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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. lartista

    lartista Senior Member

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    Norwegian research breakthrough can solve CFS-mystery HOT OFF THE PRESS!!!

    Fluge_Mella_toppbil_916551i.jpg
    Norwegian research breakthrough can solve CFS-mystery
    http://www.tv2.no/nyheter/innenriks...reakthrough-can-solve-cfsmystery-3615631.html
    Here are my blogs and vlogs:
    http://www.youtube.com/user/yourARTescortFRANKLY?feature=mhee
    http://www.youtube.com/user/kaiserMECFS?feature=mhee
    http://kaisermecfs.blogspot.com/
    http://yourartescort.blogspot.com/


    My friend from Norway just emailed this to me in Italy and I am rushing it to you all before it even hit the press.... let's cross our fingers and little toes...

    Two oncologists in the city of Bergen in Norway have recently discovered a possible treatment for Chronic Fatigue Syndrome. The drug that they administered improved the condition of two out of three of the patients treated. Several patients were healed.

    TV 2 has exclusive access to the research paper that came out in the medical journal PLOS one. Mella and his colleague, attending MD ystein Fluge, have completed a double-blind study on 30 Norwegian CFS-patients.

    The results are sensational. Two out of three of the patients experienced major improvement, while some experienced a full recovery.

    New status to CFS-patients
    I addition to providing hope to millions of CFS-patients concerning treatment, the MDs are giving the patients, as a group, new status.

    The two doctors say the results indicate that CFS is in fact a somatic decease.

    "We think that CFS is an autoimmune decease. The immune system has a central role in this," they say to TV 2 News.

    Attracts international attention
    The discovery has already attracted international attention. However, the news wasnt released to the public until today, after the medical journal finally lifted the embargo.

    Mella and Fluge presented their results as early as in May at a CFS-conference in London. At the conference, reporting restrictions were imposed upon the audience. Following the conference, the doctors have been contacted by several foreign doctors and researchers who attended the London-meeting.

    Cancer-drug against CFS
    The two Norwegians are the first two doctors in the world to have found that the cancer-drug Rituximab has very good effects upon CFS.

    Each year the disease, which has an unknown etiology, ruins the lives of millions of people worldwide. In Norway alone it is estimated that 15.000 people have CFS.

    A fortunate conjuncture
    Professor Mella and attending MD Fluge have basically stumbled over what could become one of the biggest breakthroughs in the field of CFS.

    A patient with Hodgkins lymphoma also had the diagnosis CFS. To fight the cancer, the patient was given amongst other treatments, the antibody Rituximab. After a few weeks the patients condition regarding CFS-symptoms suddenly improved.

    Completely surprisingly, to both us and the patient, the CFS-symptoms were gone after six to eight weeks after the treatment, says Fluge.

    First in the world
    Through a so-called double blind study, the doctors have tested the drug which is normally used in cancer treatment on patients who had CFS. There was a total of 30 people in the study.

    Half of the patients received saline, while the other half received Rituximab. No one knew who received which of these two, including the doctors or the nurses.

    The group was split up by the pharmacist who drew lots. The drug and the saline containers were double bagged in red plastic. This was done so no one would see who got what, says Fluge.

    In the group that received Rituximab, ten out of 15 had a significant positive effect. Nine of these had what the doctors characterize as a significant improvement.

    Amongst those who received the placebo, only two had a measureable improvement. Only one of these two experienced what is characterized as a strong improvement.

    In medical terms these results are considered to be good.

    Amongst the patients that experienced effects from the drug, the transformations were enormous. They experienced a dramatic improvement in their symptoms. For some patients, the symptoms completely vanished.

    The study did however show that the duration of the effect varies. Most patients have experienced relapse. Meanwhile, the doctors are now experimenting with continued treatments intended to maintain the effect. These treatments appear to be working.

    Could transform lives
    Some might consider administering a cancer drug to CFS patients to be irresponsible. However, Mella and Fluge point out that the CFS patients in some cases are so sick that they are chained to the bed most of the day.
  2. jstefl

    jstefl Senior Member

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    Brookfield, Wisconsin
    wonko

    That is the cost of one treatment. One treatment will last only a few months. A new study is underway to see how many treatments it will take to be a cure. It looks like you will need two injections to start, and then injections every few months for 15 months or so. It is really too early to know for certain. Some patients did better than others, and you have to remember that 5 in the study showed no change.

    John
  3. dasiymay

    dasiymay Senior Member

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    This is great, the results show this is a physical disease plus the patients embraced their improved health (albeit transitory) without needing any CBT from shrinks to overcome any fear of activity! Interesting to see how the Wesselyites will try to get out of this one as they most surely will.

    Also it's good because the researchers were from outwith the ME field being led into the ME field like true scientists and with open minds and hearts.
    justinreilly, Yungas, Nina and 3 others like this.
  4. Helene

    Helene

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    I just looked around the internet to see the other uses for this drug and the list is long: including autoimmune diseases, and Multiple Sclerosis and other illnesses. Check out wikipedia by typing in the drug name. Looks like this drug has been around for some time.

    If anyone hears of other trials being doing now that this has been announced, please post.
  5. currer

    currer Senior Member

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    I think a problem in this paper will be the lack of biomarkers for improvement.

    Apart from the rituximab induced drop in CD20 B cells, all the improvement had to be measured by fatigue scales, physician reported or self reported.
    ixchelkali likes this.
  6. Kati

    Kati Patient in training

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    There are currently over a thousand Rituximab studies on the clinicaltrials.gov register. i can guarranty you that every one of them is paid by the pharma company.

    For those that look at the cost of the vial, you need to know this is not a drug you can inject at home. it needs to be done in the safety of the hospital. Not at your dr's office either. It needs to be titers to only a few cc forthe first hour first as there are chances of infusion reaction that can be serious. ( that is why you need tylenol and benadryl prior to the infusiin, and can stil have reactions).

    Personally I feel we need to show rheumatologists and for the countries like Canada that have socialized medicine, request compassionate access to the drug. Ask your government about clinical trials on a larger number of patients. We need to validate these findings.
  7. currer

    currer Senior Member

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    Following rituximab infusion, there is a time lag, and if the patient is a "responder" improvement starts on average about 3-7 months after treatment.

    Response duration was between 2-15 months (of improvement) before recurrence of ME symptoms, although two patients did not relapse back again from their improvement before the end of the trial. (so they stayed well)

    Once the rituximab is given you see improvement followed by recurrence of symptoms once the therapeutic effect has worn off (and the B cells start to rise again).

    They gave one rituximab infusion twice, two weeks apart. No other infusion was given during the course of the trial.
    taniaaust1 and Yungas like this.
  8. Hope123

    Hope123 Senior Member

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    True.

    But this should also be balanced by both patient, family, and physician reports of function. And indeed, function improved greatly in some of these patients. In the very first case reports, patients were reporting going from housebound/ bedridden states IIRC to going back to school and doing carpentry work. Similarly, two of the 15 patients in this trial went back to full-time work. These were not increases of a few meters on a 6-minute walk test.Even without biomarkers, if these type of functional results hold up, I would be very pleased as there are many thing in medicine we don't know the full answers to but we treat effectively anyway.

    Similar to the prior poster, whether this is autoimmune, infection-related, or likely infection-related and autoimmune, having some effective treatment for the illness, even if it is not a cure, in the interim is most welcome. We don't get to choose the cause of this illness; biology, nature doesn't work that way. I just want the truth or the best approximation of it we can get.
  9. max

    max *****

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    Please someone tell me

    Is this good or bad news?

    Is this why the media did not jump all over Judy/WPI split?

    Is this going to be a long night?
  10. alex3619

    alex3619 Senior Member

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    Hi, still to read the full paper but I wanted to note odds. Two thirds respond to the drug. One in five are in full CFS remission after only two treatments, although with a long wait till full response? Two treatments are less than a month's wages for most people. Bye, Alex

    PS We don't know why one in three don't respond. It could be that they require more treatments. It could also be that there are two different diseases (or more) and that one responds and the other doesn't.
    WillowJ likes this.
  11. kurt

    kurt Senior Member

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    Benadryl prior to infustion? That's not good, a significant number of ME/CFS patients can't take that as it is metabolized by Cytochrome P450 2D6. There is a test though to find out if you have a problem with that enzyme, I know I do.

