The Power and Pitfalls of Omics: George Davey Smith’s storming talk at ME/CFS conference
Read about the talk that stole the show at a recent ME/CFS conference in Simon McGrath's two-part blog.
Discuss the article on the Forums.

Update: 2 video clips with subtitles: Fluge interviewed+new study

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

  1. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    @Jennifer J how do you know about caviar and baguette? That`s one of my favourites :D
     
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  2. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    My guess is that they are already working on the next metabolomics-study, they have a dedicated team remember :)
     
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  3. AndyPR

    AndyPR I'm a DAD, I Donate, Advocate and Demonstrate

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    Another video of Norwegian TV coverage has been posted, this one needs subtitles though, can a Norwegian speaking member of PR help with that?

     
  4. deleder2k

    deleder2k Senior Member

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    I'll update this thread when subtitles is out. I'm afraid I can't do the job, but I am sure someone else can. Perhaps there's a nice Swede here that will accept the challenge.
     
  5. mango

    mango Senior Member

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    English subtitles have been submitted now. Seems like they might have to be approved (by whom?) before they are published? I'm not sure how it works?

    ETA: Here's how it works:
    https://support.google.com/youtube/answer/6054623?hl=en

    ETA again: Someone had already written a full translation, so I only fixed some small mistakes and added a few bits here and there. And clicked "approve". So all credit should go to them, whoever they are :)

    ETA again: I've asked the Swedish translation team to help out, fingers crossed! :)
     
    Last edited: Jan 10, 2017
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  6. perrier

    perrier Senior Member

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    Someone please help out. The scientists said the body is not translating sugar into energy, and that the patients have a valve that allows lactic acid production.

    Now how does Rituximab address this?

    Or are there other solutions? Other medications considered?

    And what about all the other horrid symptoms: low NK cells, endocrine problems, pots,etc etc etc
     
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  7. deleder2k

    deleder2k Senior Member

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    We're live. If you understand any language at all, except for Swedish, Norwegian and English (which is not needed), please help out in translating it if you have the required mental capacity to do so.


    Thanks for the help Mango!
     
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  8. aimossy

    aimossy Senior Member

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    So excellent thank you so much for subtitles! Great peice. I think Oystein Fluge nailed that interview in the studio.
     
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  9. Sasha

    Sasha Fine, thank you

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    Wow, that poor guy Bjonar - he's like a Norwegian Whitney. This disease is such a life-wrecker.

    Very positive interview. Thanks to the translators! Thanks, @mango!
     
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  10. Kalliope

    Kalliope Senior Member

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    I particularly liked him emphasising the importance for him as a researcher that patients recognise and are able to relate to their research findings based on their own experiences as sufferers.
     
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  11. deleder2k

    deleder2k Senior Member

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    Is it somewhat tragicomic that he has to say that it is crucial that the patients are able to recognize and relate to the research. For every other disease on the planet I think that is given - but not in CFS/ME. I simply cannot understand psychobabblers. "Hey, the patients points to a specific physical problem, but why listen to them at all? Why don't we just make something else up that have no basis in reality?? It sounds more fun!!"
     
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  12. Kalliope

    Kalliope Senior Member

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    Bjørnar was one of two severe ME-patients featured in the Norwegian documentary Sykt Mørkt/Perversely dark (2014). It is a wonderful and heartbreaking film which took six years to make. It is a pity the version with English subtitles is so expensive (50 USD!), but here is at least the trailer (with subtitles) if anyone wants to see.

    I am so grateful for documentaries like this and Voices from the Shadows which offer a glimpse to a reality few people (including health care workers) know anything about nor otherwise have access to.

    For those who don't need subtitles, the documentary is still available for streaming (no charge) here.
     
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  13. Joh

    Joh Senior Member

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    Thanks for translating, great videos! :thumbsup: I´m currently translating the second clip into German, but it`ll take a few days.

    Thanks @Kalliope,

    Didn´t know about this Norwegian docu, the trailer is really touching. Would love to watch the whole movie with subtitles (but not enough to spend 50 USD, I have to admit).

    It´s interesting to learn from the videos, that the psychobabblers are so strong in Norway, too. From what I read before (funding, research, the official apology to all ME-patients, a hospital for ME-patients?) I always assumed that ME was an accepted illness in Norway. :(
     
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  14. slysaint

    slysaint Senior Member

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    Last edited: Jan 12, 2017
  15. Joh

    Joh Senior Member

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    Came across this video from 2013 about Fluge/Rituximab:

    It´s in Norwegian with German subtitels, but at 2.29 Dr. Kogelnik is interviewed and says in English that CFS is a serious neuro-immune desease and if he had to choose between CFS and cancer he´d probably choose cancer.

    I was surprised because I haven´t heard this statement before (and always found he was rather super-careful in his interviews).
     
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  16. Sasha

    Sasha Fine, thank you

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    Dr Nancy Klimas has previously said that if she had the choice, she'd rather have HIV (or did she say AIDS?) than CFS, in the present day, because HIV/AIDS can be treated.
     
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  17. Joh

    Joh Senior Member

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    Yes, but Nancy Klimas statement is kind of famous. This is why I was so surprised that I´ve never heard of this similar one.

     
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  18. Joh

    Joh Senior Member

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    Added German subtitles to the second video, but they have to be approved (like @mango said before). Could anybody who is Youtube-savy do that? :nerd: I'm afraid it'll otherwise take ages until a lame health video about a non-existing illness will be approved by some kid on youtube. :p
     
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  19. mango

    mango Senior Member

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    My German is very weak, but I had a quick look and approved your subtitles anyway :)
     
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  20. Joh

    Joh Senior Member

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    Jättebra, tack så mycket, @mango! :thumbsup: It worked! (On a personal note: Developed ME while studying for a year in Uppsala. Had the best time until then, but had to leave when I became so ill. Still love Sweden and Scandinavia.)

    Thanks @deleder2k for the great idea, to ask for more subtitles. Didn't know, that it is possible to add subtitles to videos other people uploaded. Great as some light advocacy work, that can be done from bed. :)
     
    Last edited: Jan 13, 2017
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