BIG NEWS: CFS remissions on Rituximab

Discussion in 'Fibromyalgia Main Forum' started by ProHealth, Oct 21, 2011.

  1. ProHealth

    ProHealth Member

    BIG NEWS: CFS remissions on Rituximab suggest autoimmune aspect - for subset at least
    October 20, 2011

    Following is an explanatory news release from PLoS ONE - the journal that published these intriguing research findings on Oct 19; plus a link to the full text article, a summary abstract of the key findings and the description of the trial.

    PLoS ONE News Release:

    Chronic fatigue syndrome (CFS) may be alleviated by the anti-cancer drug Rituximab, suggesting that the source of the disease could lie in the immune system, according to a new study published Oct. 19… Uncertainty about the cause of CFS, which is characterized by extreme, unexplained exhaustion, among other symptoms, has led to much debate, but the authors of this recent study believe they may have found the answer.

    Continue Reading:
  2. LadyCarol

    LadyCarol Member

    Please note - Rituximab destroys both abnormal (malignant) and normal B-cells.

    Rituximab is used to treat several types of non-Hodgkin lymphoma, as well Chronic Lymphocytic Leukaemia (CLL) - (Rituximab is often used in combination with chemotherapy).[This Message was Edited on 10/22/2011]
  3. simpsons

    simpsons Member

    it does open the door for other drugs in this area and show that m.e. is as we all thought prob autoimmune illness

    this is a big development for m.e. as now it can be considered as autoimmune not all in the mind

    this should prompt further research in this area, so this is big big news

    other drugs that target this area would be interesting to hear about

  4. LadyCarol

    LadyCarol Member

    For some it is indeed an autoimmune disorder, for others the exact root of their illness may be attributed to something else.

    It has also been found that some patients who are diagnosed with CFS/ME then go on to get Chronic Lymphocytic Leukaemia (CLL). More research is required to see if using Rituximab for suitable CFS/ME patients will not only help them but also reduce the ever increasing number of people being diagnosed with CLL who previously had been diagnosed with CFS/ME.
  5. mbofov

    mbofov Active Member

    First, it is good news having evidence that many (most?) cases of CFS may be an autoimmune disorder.

    However, given mainstream medicine's predilection for often very dangerous drugs over more benign or natural type of healing is where I get scared. See the film Burzynski, about Dr. Burzynski's treatment of cancer using antineoplastins, which do not kill or injure his patients, and has caured many, and which has been fought tooth and nail by the medical establishment, which prefers to burn with radiation and use extremely toxic drugs (which cause severe damage) before allowing any other treatment. This is very scary to me, if someone should get the bright idea of requiring CFS patients to be treated with Rituximab, which can be very dangerous.

    I would much prefer research devoted to finding out the CAUSE of autoimmunity, and dealing with that.

    Here's the black box warning on Rituximab:



    Infusion Reactions

    Rituxan (rituximab) administration can result in serious, including fatal infusion reactions. Deaths within 24 hours of Rituxan (rituximab) infusion have occurred. Approximately 80% of fatal infusion reactions occurred in association with the first infusion. Carefully monitor patients during infusions. Discontinue Rituxan (rituximab) infusion and provide medical treatment for Grade 3 or 4 infusion reactions [see WARNINGS AND PRECAUTIONS, ADVERSE REACTIONS].

    Tumor Lysis Syndrome (TLS)

    Acute renal failure requiring dialysis with instances of fatal outcome can occur in the setting of TLS following treatment of non-Hodgkin's lymphoma (NHL) with Rituxan monotherapy [see WARNINGS AND PRECAUTIONS, ADVERSE REACTIONS].

    Severe Mucocutaneous Reactions

    Severe, including fatal, mucocutaneous reactions can occur in patients receiving Rituxan [see WARNINGS AND PRECAUTIONS, ADVERSE REACTIONS].

    Progressive Multifocal Leukoencephalopathy (PML)

    JC virus infection resulting in PML and death can occur in patients receiving Rituxan [see WARNINGS AND PRECAUTIONS, ADVERSE REACTIONS].

  6. TigerLilea

    TigerLilea Active Member

    Mary, I'm more than a little nervous about this. I think it is far too risky and I would never consider trying a chemotherapy drug to possibly cure CFS. Even with cancer, I think chemo should be a last resort whenever possible.
  7. LadyCarol

    LadyCarol Member

    PLos ONE - research article :
  8. richvank

    richvank New Member

    Hi, all.

    I want to express my view that the fact that some patients recovered from ME/CFS after treatment with Rituximab does not necessarily mean that ME/CFS is an autoimmune disorder.

    In addition, while small elevations in autoantibodies have been observed and reported in ME/CFS patients in the past, this also does not necessarily mean that ME/CFS is an autoimmune disorder.

    In my view, in this study the role of Rituximab, which knocks out the B lymphocytes, was to lower the inflammation that is promoted by these lymphocytes in ME/CFS, because of the shift to Th2 in this disorder and the usual low level of cortisol, which normally suppresses inflammation. Lowered inflammation means lowered oxidative stress, which is a component of inflammation. Lowered oxidative stress means lowered demand on glutathione. I suspect that the glutathione levels were able to recover enough in some patients to break the vicious circle mechanism involving vitamin B12 functional deficiency, a partial block in the methylation cycle, and draining of folates from the cells, and the immune system was able to shift back to a normal balance between Th1 and Th2 because of the improved glutathione status. Then, when the B cells came back, inflammation was under better control.

