying patient improvements with Rituxumab treatment strongly to that subset would generate lots of interest. Of course, it would all need to be double-blinded. I don't really know how you would do that tho since most patients already know if they have ACL antibodies. Right?

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