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Norway's Directorate of Health Apologises for Treatment of ME Patients

Discussion in 'Rituximab: News and Research' started by Min, Oct 22, 2011.

  1. Min

    Min Guest


    Nielk, justy, Roy S and 1 other person like this.
  2. heapsreal

    heapsreal iherb 10% discount code OPA989,

    australia (brisbane)
    Interesting! So will Wessely being doing the same?????????????????
  3. Deatheye

    Deatheye Senior Member

    Interesting but how does that help anyone? How does it help the people that got even worser caus of the way they got threathed? ... At least i hope this is a sign that something chanfes and that it spreads over to other countrys.
  4. LaurieM


    The statement from the Norwegian Directorate of Health:

    At least the Norwegian government has shown it has the guts to own up.

    heapsreal - I wouldn't hold your breath about Wessely, or the British Government come to that, but I will definitely be asking for an apology from my GP when I next see him.
  5. maddietod

    maddietod Senior Member

    East Coast, USA
    I admit to being an eternal optimist, but I think this is a game-changer. A government has said that the Emperor needs some clothes.
    busybee, Nielk and Ocean like this.
  6. Dreambirdie

    Dreambirdie work in progress

    N. California
    Norway has a much more liberal and socially conscious government than most.

    Our government agencies PALE in comparison, and are a LOT slower to admit their mistakes.
    Nielk and Ocean like this.
  7. Boule de feu

    Boule de feu Senior Member

    Ottawa, Canada
    And this happened just because a team of scientists figured out that a drug was helping ME patients?
    And this study hasn't been replicated, yet...
    What the heck???
    I don't quite understand, can someone explain this to me?
  8. Sean

    Sean Senior Member

    Wessely, et al, will never acknowledge let alone apologise for the quarter century of appalling carnage they have wreaked upon hundreds of thousands of sick, vulnerable, innocent patients and their families.
  9. justinreilly

    justinreilly Senior Member

    NYC (& RI)
  10. Tony Mach

    Tony Mach Show me the evidence.

    Upper Palatinate, Bavaria
    Well, the drug does quite down a part of the immune system. They did a small test in a couple of people before and now they did test the drug in 15 patients (and had 15 patients as controls). The drug helped 10 out of 15 to get rid of ME, apparently completely. In the control group (who were given 'just' saline solutions), only 1 out of 15 improved 'significantly'.

    So it helps about 66% of patients.
    When it helps, it seems to *really* help.
    And the mode of action of the drug suggest that ME is a "autoimmune" disease.
    10 out of 15 patients (and only 1 out of 15 in the control group) is a size which gives you a good indication already.

    Usually, if the reseachers dotted all their i's and crossed all their t's, this is enough to make a judgement in the medical community. Usually (but not always!) this will hold up in a larger trial.

    When this holds up in a larger trial, this will be huge for ME/CFS.

    BUT, I will wait until a larger trial until I say: "Yeah, it is definitely so". I think this can hold up, but after the XMRV debacle, being a nice&helpful researcher who gives patients hope isn't enough for me to make a judgement I want resilient hard facts (e.g. what Alan Light did).

    (And I wonder, why isn't anybody mentioning Ampligen? We know it helps ME/CFS patients, we know it does something to the immune system. Oh, right, Ampligen is not from a big respected pharma company)
  11. ukme

    ukme Senior Member

    Sorry I haven't had time yet to read all about this Norwegian trial, but can you tell me if the 10 people who are recovered have to continue taking this drug, or now they are better they don't have to?
  12. Sasha

    Sasha Fine, thank you

    Hi Tony - alas, the 10/15 patients in the Rituximab group had a "major or moderate response" which for most patients didn't extend beyond the follow-up period. However, that's 10/15 in the Rituximab group versus 2/15 in the placebo group (67% vs 13%), hence the excitement. Two Rituximab patients and one placebo patient appear to be recovered; the placebo patient was found retrospectively not to fit the Canadian Consensus Criteria (patients were selected according to the 1994 Fukuda criteria) so may not have had ME.

    This is fabulous news, a government apologising to ME patients for years of failure to treat them properly for their physical disease. Let's hope that that apology makes it into the news media of other countries.
  13. Sasha

    Sasha Fine, thank you

    Hi ukme - as per my post above, they are mostly not recovered. The study authors are now doing a new study to see what dosage schedule of Rituximab might help people to get more improvement and to maintain it. Rituximab has risks and as far as I'm aware, if you're recovered (as two of the Rituximab group seem to be) it might not be seen as wise to take more of it if your body is doing OK on its own.
  14. Enid

    Enid Senior Member

    Great news - thanks Min - setting the pace for all now.
  15. klimt


    Hey guys, this is fantastic news really - a major breakthrough. Weasel and his little buddies should be jailed for life, and that is probably too much kindness to be showing the little rat of a man. Alas, what are the chances?

