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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NIAID Joins Trans-NIH Effort to Develop Centers for ME/CFS Research

Discussion in 'General ME/CFS News' started by Kati, Feb 15, 2017.

  1. Kati

    Kati Patient in training

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    https://www.niaid.nih.gov/grants-contracts/funding-news-february-15-2017#niaid


    The following was part of a NIH newsletter called NIAID Funding News February 2017

     
    Gemini, Knockknock, jstefl and 18 others like this.
  2. Knockknock

    Knockknock

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    Jaaaa this sound really AMAZING!!!
    Especially coming from the NIH itself!!!
    Any thoughts??????
     
  3. Sean

    Sean Senior Member

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    :)
     
    Knockknock likes this.
  4. Kati

    Kati Patient in training

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    What strikes me is that they do not want, at this point in time, clinical trials as they define it.
     
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  5. dangermouse

    dangermouse Senior Member

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    This sounds interesting & dare I begin to get my hopes up?
     
    Knockknock likes this.
  6. AndyPR

    AndyPR Senior Member

  7. Knockknock

    Knockknock

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    Keep emotions in control, lol
    They said in 2015 finally that they were neglected to ME/CFS, they recognized as a real cronic illness they said that the action was in the immune system, they said they will use all their fire power to crack down this disease.
    Now almost 2 years later they have done nothing!!!
    Very little, always putting objections, yes they double up funding but 10-15 million is not even close to crack down this disease thats not even close to using all their fire power.

    Use all their fire power is put the urgency that they promised and that this illness deserve, get together all the famous virologist And ME/CFS good doctors and researchers and fund them with no objections to find out everything about this disease from etiology to mechanism and disfuntions testing treatment.
    After the publication of francis callins from NIH IN 2015, most of the NIH close friends in canada, in Uk still playing the game of not recognizing the illness for what its.
    This is a bad sign.
     
    Webdog likes this.
  8. Kati

    Kati Patient in training

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    As I said on top, this is part of a NIAID newsletter shared to potentially tens of thousands of subscribers, many of whom are in the scientific community, including universities, researchers, etc. This was not aimed at patients who already knew this information.

    I think we need to be grateful that we are getting this kind of exposure in order to attract new researchers in the field. This is exactly what is needed.

    Of course, the progress is slow. We have been fighting stigma and contempt for decades now. But this step may, along with the various efforts from our researchers, patient campaigns, and films such as Forgotten Plague and @JenB 's Unrest will all contribute in hopefully a breakthrough and a much needed 'aha' moment at NIH.
     
    Last edited: Feb 16, 2017
    viggster, A.B., Solstice and 10 others like this.
  9. Knockknock

    Knockknock

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    Agree!!!
    100%
    Also Plague by Dr Judy Mikovits,
    We all
    Know what happened to her but many doctors and researchers still belive that her findings are not far from the truth.
    Look what Dr Jaime Deckoff jones recently published.
    To me seem very credible.

    http://www.x-rx.net/blog/
     
  10. Knockknock

    Knockknock

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    The more activity and expousure we have the more awareness.
    We are not even close but defenetly in a much better position than decades ago.
    I didnt mean to down play or discourage you on your post.
    I you felt that way i apologize.
    Thank you for sharing that with us.
     
  11. Kati

    Kati Patient in training

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    Look, there is no need to bring back Dr Mikovits in this current thread. The XMRV paper has been discredited. dr D-J is probably JM's closest friend. She has not publshed a paper about her theories, and a mere blog post is simply not how researchers discuss their views. The language of science is shared via peer-reviewed papers.
     
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  12. duncan

    duncan Senior Member

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    And Lord knows there is never any double speak in that language, and peer-reviewed papers never indulge in closed loop cronyistic inbreeding. Mere blogs and forums and such - anyone with any science pedigree knows to shun them. ;)
     
    geraldt52 and Knockknock like this.
  13. Knockknock

    Knockknock

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    I have notice Lot of other members of the forum have mention Dr D-J in some other threats, i though will be interesting to share that, but i can see many of the people in PR dont like comments that contemplate the idea that Me/cfs it could has a retroviral or infectious etiology.
    Even though is been sorrounding Me/cfs from the very bigging.
    I know they all have been discredited like mikovits, but was not only her, also silverman,( or not replicated) like Dr Defreitas.

    People go right away to challenge your post.

    Going back to the subgect,
    It will be great if NIH come thru with all this published.
     
  14. Knockknock

    Knockknock

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    Lol,
     
  15. Knockknock

    Knockknock

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    I Was laying in bed last night and my wife asked me what are you doing so much on the phone ?? My answer was quick, I became a member of this amazing forum( PR) people exchange opinions, personal experiances, treatments that have been effective for them and others ideas etc...
    she quickly said let me see and grabed my phone?
    I wasnt sure if she was been jelous or what??
    The first question was why is this member telling you not to mentioned Dr Mikovits? She is good person that have dedicated her life to research, with extensive back ground, cancer, hiv, viroligy, etc, she may of been wrong about XMRV, ( many here believe she is not all that wrong, it may not be XMRV, but posible an other related retrovirus) but even if she was wrong about, that doesnt make her a bad person, she still fighthing for autism, cfs etc..also Dr Jaime Deckoff Jones is a surgeon a Doctor with degree's from diferent university's including HARVARD,
    To add more, her and her daughther have ME/CFS, that alone with the fact that she is a doctor!!

    I figured !!! who it could be more trust worthy& credible than a Doctor like Jaime DeckOff Jones with her background and her personal experiance caring and treating for her and her daughthers CFS all this years, adding that they have managed to keep it mild and have had a lots of improvements and success on her treatments including the used of NARTS.

    Them my wife askme what is wrong with you taking about any of them or if they are friends??

    I really couldnt answere her.
    She said to me, we all know the very little funding and interest that our Goverments have had for CFS all this years, most of the clues and the stuff that we know it is thanks to the pernonal experiance of all this doctors treating patients.
    I couldnt answere her question, i dont understand either, she just droped the phone looked at me in a wird way and said "ok keep doing what you are Doing "you and your forums.
    I stayed like this
    I sleep like this
    I waked up like this
     
    Last edited: Feb 17, 2017
    duncan likes this.

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