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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. Medman99

    Medman99

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    Even though I am schooled in allopathic medicine, what I believe has helped me the most was applied kinesiology testing of any substance that was going into my body, by a skilled practitioner. I agree that supplements, herbals, vitamins and the like can be just as dangerous as meds. But IV pharmaceuticals are absolutely the worst thing you can do, imho.
    I lucked out and found someone who was accurate in finding out what was making me sicker and what was making me better and have acted accordingly since. For instance, common knowledge is that Vit D is a wonderful supplement that will cure all of your ills. Quite the contrary for me. It was literally making me much, much sicker. I was muscle-tested on it and of course was weak for it. Without kinesiology I would have never known this and probably would have kept taking it thinking, I was "herxing" or some such nonsense.
  2. Medman99

    Medman99

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    Hannah, I have no doubt there are those who have an infectious component to their problems. But if it is solely an infectious cause, why doesn't everyone on planet earth have it? Why does it only effect certain people? Why do some people tolerate stress and others go to pieces? The best theory I have come across to date is by Steven Rochlitz. It makes the most scientific sense to me, and I am a scientist by training! Blesssings.
  3. urbantravels

    urbantravels disjecta membra

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    It's been kind of interesting to watch the anti-Rituximab memes developing. I expect, even if it completely proves out as an accepted treatment, even if it cures people, there will be those who cling to the fringe, just as there are with cancer and other diseases with "accepted" treatment options, because there will always be those who don't like the available treatments for whatever reasons.

    Sure, cancer treatment can suck a lot, and sometimes it sucks too much to be worth it because it doesn't have great odds of success in certain situations: in other situations the odds are a lot better. (Hey, you know what most cancer patients have that we don't have? Information about the ODDS OF SUCCESS of one treatment over another! Based on Science! But there will always be those who want a 100% guarantee or else, and there ain't no such thing.)

    Anyway, about the anti-Rituximab memes: I see some bees busily going back to the hive and returning with the message that "Auto-immune diseases aren't real! When they tell you a disease is auto-immune, it's a crock!" Which will come as unpleasant news to the people with lupus, rheumatoid arthritis, etc., who are pretty sure they have real diseases. Like us, they are similarly dissatisfied about knowing the ultimate cause of their illness; but unlike us, they at least have some therapies in place interrupting the pathological processes of their disease to SOME degree.

    Joining the auto-immune club doesn't mean joining the most privileged club out there, that's for sure. I mean, they may look a *tiny* bit privileged compared to where we are right now, but in the bigger picture, they're still relatively starved for research funding and, to a large degree, respect.

    I suspect the bigger pattern, historically, that we can't currently see will have a lot to do with our toxic environment - and I don't mean "toxic" in the knucklehead personal way people interpret it, which is "Something I can avoid by eating organic food, or purge from my body by doing a 'cleanse'!" I mean the chemical soup we've come to live in and accept, which none of us can avoid or "cleanse" ourselves of in any effective way. We are sold a line of thinking that our health is our personal responsibility (because large and powerful interests benefit from us fully absorbing this attitude), and so we mistakenly think "Get away from my arm with that needle!" addresses the right problem and fulfils our duty to act.

    I think we're constantly being distracted from the need for political action by the repeated re-direct to our own personal bags of skin. Yeah, you want to do basic stuff to take care of your own health, but sometimes bad stuff happens to you that's (a) not your fault (b) not something you could have avoided and (c) not something that you can rid yourself of with any course of action currently available to you. You want that to change, look up the chain to where the buck stops -- don't spend all your energy wandering up and down the supplement aisle.

    Sez me. Carry on with whatever you were discussing.
    Sidereal, madietodd, wdb and 5 others like this.
  4. eric_s

    eric_s Senior Member

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    I'm not somebody who takes medication just like that, without thinking, so far i have not taken any with regards to ME/CFS, even though i think antivirals are interesting. But i don't understand why many people seem to dislike pharmaceuticals and evidence based medicine and rather trust alternative methods. Unfortunately so far there is no very good treatment for ME/CFS yet, but to me it's totally clear that in the end we will need a "normal" medical treatment, just like everybody else, and that will probably be a pharmaceutical treatment. Some drugs have side-effects or are even toxic and i don't like this either, but usually that's still better than to have an illness wrecking your body and stealing your life.

