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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. justy

    justy Senior Member

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    Thank you so much Rich for taking the time to explain the situation as you see it so clearly. Like you i hope that the MCBH is looked into in more detail. I remember Dr Mikovits saying something about methylation treatment in one of her talks as being useful so it seems that some researchers are taking it seriously.

    My first thought after seeing the rituximab talk was " how can i get to Norway for a trial" but my second thought was "hmm, risk death and deplete an important aspect of my immune system" not for me for now but i am very encouraged by the talk that they are now doing a further larger trial (was due to start Oct 2011) and they are working very hard to see what else is going on and to work out why the rituximab is helping.
    It will be interesting to see if this study gets as much attention in the Lancet as the death threats story.
    All the best, Justy.

     
  2. fla

    fla Senior Member

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    Richvank, according to your theory can you perform a thought experiment of giving Rituximab to autism patients?
     
  3. kurt

    kurt Senior Member

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    What has happened: Thanks to the Norwegian study we know that reducing the humoral immune response (lowering B cell activity) reduced ME/CFS symptoms in 2/3 of patients in one study.

    Why does this drug help? There have already been at least four theories proposed here: 1) This shows ME/CFS is an autoimmune disorder, or a disease with autoimmune elements, 2) This study supports the idea that B-cells are involved in ME/CFS (such as an HGRV, or perhaps some unknown pathogen that causes over-expression of the B-cells), 3) the experiment lifted oxidative stress from the over-active humoral immune response present in ME/CFS and thus raised glutathione levels, which has been correlated with ME/CFS symptom improvement, and 4) by reducing B cell activity, the activity of EBV or CMV might have been reduced, as they can inhabit B cells.

    There might be other explanations, there is some disagreement over the mechanism of Rituximab in cancer, so this is just a starting point for further research. But what a great study!
     
    justinreilly and taniaaust1 like this.
  4. Dreambirdie

    Dreambirdie work in progress

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    Hi Justy--

    Your second thought was my first thought. I am glad to see the progress, but I know I would NOT be able to tolerate a drug like this. When I read the adverse effects for Rituximab, it gave me a bit of the creeps.

    Serious adverse events, which can cause death and disability, include:
    Severe infusion reactions
    Cardiac arrest
    Tumor lysis syndrome, causing acute renal failure
    Infections
    Hepatitis B reactivation
    Other viral infections
    Progressive multifocal leukoencephalopathy (PML)
    Immune toxicity, with depletion of B cells in 70% to 80% of lymphoma patients
    Pulmonary toxicity


    I hope they learn WHY the drug is helping and come up with less toxic alternatives. For now, I'm sticking to methylation and TCM.
     
    justy and Lelvina like this.
  5. max

    max *****

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    Hi Kurt

    Many thanks
     
  6. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi Rich,

    Please indulge me in asking what may well be a naive question. First also, excuse me for not quoting you in entirety as I just wanted to address a couple of ideas. The methyaltion theory does seem to fit here.

    In my limited understanding Rituximab is fairly indiscriminate in killing B cells, and, as you point out, in most cases symptoms reappeared when the B cell population regenerated.

    As you know, I and others are taking GcMAF which also seems to kill (or inactivate? excuse my lack of science) B cells, but only those infected with "something." When our B cell population begins to return to normal, we start feeling better, rather than worse. Which maybe points to idea that killing the infected cells and thus the infection, might be a better strategy than just reducing the B cell population and not targeting whatever it is that is messing with the B cells.

    I'd really appreciate your scientific "take" on this idea. It is not coming from a science background, but a "scratching my head" and wondering what is happening here scenario.

    Thanks!
    Sushi
     
  7. fawkes

    fawkes Yesterday's gone.

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    Is it not also hypothesized that EBV may reside in basal or dorsal ganglia cells? Would rituximab reach these? Is it the case that most antivirals discussed in that connection (valganciclovir for one) hit only the blood cells (B cells in particular)? Which, between antivirals or rituximab, would have a better of reaching the ganglia/spinal cord? Anyone know?
     
  8. Kati

    Kati Patient in training

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    Again I have given Rituximab hundreds of times while working as a nurse with cancer patients. I would like to share my experience and dispell some myths on Rituximab. This is in answer to Dreambirdie's post.

    1) Severe infusion reactions: This is why the infusion needs to happen in a hospital, not at home, not in a doctor's office. I have had quite a few infusion reactions in my carreer, 1 which resulted to a transfer to emergency. Out of a few hundreds. The rest of them resulted on giving Benadryl and Steroids to quiet the immune system. Most patients were able to finish the infusion without further reactions. Dr Mella and Fluge mention a trial with severe ME, to do plasma exchange before attempting Rituximab, in order to reduce the risk of these reaction due to increased circulating antibodies.

    2) Cardiac arrest: never seen that in the 8 years of my career in cancer nursing, not even heard of it happening. We were certainly ready to this possibility for any chemo though- with a crash cart on the ward.

    3) Tumor lysis syndrome- If you don't have a tumor- it's not going to happen. This happens with patients with Burkitt's and other types of lymphomas, yet oncologists are very aware of this and treat preventively.

    4) Infections- Yes this is a possibility that patients need to be aware of. When they are b-cell depleted, they need to report to the hospital when they have fevers. It didn't happen with any of the patients on the Mella/Fluge study.