    I don't think we can presume that this study proves anything yet about the cause of ME/CFS. If you google papers on Rituximab there is some disagreement over the method of action. So with that many papers and still there is controversy for the on-label use, I can imagine time will be required to figure out the mechanism of the off-label use for ME/CFS.

    For example, one paper says the mechanism appears to be suppression of inflammation and tissue damage:

    There may be other theories out there, hopefully someone can validate this experiment, and explain how this might fit in with all the complexities of ME/CFS, at least for 2/3 of us anyway. This will certainly be interesting to follow for the next few years...
  12. Wonko

    Wonko Senior Member

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    I wasnt aware it claimed to say anything about the cause of ME, it's just a possible treatment. I'm failry sure there are lots of treatments out there that dont lay claim to understadning or explaining the condition they are treating.
    Nielk likes this.
  13. currer

    currer Senior Member

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    No thats true.

    Most diseases can be treated (with varying success) but the cause and exact disease process is not understood.

    In actual fact finding cures is often just luck. I think that improvement following treatment for lymphoma has been reported before, these two doctors were the only ones to follow up this observation.

    That may have had something to do with all the recent publicity around ME and XMRV. I can imagine patients who improved following lymphoma treatment reporting it but no action to investigate being taken by the doctors who had never heard of CFS/ME and who were not interested in CFS/ME in their patients, just saw their job as treating the cancer.
    ukxmrv likes this.
  14. Deatheye

    Deatheye Senior Member

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  15. Deatheye

    Deatheye Senior Member

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    You sure? I mean I also prefer something that helps over nothing. But I never would go that far as saying I don't care whats causing it.
    Solving the real cause finally would be bether then fixing the effect of it with live log threatment.
    anne_likes_red and ukxmrv like this.
  16. Kati

    Kati Patient in training

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    I am a registered nurse (till I got sick 3 years ago) I used to administer Rituximab several times a week to cancer patients. Benadryl and Tylenol were administer to lower risk of infusion related reaction- my guess is anti-histamine could be used or a steroid in order to prevent these reactions. I cannot speak to what is done in the auto-immune disease side.

    Personally I'd take the drug yesterday if I could, even if I needed it say, 4 times a year in order to get some quality of life in my life.

    Dr Mella and Fluge mentioned that they will attempt plasma exchange for severely ill patients prior to first infusion of Rituximab for patients that are not likely to tolerate even such infusion- If I remember well, they mention high circulating IgG could be causing trouble for these patients and plasma exchange could help this. These 2 scientists are a joy to have onboard!
  17. currer

    currer Senior Member

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    It is good news. These are very significant improvements from a drug that is already in use for other conditions.

    It proves we do not have a psychiatric illness. (But I an fascinated to see how the British medical establishment deal with this. I cant imagine what will happen)
    Kati likes this.
  18. Deatheye

    Deatheye Senior Member

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    Somehow I'm getting your comment like just ignoring woud be something new or special and unimaginable... ^^
  19. Kati

    Kati Patient in training

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    No Currer they will enroll functional somatic disorder patients, depressed, amd the like to a special Rituximab study. :D
    Bob, Tony Mach, taniaaust1 and 3 others like this.
  20. Helene

    Helene

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    This is a response to Kati. Indeed, patients in Canada would have to organize and ask for compassionate access to this drug. However, as you may know the Canadian medical system is crumbling. Many folks do not have a family doctor. Furthermore, treatments for complex illnesses are simply not available. I don't want to stray off the topic of this announcement today by the Norwegian physicians. But I do want to mention that the system in Canada is in crises--although folks elsewhere often are not aware of what is happening. And middle upper class and upper class folks go to the US or to Europe for treatment. It may have to do with the small population and the skyrocketing prices in medical care, not to mention inefficiency, but I suspect the Canadian government would baulk at requests for this med. A highly mobilized organization of people might make some difference, but it would take a dog's age.

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