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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OMF Severely Ill Big Data Collection Completed

Discussion in 'Latest ME/CFS Research' started by Never Give Up, Aug 4, 2016.

  1. Never Give Up

    Never Give Up Collecting improvements, until there's a cure.

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    Woohoooo! Now on to the analysis!

    OMF is excited to announce that sample collection has been COMPLETED for the ME/CFS Severely Ill Big Data Study. The completion of sample collection means we now have the most multi-faceted and down-reaching data ever gathered to analyze and test in our search for a cure. We are also tremendously grateful to the patients that gave of themselves to make a big personal sacrifice for the pursuit of groundbreaking science.


    [​IMG]
    ME/CFS Severely ill Big Data Study
    The Open Medicine Foundation - Nonprofit fundraising and support for a cure for Neuro-Immune Disease, Chronic Fatigue Syndrome, ME, Lyme Disease, Fibromyalgia and engages patients in research.
    OPENMEDICINEFOUNDATION.ORG
     
    ryan31337, MEMum, Cheesus and 36 others like this.
  2. JaimeS

    JaimeS Senior Member

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    Phase II appears to be to collect similar information from moderate and mild patients to ensure that they suffer from the same abnormalities. Exciting!

    -J
     
    Dechi, MEMum, Ben H and 18 others like this.
  3. alex3619

    alex3619 Senior Member

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    This is a big milestone. Its like when scientists announced they mapped the human genome. That was step one. After that came full genomics, proteomics, metabalomics and so on. Its a revolution that is still ongoing. I think we are in for an interesting ride.
     
  4. Sasha

    Sasha Fine, thank you

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    CAN'T WAIT for the results!

    You know where the "donate" button is!
     
    MEMum, Ben H, Comet and 10 others like this.
  5. A.B.

    A.B. Senior Member

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    How long will the data analysis take? 2-3 months? A year?
     
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  6. Gingergrrl

    Gingergrrl Senior Member

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    Great question and I am curious, too!
     
  7. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    This just amazing, and a gigantic leap for our tired legs.

    Has the same amount of data been collected for other immunological diseases, I wonder

    Will OMF make this data available for other researchers?
     
  8. Gijs

    Gijs Senior Member

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    These results will be representative for a very select group of CFS patiënts (20%) certainly not for the most of them and all those 'millions and millions' of American fatique patiënts. But nevertheless very interesting.
     
  9. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    Oh Gijs :p Always positive!

    This is why they`re doing phase 2 on mild and moderate patients:D!
     
    MEMum, Riley, NL93 and 11 others like this.
  10. Strawberry

    Strawberry Senior Member

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    YAY! You just made my day. And my Friday. So is that where my blood I donated to OMI will go?

    I wonder if I will ever know.
     
    JaimeS, Marky90, Comet and 1 other person like this.
  11. Comet

    Comet I'm Not Imaginary

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    I seem to remember reading that this was their intention. But, as usual, I have no idea where.
     
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  12. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    Yes, at least they said they would post their major findings as they occur. But the raw data would be extremely valuable to have available, cause there is a lot of researchers just conducting research that has already been.. researched
     
  13. Comet

    Comet I'm Not Imaginary

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    Maybe @Ben Howell would know what sort of data sharing is planned?
     
    MEMum, Ben H and Marky90 like this.
  14. Comet

    Comet I'm Not Imaginary

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    MEMum, Snow Leopard, Ben H and 4 others like this.
  15. *GG*

    *GG* Senior Member

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    Gingergrrl likes this.
  16. Gingergrrl

    Gingergrrl Senior Member

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    Hmmm... stalking across threads... this is a new technique.... but it was effective and I will vote right now LOL. And for the topic at hand, am very glad that the data will be shared and this really puts the "Open" in OMF!
     
    MEMum and *GG* like this.
  17. Ben H

    Ben H OMF Correspondent

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    No worries @Comet ! Thanks for posting the excerpt :thumbsup:

    Its been part of the vision from the onset, the data being in the public domain so that other investigators have access.

    There are no ego's here (despite the RIDONKULUS talent) , just the determination to get an understanding and treatment(s) as quickly as possible.

    They are making fantastic progress! If you havn't already I suggest signing up to the newsletter here to be kept up to date (this was recently reported in the newsletter):

    http://www.openmedicinefoundation.org/newsletter-sign-up/

    (Many of you im sure are already!).

    For those that missed Ron Davis's bday thread, we managed to raise $16000 in honor of him. Thats not including the regular monthly donations that OMF receive!

    When the current testing of the severely ill patient study is done and the results are analyzed, then we will know what biomarkers to test for in moderately ill patients. @Gijs (hopefully that is reassuring!).

    Its all going on :)

    B
     
    Last edited: Aug 6, 2016
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  18. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    That is undoubtedly the right approach:fire:
     
    MEMum, Gingergrrl and Ben H like this.
  19. