New Atmosphere, New Vision: Gibson and Whittemore Kick Off Invest in ME Conference 2016
Mark Berry reports on Dr. Gibson's introduction and Dr. Whittemore's keynote speech, at the 11th Invest in ME International ME Conference in London.
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Ron Davis featured in "nature" journal of science article

Discussion in 'General ME/CFS News' started by Old Bones, Mar 28, 2017.

  1. Old Bones

    Old Bones Senior Member

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    "Biological underpinnings of chronic fatigue syndrome begin to emerge

    Before his 33-year-old son became bedridden with chronic fatigue syndrome, biochemist Ronald Davis created technologies to analyse genes and proteins faster, better and more cheaply. Now he aims his inventions at a different target: the elusive inner workings of his son’s malady."

    "Davis’s findings, although preliminary, are helping to propel research on chronic fatigue syndrome, also called myalgic encephalomyelitis (ME/CFS), into the scientific mainstream. Physicians used to dismiss the disease as psychosomatic, but studies now suggest that it involves problems in the chemical reactions, or pathways, within cells. “We now have a great deal of evidence to support that this is not only real, but a complex set of disorders,” says Ian Lipkin, . . .

    A report released in February 2015 by the US Institute of Medicine (IOM) has helped to drive the shift. After reviewing more than 9,000 studies, an expert panel concluded that chronic fatigue syndrome was an under-studied physiological illness. “They essentially said, ‘Shame on you for not investigating this,’” says Zaher Nahle, vice-president of scientific programmes at the Solve ME/CFS Initiative . . . "

    Read the full article here:


    http://www.nature.com/news/biologic...onic-fatigue-syndrome-begin-to-emerge-1.21721
     
    Last edited: Mar 28, 2017
  2. A.B.

    A.B. Senior Member

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    Beautiful. The narrative in the media has really changed in the last years.

    Hopefully that it's published in Nature means that some very good scientists will read it and become interested.
     
    Hilary, TrixieStix, Shoshana and 36 others like this.
  3. AndyPR

    AndyPR Senior Member

    New study coming out from CII. :thumbsup:
     
    lafarfelue, Shoshana, suseq and 33 others like this.
  4. mango

    mango Senior Member

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    Ooh, brilliant! :):thumbsup: Reading this gave me full body goosebumps! :nerd:

    Here is Nature's tweet ("like", reply, retweet!):


    And Nature's Facebook post ("like", comment, share!):
    https://www.facebook.com/NatureNews/posts/1430281343709037

    Please remember to add the link to OMF's "Donate now" page, when you share this article or post comments :)
    http://www.openmedicinefoundation.org/donate-to-the-end-mecfs-project/
     
    Last edited: Mar 28, 2017
    TrixieStix, Shoshana, suseq and 22 others like this.
  5. A.B.

    A.B. Senior Member

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    This was just tweeted to 1.6 million followers on Twitter. :)
     
    TrixieStix, Shoshana, suseq and 34 others like this.
  6. adreno

    adreno PR activist

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    More good stuff. It just keeps coming!
     
    Shoshana, suseq, Pendergast and 14 others like this.
  7. Esther12

    Esther12 Senior Member

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    A good sign. I remember thinking that Nature has been particularly bad for us in the past.
     
  8. Sidereal

    Sidereal Senior Member

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    Can't wait for the Lipkin paper to come out.
     
    Tunguska, Shoshana, Forbin and 15 others like this.
  9. AndyPR

    AndyPR Senior Member

    And CII's and Solve ME/CFS's perhaps as well if there is space? http://bit.ly/DonateToDrLipkin and https://donate.solvecfs.org/
     
    Shoshana, Forbin, Pendergast and 10 others like this.
  10. Old Bones

    Old Bones Senior Member

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    @A.B. You're so right about the narrative having changed.

    I first started watching for on-line news about ME a year and a half ago. I had just attended a health-focused "Meet-up". A motivational speaker described how she cured her FM with a positive attitude, and suggested I do the same. While challenging her, I spelled out "myalgic encephalomyelitis" on a scrap of paper, and suggested she do an on-line search. My timing couldn't have been worse.

    The next morning I did my own search, and was horrified to find pages of articles re-posting the claim that ME patients are simply afraid of exercise.

    These days, it's more likely that accurate articles are being "picked up" by various on-line news sites. About time! Now, if only we'd start seeing them regularly without looking. This doesn't appear to be happening -- at least not yet in Canada.
     
    Shoshana, Pendergast, Aroa and 9 others like this.
  11. mango

    mango Senior Member

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    "Like", reply, retweet! :)

     
  12. Molly98

    Molly98 Senior Member

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    this is great news, good article.
    I wish it all had some influence on changing the narrative in the UK though.
    Perhaps it will, eventually but we have MUS pulling us in the opposite direction.

    But this is great.
     
  13. arewenearlythereyet

    arewenearlythereyet Senior Member

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    New scientist and nature within months of each other. Who needs the lancet !
     
  14. mango

    mango Senior Member

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    Pendergast and AndyPR like this.
  15. mango

    mango Senior Member

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  16. mango

    mango Senior Member

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  17. A.B.

    A.B. Senior Member

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    I still think that we as community didn't really appreciate the IOM report enough. It made a lot of change possible in my opinion. They said it very clearly: this is not a psychiatric condition, patients have problems tollerating exertion, and it needs to be studied a LOT more. And we could have had the SEID name and definition, which may not be perfect but is still better than CFS, which is what we're stuck with now for the foreseeable future. If there happens to be a push for SEID again (quite possible given the NIH seems to finally get it), please let's accept it this time. It's clearly better than Fukuda CFS.
     
  18. Nickster

    Nickster Senior Member

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    This is interesting data about bacteria. My son who suffers with CFS/ME said that his first symptoms of the this crazy thing started with his gut first (particularly in the lower intestine) and from there he had so many reactions to most everything including life. He described feeling this pain in the intestine where it meets the lower intestine (the elbow of the connection) and it felt like a foreign invader was living in there. Getting the proper test for these invaders would greatly help.
     
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  19. viggster

    viggster Senior Member

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    Amy Maxmen is a former mentee of mine and it's great to see her do good work like this. She recently started working for Nature out of the Bay Area after covering Ebola in West Africa and other daring adventures. She's a good reporter who is now in the front door as more findings emerge. Oh, and Nature is based in London and has a big sway in the UK science community. The sound you hear is the Science Media Centre getting nervous (I hope). ☺
     
  20. caledonia

    caledonia

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    Cincinnati, OH, USA
    No CFS or SEID - a totally new name based on the new biomarker. This is how other similar chronic diseases have gotten traction.
     

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