    In those who did not experience longterm recovery, apparently the inflammation continued to be severe enough to re-establish the glutathione depletion and the vicious circle.

    In those who did not experience even temporary benefit from treatment with Rituximab, I suspect that other factors were continuing to hold down the glutathione, so that even though the inflammation was suppressed, glutathione continued to stay too low to break the vicious circle. Toxins would be major suspects in these cases, I think.

    Best regards,

  9. mbofov

    mbofov Active Member

    It would be nice to see research on this, but I doubt if there will be money for that (tho' scads of money for investigating extremely toxic drugs).

    It seems to me that toxins blocking the production of glutatione is a vicious cycle which may be very difficult to break - because glutathione is needed to detox properly from what I understand, but glutathione levels can't be raised because of the toxins. I've been taking a homeopathic remedy for mercury for 8 days now and it has been on the rough side. I don't know yet if it will do any good, but I'm definitely reacting to it (and for those who don't "believe" homeopathics can do anything, I would wager you've never tried one).

    I'm putting off spending $3,000 (which I don't have) in having 3 crowns replaced before I could safely attempt Andrew Cutler's mercuy protocol (you have to have all amalgam out of your mouth before trying his protocol, and there may be mercury under crowns, but it won't be seen on x-rays (I already had all amalgam fillings removed 12 years ago or so)).

    So thought I would try a homeopathic remedy first, it's cheap, just to see how I react. And I reacted but I think the worst is over. but now I'm sick, so have to get over that....

    c'est la vie with CFS -


  10. SPR30

    SPR30 New Member

    As somone who has tried this infusion, I strongly recommend researching the drug very carefully. This is a hard core drug that takes hours to infuse (at least for me, but I did not use it for CFS). It also stays in your system for months, so if you react badly or have side effects it could be a while before it subsides. When you get into chemotherapy drugs it is risky and they hit your body and immune system hard. Most of these drugs have awful, dangerous side effects and you have to weigh the benifits with the risks. Sometimes a treatment can be more devastating than the disease. I know it's exciting to hear of new therapies, but this drug is not an established, long used treatment for CFS or even some of it's other uses.

    This is my opinion, based on my experience. Thank you for considering it.
  11. wacquiebob

    wacquiebob New Member

    What kind of reactions did you have?
  12. simpsons

    simpsons Member

    whilst i have to agree that this is a strong action for anyone to ake

    we must remember there are people out there who are not even well enough to use a computer, who live in complete isolation from the world unable to speak move or eat.

    for those people ME is a living death

    at least it shows that there is a tretment out there that can help

    there is no other drug out there that has had these results

    norway health minister has said sorry for the way they have treated ME patients, because of this treatment many pwme in norway will now get help and medical treatment. so it really is big news

    marshall p lightening process cbt and get may help those with depression caused chronic fatigue but are by no means a treatment for ME, especially those with severe ME.

    mary i hope that this maylead to research for a cause of ME

    it certainly puts the stoppers on the its all in the mind crew

  13. wacquiebob

    wacquiebob New Member

    There is a You-Tube video of Dr. Bell and the norway researchers discussing the cases of two patients. The video is in their language but there is some English. Even in another language though the improvement in the two patients is evident from the pictures and is amazing. Dr. Bell's response is also note-worthy. He appears to very impressed, which is impressive because he knows what ME patients are like. The video really gives me hope. If I could get 6 months of feeling like what that young girl looks like a would take it in a heartbeat. I need the mental reprive to survive another 13 years with this disease.


    This Message was Edited on 01/07/2012]
    [This Message was Edited on 01/07/2012]
    [This Message was Edited on 01/07/2012]
  14. simpsons

    simpsons Member

    i should imagine that for those who commit suicide this would something that they would try in a heartbeat too

    sadly the state of treatment and care for pwme is so poor and the abuse and stigma from friends family dr's society and illness burdn
  15. Mikie

    Mikie Moderator

    Is following my updates on my peptide injections. It's been successfully used in Europe for more than 30 years and the success rate for people with our illnesses is more than 90 percent. It has also been very effective in treating cancers.

    I'm not ready to claim success yet as I've only had two injections. As with all patients, progress in the beginning can be sporadic and this has been my experience. Still, my painful arthritis has been gone from the first day of shot one. My dry mouth and dry eyes from my Sjogren's has been gone except for a one-day flare and a couple of days when we had a Red Tide outbreak here. My sleep is much improved as is my energy but it took a while for the energy to improve.

    There was a lot of Herx-like purging in the beginning and a lot of FMS pain like my old Guai flares. I think these were related to my body's getting rid of pathogens and FMS debris. It's like it had to get worse before it got better.

    So, I'll keep y'all updated as I go along because if this works as well for me as it has for so many others, it may be the treatment we've all been seeking. Even with such a high success rate, though, like everything else, it doesn't work for 100 percent of those who try it.

    Love, Mikie
  16. simpsons

    simpsons Member

    please do keep us updated always good to hear how different treatments go

    back to the origional post i wondered if anyone had done or thought of any natural products that do the same thing or act in the same way. herbal etc
  17. Mikie

    Mikie Moderator

    Take anything away from this treatment as it may turn out to be the answer; I hope so.

    It is still too early to know just how much my treatment is helping but what attracted me to it is that there have been almost no side effects from it. I call that my "Chicken Soup Test." If it might help and won't hurt, why not!

    I'm keeping an ongoing thread on my injections.

    Love, Mikie