Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
Determined to paper the Internet with articles about ME, Jody Smith brings some additional focus to Severe Myalgic Encephalomyelitis Day of Understanding and Remembrance on Aug. 8, 2017 ...
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Update: 2 video clips with subtitles: Fluge interviewed+new study

Discussion in 'Latest ME/CFS Research' started by deleder2k, Jan 5, 2017.

  1. deleder2k

    deleder2k Senior Member

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    The study "Metabolic profiling indicates impaired pyruvate dehydrogenase function in myalgic encephalopathy/CFS" is discussed in detail here.



    Video number two with a interview with Fluge (starts around 3:50):

     
    Last edited: Jan 10, 2017
    J.G, Joh, Hutan and 42 others like this.
  2. Sasha

    Sasha Fine, thank you

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    Still wishing I lived in Norway. :(
     
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  3. deleder2k

    deleder2k Senior Member

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  4. Forbin

    Forbin Senior Member

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    "The overall findings in this study shows that the disease is not located between the ears of the patients - but in their blood." ~ Olav Mella




    GO NORWAY! :thumbsup: (Land of my ancestors!)
     
    Sing, Joh, Jan and 28 others like this.
  5. alex3619

    alex3619 Senior Member

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    Logan, Queensland, Australia
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  6. Jennifer J

    Jennifer J Senior Member

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    A little off topic for a moment to dream, to go with the promising research from Norway.

    Yes, Alex, we must get you cured so you may live in Norway for a few years :), and all of us cured, too. It's so beautiful there. If I ever got married I wanted to have my honeymoon there. Otherwise, I'm up for riding ferries up the fjords and eating cheap, in a toothpaste looking tube, caviar everyday with baguettes.

    3bc6004d3fd9fad4df336188e50c99f3.jpg

    38807hd.jpg
     
    Aroa, bertiedog, Jan and 15 others like this.
  7. Cheesus

    Cheesus Senior Member

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    I started trying to learn Norwegian once. I think I will stick to Spanish.
     
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  8. Sasha

    Sasha Fine, thank you

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    justy, L'engle, Jo Best and 5 others like this.
  9. A.B.

    A.B. Senior Member

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    I'm happy to see that the view that patients with this illness should be treated with dignity and respect is spreading in Norway.
     
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  10. Sasha

    Sasha Fine, thank you

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    @deleder2k - English subtitles have now been added to the video (and play in the video embedded in your original post).

    Do you think it would be a good idea to add to your thread title " - now with English subtitles"?
     
  11. Sasha

    Sasha Fine, thank you

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    Just watched the video in English - well worth a look.

    Big thanks to the patients who were interviewed, and to Drs Fluge and Mella and their team! :thumbsup:

    One key thing that they said was that they believe that the disease is reversible and that patients can go back to normal. Naviaux and Ron Davis have said this too, I think.
     
    Aroa, Joh, slysaint and 11 others like this.
  12. alex3619

    alex3619 Senior Member

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    :)
     
  13. Tuha

    Tuha Senior Member

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    Do we know what they next plans are? What do they want to study? It seems that they dont struggle with money for their research.
     
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  14. A.B.

    A.B. Senior Member

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    I suspect they will decide what do next after seeing the results of the RituxMe trial and its substudies.
     
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  15. Tuha

    Tuha Senior Member

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    I think they will have the results of the Rituximab study in summer 2018. I hope that they will expand their studies regarding the last metabolic findings already now - it would be pity to wait till summer 2018.
     
    L'engle likes this.
  16. A.B.

    A.B. Senior Member

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    Estimated Primary Completion Date: September 2017 (Final data collection date for primary outcome measure)

    https://clinicaltrials.gov/ct2/show/NCT02229942
     
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  17. Tuha

    Tuha Senior Member

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    ah, sorry I mixed up the year. So this wouldnt be that far away.
     
  18. AndyPR

    AndyPR RIP PR :'(

    But how long a delay is there normally for publication to happen?

    Just checked and for their recent study, the results write up was received by the publishing journal 5th July 2016, accepted (I assume this mean peer review process completed) 15th November 2016, finally published 22nd December 2016 - so an almost 6 month delay.

    So if the same happens then we are looking at 2018 to see the results, and saying summer 2018 probably keeps our expectations reasonably in check. :)
     
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  19. mariovitali

    mariovitali Senior Member

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  20. Tuha

    Tuha Senior Member

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    Here is a comment from a norwegian on facebook:
    "A lactate study is coming from one of the researchers, Katarina Lien. Soon, we hope."
     
    Joh, Jan, rosie26 and 12 others like this.

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