The power and pitfalls of omics part 2: epigenomics, transcriptomics and ME/CFS
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Article about new potential treatment by Victoria Bohne, in Norwegian

Discussion in 'General ME/CFS News' started by mango, May 28, 2016.

  1. mango

    mango Senior Member

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    Ut av mørket med ny medisin
    ME-sjuke Eirik Aksnes har den siste tida hatt ei oppsiktsvekkjande betring, takka vere ei heilt ny behandling som blir utvikla frå Askøy.

    http://www.kvinnheringen.no/me/medisin-og-helse/nyhende/ut-av-morket-med-ny-medisin/f/5-27-24661

    Google translation:
     
    barbc56, Countrygirl, Apple and 9 others like this.
  2. mango

    mango Senior Member

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  3. daisybell

    daisybell Senior Member

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    How intriguing!
     
  4. A.B.

    A.B. Senior Member

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    Seems a little fishy in more than one way.

    "We have an amazing treatment but we can't tell you anything about it except that it cures all symptoms in severely affected patients. Oh and by the way we tested this by privately approaching patients."

    Reads more like something one would write to attract the attention of investors.
     
    panckage, barbc56, Ben H and 9 others like this.
  5. BurnA

    BurnA Senior Member

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    Until it's proven scientifically its pointless.

    I wish they wouldn't write this stuff until they at least published some sort of proper study.

    Until they do, I'll be treating it as garbage along with every other anecdote I hear.
     
    actup, barbc56, Valentijn and 9 others like this.
  6. NL93

    NL93 Senior Member

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    Now i really really want to know more :meh:
     
  7. mango

    mango Senior Member

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    She has talked about there being a potential diagnostic biomarker too...
     
  8. MikeJackmin

    MikeJackmin Senior Member

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    actup and Theodore like this.
  9. Snowdrop

    Snowdrop Rebel without a biscuit

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    Just my usual comment of, I don't like secrecy--there's something not right if you can't be transparent about what you're up to when it's an issue of public importance. Sorry but it reads like a money making opportunity.
     
  10. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    Yeah it`s pretty fishy to claim that you have solved disease X, without a shred of evidence. Move along.
     
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  11. Snowdrop

    Snowdrop Rebel without a biscuit

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    It says Eirik received his fist dose last summer (that would be summer 2015?)
    So he was sick for some time before that. It looks as though he was sick for some time in 2014--Article here: http://www.kvinnheringen.no/nyhende/ei-mors-kamp/s/1-1245635-7690878 (sorry don't know how to translate)

    You can google Eirik Aksnes and find him (the jazz musician) here:

    In the program of the jazz festival 2013
    https://www.uis.no/fakulteter-insti...stival-paa-klubb-sting-article77595-8838.html

    If this cure works it would be good to know how and under what circumstances--people certainly have the right to know what they're taking.
    And one needs to continue to take it or the symptoms come back (always good for cash flow).
     
  12. Justin30

    Justin30 Senior Member

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    Why doesnt someone reach out to her and her husband as ask why they have realeased virtually non of the info associated with the drug?

    I heard nothing about trials etc while reading so highly experimental could this have a legal component?

    It could be asked of them if they have been in contact with other large research groups?

    Just playing devils advocate....many that have gotten better have all used different treatments we are all different.

    I am playing devils advocate so no attacks here please:)
     
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  13. Thinktank

    Thinktank Senior Member

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    CaChinggggg.... :moneybag::moneybag::moneybag::moneybag:
    It sounds like they want to make a few (or a lot) of bucks out of it. Why not share your hypothesis?
     
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  14. Theodore

    Theodore Senior Member

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    I don't see any evil in making money if she really found something
     
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  15. valentinelynx

    valentinelynx Senior Member

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    The evil is the years of suffering while waiting for a pharmaceutical company to perform its tests and decide whether or not it wants to spend the money to develop the drug. And if it does, then it needs to apply for approval of the drug in various countries in order to sell it. Could be ten years or more. And the company may decide it's not interested after all. Meanwhile, we are left wondering if there is something out there that could help.
     
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  16. wastwater

    wastwater Senior Member

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    I would release the secret straight away,as I was reading it I thought it was going to be something like just send money and the secret will be revealed or mamas secret special capsules 10 for X amount.
     
    barbc56 likes this.
  17. TiredSam

    TiredSam The wise nematode hibernates

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    That article tells me nothing. It is an advert for something they may or may not be offering in the future.

    Rather short on evidence and details. Just "Bohne's Miracle Cure - Coming Soon!!!"
     
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  18. Snow Leopard

    Snow Leopard Hibernating

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    As with everyone else, I'm skeptical, but would like to hear more!
     
  19. skipskip30

    skipskip30 Senior Member

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    Im calling snake oil until i see some kind of proof
     
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  20. mango

    mango Senior Member

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    Same here!

    Lots of questions have been asked over and over again in some of the Norwegian discussion groups (closed groups, so I'm not able to share more here), and Victoria Bohne has participated in many of the discussions herself. You can join the groups and read for yourself, if you'd like.
     
    barbc56 likes this.

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