Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Stanford Daily: Tackling Chronic Fatigue Syndrome.

Discussion in 'General ME/CFS News' started by Kati, Jan 5, 2016.

  1. Kati

    Kati Patient in training

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    http://www.stanforddaily.com/2016/01/05/tackling-chronic-fatigue-syndrome/

    This is a very sympathetic article with 2 cases of severe ME including Whitney and another young man cared for by his parents.

    Dr Davis talks about difficulty in getiing NIH funding. Here is an exerpt:

    In March 2015, Davis submitted two grant proposals to the National Institute of Health (NIH) for funding to study patients severely affected by ME/CFS. Neither application was able to move past the NIH’s pre-proposal stage.

    “They weren’t even sent out for review,” Davis said. “One of [the responses said we] should look at severe patients, but that’s what the grant was all about.”

    Another response criticized the lack of data points in Davis’ proposal.

    “They said we’re not making any neurological measurements like NMR scanning,” Davis said. “This is a proposal about severe patients that are bedridden. You can’t take them into the hospital and do a scan.”

    The difficulties Davis and other world-renowned scientists have faced in obtaining funding for research initiatives on ME/CS reflect the overall lack of NIH-supported funding for the disease



    Share widely.
     
    Last edited: Jan 5, 2016
  2. shannah

    shannah Senior Member

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    Thanks @Kati for posting.

    Another interesting excerpt:

    “We’ve seen some evidence of mitochondrial dysfunction in the metabolites,” Davis said. “You don’t see that in mitochondrial diseases, so it’s probably not a genetic effect. No one has seen this kind of defect before, but it’s something we have to continue to explore. It would explain everything [including the brain function and fatigue].”
     
  3. Sasha

    Sasha Fine, thank you

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    Just tagging @Simon.
     
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  4. Sasha

    Sasha Fine, thank you

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    Just read it - very good article.
     
    Never Give Up, Dolphin and Kati like this.
  5. jimells

    jimells Senior Member

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    northern Maine
    Top researchers still can't get funding but we are supposed to be all pals now with NIH, based on Director Collins' say so.

    I don't think so.
     
    *GG* and Webdog like this.
  6. Gingergrrl

    Gingergrrl Senior Member

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    Excellent article. Was just curious, in the article, it said that Whitney could not tolerate looking at a logo that said "North Face" (which of course is random and it could be any logo) but is this common? In general do PWME struggle to read a logo on clothing? My daughter has a shirt where all the letters are backwards but I have no issue reading it. Am still trying to assess if I have ME/CFS or something else and wondering if others related to that issue or if it was random to Whitney's case?

    ETA: I have had severe reactions to smells that no one else can smell so I relate in that sense.
     
  7. Forbin

    Forbin Senior Member

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    When my illness was at its most severe, I had difficulty looking at certain ads in magazines because they were using deliberately "attention grabbing" color combinations for large headlines, etc.. The combination that I seem to recall as most annoying was bright metallic red on a silver background. The effect was somewhat like the annoyance I would get from wearing polarized glasses and I think it has to do with a difficulty in "fusing" the images from the right and left eyes. The merging of images from the right and left eyes requires "suppressing" parts of both images. Some color combinations are so striking that they may actually make it hard to suppress them in the manor necessary to combine the images into a stereo view. This may be more noticeable when nervous system is exhausted. A healthy person who has been without sleep for a day or two might start to have the same kind of problem.

    ETA: I just noticed that the article says that Whitney Davis would "try to interpret" the logo and that would exhaust him, which doesn't really sound like what I described above.
     
    Last edited: Jan 5, 2016
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  8. helen1

    helen1 Senior Member

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    Excellent article. I'm interested in the mitochondrial angle Dr Davis is looking at. It's not new of course, it's been around for a while and Dr Myhill focuses on that if I recall. Just really curious as to what they're finding is dysfunctional with the mitos exactly. Anybody heard any details?
     
  9. GreyOwl

    GreyOwl Dx: strong belief system, avoidance, hypervigilant

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    I've been thinking about mito DNA deletions - these are normal in ageing, but also after drugs, toxins and viruses. Random deletions of mtDNA SNPs could cause dysfunction. Just wondering whether anyone has looked at this since 1995?
     
  10. Gingergrrl

    Gingergrrl Senior Member

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    Thank you @Forbin and I was just curious.
     
  11. Effi

    Effi Senior Member

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    Gingergrrl likes this.
  12. Gingergrrl

    Gingergrrl Senior Member

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    Thanks @Effi and interesting thread. I want to respond but don't want to take this thread off track. Will just briefly say that I also do not tolerate flashing or moving lights but have no problem with logos or things that are not moving. Was just curious, thanks again!
     
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  13. Yogi

    Yogi Senior Member

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    What a great article and I think this is the main local paper for Stanford where all the big tech co's - Google, Paypal, Tesla etc reside as well as all the venture capitalists. Lots of wealthy philanthropists to fund research!!!.

    I cannot manage to keep up with all the reading now. This is the first time there is just so much happening now. I still have to read the recent Tuller articles, Coyne's blog and Andrew Gelman. Spoilt for choice. I feel like a kid outside a candy shop window!!! However this is good that I am struggling to read all the positive news now coming out. Never ever thought this would ever happen.

    I have noticed the comments are getting less on these articles as we are all probably struggling to keep up with the news. However it would be good if anyone has any intelligent comments to make as currently there is only 1 comment asking about how to donate and a response from Whitney's mother. Definitely want these authors to continue to cover the illness in future.
     

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