    5) Hep B reactivation - if you don't have Hep B- it's not going to happen. Hep B patients get Lamivudine in prevention during their chemo.

    6) PML- I hear that a new drug is available for RA patients to treat this. Again this is a condition I have never seen in the cancer population.

    7) Pulmonary toxicity- I have never seen it either- Pulmonary toxicity can happen more often with other chemo drugs given with RItuximab, so which one is which?

    Certainly the choice to receive a drug or participate to a trial is yours and yours only. When you sign a consent for trial drug, it is the responsibility for the doctor to explain the risks, and each one of them. It can be scary but it's their job. If the benefits outweigh the risks, then people go for it. Cancer patients bravely agree to get drugs that have never been tested on humans, usually when they have ran out of options and they know that their cancer is not curable. These people have contributed to the advances of science.

    With Rituximab, this is a well known drug, with well known side effects. I have litterally seen people coming back from the dead with Rituximab, and a few months later going back to work.

    I would like a chance at life, and Rituximab, I feel, gives me that chance.
     
  9. Sing

    Sing Senior Member

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    Thank you so much, Kati, for your information from being a cancer nurse and employing Rituximab. It gives me more confidence that, if I get the opportunity, I would try this.
     
  10. Dreambirdie

    Dreambirdie work in progress

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    There is no way I could do that drug. I have horrible drug reactions, and that one would not be an option for me.
     
  11. kurt

    kurt Senior Member

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    This is just too ironic, so I have to mention:

    Seems we just can't get away from mice! Rituximab is a murine-human chimera!
     
  12. Guido den Broeder

    Guido den Broeder *****

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    EBV that hides in in B Cells makes them immortal, thereby increasing the production of antibodies against amyloid beta. That, in turn, causes oxidative stress. This is latent, immature EBV, so destroying these cells could be effective for quite a while.

    The ganglia are more likely to be infected by an enterovirus, I think. But with EBV out of the way, the immune system should be able to deal with an enteroviral infection.

    Of course, there may be other concentrations of EBV, and also ME patients could have another herpes virus instead of or in addition to EBV.
     
  13. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    yeah, they've ignored all the other proof, so why not this?
     
  14. Sing

    Sing Senior Member

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    Hi Kurt,

    What is a murine-human chimera?
     
  15. alex3619

    alex3619 Senior Member

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    Hi Sing, in legend a chimera is a fictional beast made up of parts of other beasts, such as lion goat or serpent. Chimeric DNA is any DNA that is made from several different species. It is genetically engineered. However this term is sometimes used to refer to people who have xenotransplantation - such as pig implants. Bye, Alex
     
  16. Snow Leopard

    Snow Leopard Senior Member

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    There is plenty of discussion in the scientific literature about virus induced autoimmunity.
     
  17. ixchelkali

    ixchelkali Senior Member

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    Color me cautious, too. But then, I'm usually in the "let's wait and see what the science tells us" camp. But I don't think the results are indicative of nothing. The thing is to figure out WHAT they indicate.

    Some of our long-time clinician heroes have said for a long time that it seems like the immune system gets turned on by some insult, like a viral infection, and gets stuck in the "on" position. Who knows? Maybe it's as simple as that, and using a drug that shuts down the immune system (or parts thereof) will take care of it. But personally, I'd like to have a better idea of why the immune system is turned on before I turn it off.

    Somehow, the autoimmune hypothesis doesn't explain enough to me. If it's an autoimmune disease, what causes the post-exertional malaise (or PENE, or whatever you call it)? How do you explain the outbreaks? Why do people with ME/CFS have above normal levels of several viruses, like EBV and HHV6? Why is EBV often a trigger?

    I just think that any valid hypothesis about this disease must explain all the elements of the disease. Too much of the ME/CFS research has been like the blind men and the elephant, with researchers shouting "Eureka!" when they've only got hold of the tail. To me, this study is just one more piece of the puzzle, and adds one more question to be answered: why do patients feel better when you zap their B-cells? But saying that it's an autoimmune disease doesn't work as a unified theory, to my way of thinking. Not yet, at least; not without more explanation and research. But maybe it will intrigue some immunologists enough to spur further research; that would be good.
     
  18. urbantravels

    urbantravels disjecta membra

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    Hey, someone changed the topic title that I created? What on earth for? The new headline isn't something I would ever say; I don't like having words put in my mouth. If the humor of the original wasn't apparent, then geez you guys, lighten up.
     
    justinreilly, Yungas and Jenny like this.
  19. urbantravels

    urbantravels disjecta membra

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    ...and apparently I can't change it back either. That's just not cool.
     
    Yungas likes this.
  20. livingwithcfids

    livingwithcfids

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    Does anyone know how many of the patients on this cancer drug showed significant improvement? So, as you've said the new direction in which they will focus their attention will be on ME/CFIDS as an auto-immune condition with emphasis on white blood cells. I also heard the drug works best on patients who have had CFS less than 5 years. I just wish more countries would get involved.

    The Norwegian doctors stumbled across this drug by accident. Someone who had both M.E and Lymphoma was given this cancer drug, and to the patients surprise, his M.E symptoms disappeared, so now these two doctors get all the credit.
     

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