    I haven't read the discussion between critics and Fluge and Mella, so i might have missed something important, but i don't care too much what Van der Meer and that kind of people say. There will be larger studies and already other groups have picked up these findings and are interested as well. And this time it's a university hospital and not a small private institute like the WPI, this is a difference. From what i've read the Norwegian gov't is behind this and even proud of what their researchers are doing, even though it would of course be nice to also give more money, not only words. Van der Meer and friends can talk all they want, if Fluge and Mella are right the new studies will prove that and the argument will be over, i guess.
  5. Sing

    Sing Senior Member

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    I'm with you, urbantravels. My sense is that Rituximab will turn out to be a very helpful treatment. I also think that the autoimmune hypothesis is a good one. I feel I AM in the company of lupus and rheumatoid arthritis. But I'm waiting for further research results. If they come back good results, and the treatment is accepted--as in with insurance coverage--I will definitely do it. I am ready to leave this illness behind, or as far behind as I can get it. Years of trying alternatives, cures, protocols and allopathic symptomatic medications have me in a slowly sinking ship. Not waving but drowning. I am ready to try this!
    wdb likes this.
  6. Snow Leopard

    Snow Leopard Senior Member

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    I agree with your interesting perspective urbantravels...

    The fact is that if we take a scientific perspective then we have no choice but to continue investigating if and why Rituximab works. It is a bit silly to say "Oh we don't like CFS falling into the autoimmune camp because they don't have highly targeted treatments", because either way we don't actually have any choice except pursue the underlying science.

    There are a significant minority of ME/CFS patients who have never had CMV/EBV/HHV6 (I've had multiple antibody tests for CMV/EBV as well as PCR by VIPDx for CMV/EBV/HHV6 and all were negative). It was a (oral polio) vaccination that first triggered my disease. It is not so much the virus/trigger, but how the immune system responded to that trigger that causes the disease in my opinion.
    Sing likes this.
  7. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Alittle off topic here, but when researching herpes viruses like ebv/cmv, they usually say that most adults have been infected with these viruses, some get a mono type illness many dont get any symptoms or maybe had them as children and dismissed as a common viral infection like a cold. I often wonder if those cfs patients that test neg to these infection just dont produce any antibodies, so common tests say they are negative. I have mentioned this before, but i have tested positive to ebv(had mono illness) when i first came down with cfs, several years later and before any antivirals i have tested negative to ebv for any past infections and a PCR ebv test(maybe testing isnt 100%?). Im not saying that people dont test neg but maybe more likely in cfs that they arent producing antibodies.

    As for ritux, isnt there a non-autoimmune theory that b-cells carry these herpes viruses, so potentially keep these infections active. Im not either for or against auto-immunity being cause of cfs but these herpes infections seem to be prominant in many auto-immune conditions. I think it requires alot more research to rule out infectious causes of auto-immune illnesses, or cfs being an auto-immune illness itself. Maybe when they find a cure for cfs/me, this might open up a whole new theory on auto-immune conditions. I think generally in medicine that there is alot more they dont know then they actually do know, i think this is why many conditions are only treated symptomatically??

    We just have to wait for the research to come out, they just have to be careful and take their time, now hurry up, lol

    cheers!!!
    Sing likes this.
  8. oceanblue

    oceanblue Senior Member

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    Large SF-36 gains confirmed

    A while back I posted that the gains in SF-36 Physical Function (PF) scores were modest, but that was based on the mistaken belief that the data in Table 4 was for the traditional raw (0-100) scores; Dolphin pointed out that they were probably norm-based scores instead. Fluge et al have now confirmed that the scores are norm-based scores and crucially that the percentage increases are also based on norm-scores. This means that the raw 0-100 score gains are whopping compared with other clinical trials, such as PACE. Data below.

    Norm-based scores
    Rituximab: baseline 34, mean max increase 39% -> est. mean max score = 47.3
    Placebo: baseline 35, mean max increase 11% -> est. mean max score = 38.9

    Traditional 0-100 scores
    converted from the norm-scores above

    Rituximab: baseline 44.9, mean max score 76.5; gain = 31.6
    Placebo: baseline 47.3, mean max score 56.5; gain = 9.2

    I don't know if you can directly compare the Rituximab gain with the placebo gain without using more sophisticated stats, but loosely speaking the Rituximab group increased by 22 points more than the placebo control group.

    In the PACE trial, CBT and GET were respectively roughly 7 and 9 points better than the comparison group, though the trial was unblinded with no placebo group, making it susceptible to self-report bias.

    In my view, even though these are peak improvement figures, the results are awesome, showing that something important is going on here.

    (Note that Snow Leopard had already posted the raw scores for Rituximab, I've added the comparison with the control group.)
    Sing and Dolphin like this.
  9. oceanblue

    oceanblue Senior Member

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    Health warning on these SF-36 scores
    1. These are maximum change figures which will make any results look better. On the other hand, given the transitory response, and the fact that patients peaked at different times, these maximum change figures are a good way to show how big an effect Rituximab can have.

    2. The SF-36 PF score is a secondary outcome. Trawling through lots of secondary outcomes to find one figure that looks really good is rightly frowned on. However, the SF-36 PF scale is often used as a primary outcome, not least because CFS is defined by disabling fatigue and the SF-36 is a reasonable way of measuring reductions in capability. Personally, I think some measure of activity/funtioning should be a primary outcome for any CFS trial.

