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Prof. Mella - Autoimmunity and metabolism in ME/CFS (lecture)

Discussion in 'General ME/CFS News' started by Kalliope, Jan 25, 2018.

  1. Kalliope

    Kalliope Senior Member (Voting Rights)

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    Here is a lecture from prof. Olav Mella from a conference in Oslo November 2017.

    Language: Norwegian
    Subtitles: English
    Duration: 26 minutes

     
    Last edited: Feb 5, 2018
  2. Kalliope

    Kalliope Senior Member (Voting Rights)

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    English subtitles added.

    The talk is about autoimmunity and metabolism. Mella also mentions RituxME and CycloME.

    CycloME has preliminary good data, it appears - and they are planning to do a double blind study on cyclophosphamide.

    Mella strongly advises against testing treatments outside of clinical trials.
     
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  3. Inara

    Inara Senior Member (Voting Rights)

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  4. BurnA

    BurnA Senior Member (Voting Rights)

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    Is that possible?
     
  5. Inara

    Inara Senior Member (Voting Rights)

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    This is a highly interesting video! He talks about so much different topics: Metabolics findings (Naviaux, pyruvate kinase, high lactate levels, also in the brain), the study where they combined grown muscle cells and blood by ME people, vascular stuff, orthostatic intolerance and many more.
     
  6. Inara

    Inara Senior Member (Voting Rights)

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    Mella said in the video the findings were positive so far.
     
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  7. Kalliope

    Kalliope Senior Member (Voting Rights)

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    I assume the tricky part is how to make sure it is a properly blinded study when the drug gives side effects as nausea. But this must be a rather common obstacle in research into drug therapies, so there are solutions I hope.
     
  8. Daisymay

    Daisymay Senior Member (Voting Rights)

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    Thanks Inara, that sounds fascinating, can't wait to see it when they get the sub-titles.
     
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  9. Kalliope

    Kalliope Senior Member (Voting Rights)

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    Subtitles are there. Will edit the first post to make it more clear :)
     
  10. Inara

    Inara Senior Member (Voting Rights)

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    Yes, I don't speak Norwegian. There are English subtitles.
     
  11. Perrier

    Perrier Established Member (Voting Rights)

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    Thank you very much for all your hard work Kalliope.
    Most interesting talk and most interesting physician.

    Oh when, when will they crack this?
     
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  12. Kalliope

    Kalliope Senior Member (Voting Rights)

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    You are welcome. I also got A LOT of help from a fellow member of the forum, @Woolie :hug:

    Yes, when will this disease be cracked open??
     
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  13. Perrier

    Perrier Established Member (Voting Rights)

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    Then thank you dear Woolie.

    Translating is not easy. I know what it requires. And so thank you all because you are also challenged by your illness.
     
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  14. Samuel

    Samuel Senior Member (Voting Rights)

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    thank you for the subtitles.

    my fogged review:

    vascular. could account for multisystemness.

    metabolism also. much bigger study than naviaux. men and women different as we knew.

    autoimmune not certain if only at one stage or at all stages. [or similar. seemed to say m.e. is autoimmune.]

    men and women different because women need to ease up on attacking foreign stuff for child. [i knew this but forgot why this makes sense. why wouldn't men be more autoimmune then?]

    ritux negative but still subset is possible. but not distinguishable clinically.

    nausea in cyclo is /not/ just a generally problematic drug. m.e. gets more nausea. [why?]

    something in our serum.

    impression: real scientist. seriously working on m.e. wants to /know/. no nonsense. doesn't focus on just a couple of systems to fit his theory; fits theory to facts. need more people like this guy.
     
    Last edited: Feb 6, 2018
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  15. Woolie

    Woolie Committee member

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    Good question! Mella says that a lot of PwMEs experience nausea. You wouldn't necessarily know if you were on the placebo, but you have a fairly good chance of knowing you're on the active drug.
     
  16. Trish

    Trish Moderator Staff Member

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    Would it be ethical to put something in the placebo that induces mild transient nausea to help with blinding, provided patients were warned of this and gave permission?
     
  17. Kalliope

    Kalliope Senior Member (Voting Rights)

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    I think in principle no. But am curious to learn how other researchers have solved this problem in previous studies.
     
  18. BurnA

    BurnA Senior Member (Voting Rights)

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    For cancer trials I don't think placebos are used, the outcome is usually 100% objective so blinding is less important.
     
  19. Milo

    Milo Senior Member (Voting Rights)

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    I was a chemo nurse administering clinical trials. In blinded trials, patients would receive pre-meds as per protocol because remember, even the staff would not be aware what they are administering, but assuming for safety reason that the patient recieved the real medication). And yes placebos are used in oncology but these days the bulk of the clinical trials compare a treatment regimen against another. Since they are drug cocktails (example, cytotoxic and biologic versus cytotoxic alone) pre-medication is the same for both treatment lines.

    In this case, Cyclophosphamide vs placebo, there will be patients in the placebo group experiencing nausea simply because they believe they have received the chemo drug. Regardless, the investigators are likely to premedicate everybody with the same nausea medication before the infusion, and use a nausea protocol (take x pill every 4 hours if nauseated) for after the infusion for everyone. I am not totally sure how long patients with ME will feel nausea for, but usually for a low dose Cyclophosphamide, it is never much more than 48 hours if that.

    My 2 cents.

    Edit to add: the placebo response being what it is, you will have patients who feel much better a few days after getting their infusion and believing for sure theygot the real deal. We will find out when they publish again. Fortunately it is not as long a trial as for Rituximab.
     
    Last edited: Feb 7, 2018
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  20. Milo

    Milo Senior Member (Voting Rights)

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    If there is a transcript i would love to have a copy. I am unable to watch due to cognitive issues.
     

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