    Can anyone tell me where I can find out about putting my name forward for the next round of European clinical trials?
    currer and Enid like this.
  16. SOC

    SOC Senior Member

    IMO, this is an example of what I call The Fibromyalgia Effect. Fibro was a controversial diagnosis that was also often considered a psychiatric illness until they discovered a medication to treat it. Then all of a sudden, even though no one knows the cause or much else about it, fibromyalgia becomes a "real illness" in the eyes of physicians, politicians, and the media. It was very real all along, but didn't gain acceptance until there was a treatment.

    We're looking at the simple-minded approach of physicians, politicians, and the media -- if a medication works for an illness, even in very beginning studies, then the illness is real. We don't need replications, etc (at least in the short term). We have our simple answer. HGRV was never a simple answer for physicians -- far, far too many complications to figure out still.

    It isn't about science
    Physicians are not scientists, or at best they are technicians. Highly paid and self-important technicians in many cases, but still technicians. The difference is that a true scientist is trained in the principles of science itself and understands underlying concepts of the particular field and can apply them to novel situations. Technicians work from rules of thumb and other simplifications created by scientists. They are not expected to understand the details and subtleties and rarely know when they can and can't extrapolate their simplifications beyond the data (although physicians often do, nonetheless). Physicians are memorizers, not problem-solvers.

    So, if the physician has an simple answer (he can give you xxx medication, or you have yyy result on a blood test), then you have a real illness, whether or not he knows anything more about it. When he doesn't have a simple answer, he doesn't have the problem-solving skills to understand that something is going wrong that he doesn't have the simple answer for.

    To make matters worse, physicians and politicians have been allowed to develop a better-than-everyone-else mindset that makes many of them unwilling (or unable) to admit the limitations of their knowledge and understanding. If they don't have an answer for your problem, it's much easier for them to claim you don't have the problem than to admit that you have a problem they don't have to tools to handle. Hand 'em a simple answer and they'll embrace your problem and pat themselves on the back for being so helpful and smart. Hand 'em a difficult problem and they'll hang you from the nearest [derogatory description] tree for making them look and feel incompetent. :rolleyes:

    And besides
    It's much easier for society to cope with the concept of another autoimmune disease than it is to consider a new epidemic pathogen. Not so scary. It probably won't happen to them. There's probably a degree of relief in accepting autoimmune disease rather than a pathogen. (That isn't to say that there may not be a pathogen causing the autoimmune disease, but we're looking at simple thinkers here. Autoimmune = we have ways to deal with that)
  17. Tristen

    Tristen Senior Member

    Northern Ca. USA
    Good on Norway! And what a great model for other health agencies needing to step up. Who amongst them has the integrity?
    currer, justinreilly, kurt and 3 others like this.
  18. ixchelkali

    ixchelkali Senior Member

    Long Beach, CA

    I think it does help people. It signals that ME/CFS patients are not malingerers, that they are sick, that doctors need to take them seriously, that their families and friends should treat them as someone with a serious illness, that they may need supportive services. That's got to make their lives easier. Plus, who knows how many patients there are who have been told to deny their own reality, told that they're not really ill and in pain, told that they should be able to think themselves well if they only had the right attitude, who believed it? Patients who have thought they must be crazy? Having their reality validated can only help, and under the circumstances an apology is appropriate.
    currer and Ocean like this.
  19. Sasha

    Sasha Fine, thank you

    We're starting to get media coverage in the UK (BBC, Daily Mail) on the Rituximab story and for those media that allow comments, I think the Norway govt's apology is something we should be shouting about, because it shows that even a govt has seen, as a result of the Rituximab study, how badly we've been treated. That should really make people in our other countries sit up and take notice. I hope it will get reported in our media. I've posted such a comment in response to the Daily Mail article.

    As the sun comes up on the US today, we might get more coverage there too. Please take the opportunity to comment.

    I look forward to the day we get such an apology in the UK. For now, it seems just a dream. I know I'll be crying with relief if it ever comes.
  20. SilverbladeTE

    SilverbladeTE Senior Member

    Somewhere near Glasgow, Scotland
    Oh he will admit he was wrong, but be mealy-mouthed about it AND after it's been absolutely done ot death (proof he's wrong) as if he doesn't apologize he'll lose his medical licence etc.

    Note how he started bringing up the HPA Axis issue late in the game, no doubt to cover his ass one day, his "get out of jail" card (I've said that before, never udnerestimate how cunning such folk can be).

    But hey, maybe I'm wrong...however nothing the man has done though in public, that I have seen, suggests humility, compassion, wisdom or genuine concern for patients rather than his absiolute conviction in his belief system and pushing that onto patients or facts and fitting them to his view, rather than than the other way around.
    (What I believe he has done is so awful, so evil, I must give one straw to clutch, one benefit of the doubt to the man, for whole bunch of reasons, sigh)

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