    3. The gains are based on the estimated mean maximum scores, since the actual maximum scores aren't given (see 'small print' box above).

    Nonetheless, I'm surprised the authors haven't made more of these figures.
    Dolphin likes this.
  10. Snow Leopard

    Snow Leopard Senior Member

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    There was a big review paper on self report questionnaires that suggested that the SF-36 and particularly the PF scores were the least dodgy out of all the questionnaires.

    http://www.ncbi.nlm.nih.gov/pubmed/21590511

    Using mean-max however is slightly dodgy, but then it is difficult to properly capture the magnitude improvement when we are talking about differing response times to the drug.
  11. Esther12

    Esther12 Senior Member

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    I don't think that meaningful comparisons with PACE can really be made. PACE had all sorts of potential problems with placebo (well beyond the mere concerns of non-blinding), but the Rituximab's min-max figure is a strange way of measuring results.

    Thanks to those who helped get a bit more understanding of the SF-36 PF figures though, as it does provide some extra context to the results, and the sorts of improvements being shown.
  12. oceanblue

    oceanblue Senior Member

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    Thanks for pointing out that interesting study, Snow Leopard. Dolphin posted a thread on it.

    I agree you can't exactly compare the two but I don't think it's unreasonable to say that the scale of the Rituximab effect, though transient, was much bigger than the effects seen from CBT & GET. Obviously the Rituximab findings need to be replicated but they do look promising.

    One thought on the effectiveness of blinding, which is crucial to interpreting the study results. The peak response for the placebo group is seen at the first measurement interval (0-16 weeks) ie not long after 'drug' administration, which is exactly what you'd expect for placebo effect. By contrast, the peak response for the Rituximab group is much later at 24-32 weeks - that's much later than you would expect for a placebo0 effect (eg if the blinding had failed and the patients were showing a super-placebo effect from knowing they really were on the trial drug.
  13. Tia

    Tia Senior Member

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    Yeah, but that doesn't mean they think we're imagining the illness but that they want to cover a wide area of possibilities where they can find out more about our sickness, what works for us and what doesn't, understanding the illness that is and to know what to do when rehabilitating us out into work again after the rituximab-treatment, I guess. I have NEVER gotten any kind of doubt from ANY doctor I've seen here in Sweden. Never. It's like they see I'm sick and never doubt me. Never, not even when I was a child.
    They just haven't been able to figure out what the hell was wrong because of all the tests showing up normal. But now, when Fluge and Mella is working on a test and if the test is completed, we can prove outr illness and don't have to exclude everything else. because when thinking back, they really have searched every thing possible when it comes to me..they've even given me a CT-scan of my brain just to make sure it wasn't some small braindamage. So they really have tried their best. Just sayin' don't expect the worst because they're really okay and trying to learn about this. :)

    However you can't travel here and want to get into this program because as the text say, they only take in swedish people from the city of Stockholm and all the careplaces are filled, so.. But don't worry because it will come all over the world. Sweden and Norway is just the begining. You will ALL get your chance. ;)
  14. Tia

    Tia Senior Member

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    But wait.. Infectious meaning XMRV, or..? Because the norweigans say it's autoimmune. And I have been proven to have an autoimmune just this summer so it all fits in..what about you guys? I'm so curious! :D I've heard many here has Graves disease?
  15. urbantravels

    urbantravels disjecta membra

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    Physical therapy CAN be helpful for ME/CFS patients, properly applied. So can counseling.

    Proper application of physical therapy: "Energy envelope" counseling, very careful attempts to manage physical activity to maintain function while avoiding flare-ups, targeted therapies as needed for specific issues (for instance, I have huge neck problems, apparently triggered by bad biomechanics from my fatigued muscles and a degenerative disc - physical therapy has helped me keep that somewhat under control.)

    Improper application of physical therapy: Encouragement of physical activity with the assumption that it will be able to increase to normal or anywhere near normal levels, or with the assumption that "pushing through" bad reactions is EVER a good idea.

    Proper application of psychological counseling: Supporting patients dealing with an extremely debilitating and little-understood illness and all its consequences: disability, pain, social isolation, etc. etc etc.

    Improper application of psychological counseling: "Therapy" designed to "gaslight" patients by encouraging them to believe that they aren't really as sick as they feel, that activity isn't really as damaging as they know it is, and that the right mental attitude would be to think of oneself as "not sick" and to act accordingly.
    justinreilly, kurt, wdb and 3 others like this.
  16. redo

    redo Senior Member

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    Autoimmunity comes for a reason, and that reason can very well be infections...
    Klmrav likes this.
  17. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Agree, horse or the cart that comes first??? Many auto immune conditions mention a relation between ebv and other viruses and autoimmunity.
  18. Klmrav

    Klmrav

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  19. madietodd

    madietodd Senior Member

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    You have to be a member to read the article. Can you give us the gist of it?
  20. Snow Leopard

    Snow Leopard Senior Member

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