Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Rituximab Phase III - Negative result

Discussion in 'Latest ME/CFS Research' started by Marky90, Nov 21, 2017.

  1. Benji

    Benji Norwegian

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    30 million kroner, which is 3 mill pounds.
    Charity (Kavlifondet) donations and the Norwegian state.
     
  2. Benji

    Benji Norwegian

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  3. Benji

    Benji Norwegian

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    Sorry for the big picture
     
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  4. hinterland

    hinterland

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    It doesn't surprise me that SW makes this comment. There have been other trials of monoclonal antibodies in medical conditions he considers to involve both physical and mental pathology, like schizophrenia and depression. He is on record as saying the research was probably warranted.

    He knows which way the wind is blowing, and is a master at maneouvering himself into position on higher ground. It is also rather a good chess move, when it comes to his role as chief defender of the PACE trial.
     
    Last edited: Nov 26, 2017
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  5. hinterland

    hinterland

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    I'm sure something has gone awry with the translation here. I can guess what Olav Mella is meaning to say, but does anybody know how that part should read exactly?

    "we could not let the patient group get out of bed for months and wait for the study to be published,"
     
    Jo Best and TreePerson like this.
  6. Benji

    Benji Norwegian

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    Get out of bed, hahahah. That’s a good one.
    It was «gå i spenning», which means be waiting in excitement and uncertainty.
     
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  7. fingers

    fingers Senior Member

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    SW Endland
    'Small sample size' is kinda at odds with 'big data' :(
    Your second point was exactly what I meant with 'Before treatments could be researched and tested, identification and diagnosis would need firm agreement.'
    I think such an approach requires two main phases: 1) understand and define the problem, 2) solve the problem. Possibly with iteration of these two as more data is collected.
     
    pattismith likes this.
  8. fingers

    fingers Senior Member

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    That'd be enough to fund a quality study on antiretroviral therapy. One hasn't been done, and many are experimenting with it. Rituxiab has had a shot, ART next folks.
     
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  9. gregh286

    gregh286 Senior Member

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    Wouldnt be surprised if ART did well.
    With such low NK numbers and activity between us bound to have high viral loading.
    Would love to see an NK improvement trial.
     
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  10. TreePerson

    TreePerson Senior Member

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    @Benji explained that it was kroner - so £3 million. Just in case you hadn't seen that. :)
     
  11. Wonkmonk

    Wonkmonk Senior Member

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    Just heard the news. Bitter. But perhaps it's worth pointing out that an article in the New England Journal of Medicine found no effect for Valacyclovir in CFS/ME patients in 1988. Only later did Dr Lerner and Dr Montoya find a subgroup of patients actually do respond and that co-infections also play a role.

    So as many others pointed out, the next question is to see if there is a subgroup of patients who respond to Rituximab. As @Gingergrrl pointed out, her reaction is likely no placebo and she probably isn't just one in 8 billion.
     
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  12. ljimbo423

    ljimbo423 Senior Member

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    That's a really good point. How many have other illnesses and how much does that skew the results? Until a bio-marker is found we can't even be sure of any single studies results.

    One of the biggest reasons being that we can't be sure how many in the study actually had CFS. I do my best to put the results of all studies I read, in the context of all the others I have read and try to make some connections.

    Jim
     
  13. fingers

    fingers Senior Member

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    SW Endland
    Oh crumbs, we'd have to settle for a 3rd rate researcher then. Somebody like that charlatan Mikovits instead of a true professional like Lipkin ;););););););););););););););););););););););););)
    :rofl::rofl::rofl::rofl::rofl::rofl::rofl::rofl::rofl::rofl::rofl::rofl::rofl::rofl::rofl::rofl::rofl::rofl::rofl::rofl::rofl::rofl::rofl::rofl::rofl::rofl::rofl::rofl::rofl::rofl::rofl::rofl::rofl::rofl::rofl:
    sorry, hate laughing at my own jokes but I've just creased myself up!!!!!!
     
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  14. fingers

    fingers Senior Member

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    If we eventually do get to the point of clearly defining and diagnosing sub-groups, then logically we will have discovered different diseases which have common symptoms. I'm not expert in aetiology (yikes UK spelling shows as correct!), nor pathogenesis, but this would be logically correct...no?
    As I type I am questioning myself...what about T1 vs T2 diabetes? Quite similar symptoms, different aetiology and pathogenesis. Different treatment, but with some overlaps, e.g. insulin, but this really isn't the way to go for type 2.

    If we start with 'fatigue', then we will be all over the shop...I suggest not to start with fatigue.
    :rofl::rofl::rofl::rofl::rofl:
    Oh no, did it again :zippit::zippit::zippit::zippit:
     
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  15. Gingergrrl

    Gingergrrl Senior Member

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    I was wondering if you had heard the news yet @Wonkmonk and hoping you were doing okay and not too disappointed. Interesting comparison re: anti-virals and I knew there had been studies on ME/CFS patients with negative results but I also knew from Dr. Lerner's studies and anecdotally that they have helped many people (even though they did not help me).

    I know there is a sub-group (or people who actually have a different illness) who are responders b/c they keep contacting me via PM even though very few are sharing publicly.

    That was my feeling as well.
     
  16. Wonkmonk

    Wonkmonk Senior Member

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    I'm doing OK, I am lucky to have a treatment I respond to (Valacyclovir), at least to some degree. I think it's very disappointing for those who tried everything and nothing worked and Rituximab is the last best hope at the moment.

    But I think we should not give up hope entirely. As someone pointed out before, the response pattern in prior Rituximab responders with CFS is similar to those with Rheumatoid arthritis. They get better and then worse again and then better again with the next Rituximab. Is this all a placebo effect? I think not.

    CFS is probably not one disease, but perhaps 5-10 diseases with similar symptoms (Typ 1 vs 2 diabetes was cited earlier as an example). I think it's like with the Valacyclovir: Researchers have to better understand for which patients and under which circumstances Rituximab can be helpful. I certainly think not all hope is lost at this point.
     
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  17. Gingergrrl

    Gingergrrl Senior Member

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    I'm so glad you are doing okay, Wonkmonk, and that you are responding to the anti-viral.

    I totally agree.

    I agree with this as well.

    That is my hope, that the researchers will figure out the sub-group that does respond to Rituximab, and why they responded, and this will lead to additional research. I do not think that all is lost b/c they did not get the results that they were hoping for (and we still don't know what the final complete results will say).
     
    Jo Best likes this.
  18. justy

    justy Donate Advocate Demonstrate

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    He is speaking Flemish - from the Flanders region of Belgium. Its a variation of Dutch. KDM also speaks:Dutch, French and English at a minimum, as do a lot of people in Belgium.
     
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  19. pamojja

    pamojja Senior Member

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    Interesting. As a German speaker myself I understood whole parts of sentences as if straight out of a German dialect. Therefore I too wondered. Thanks.
     
  20. andyguitar

    andyguitar Senior Member

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    Probably Krone.
     

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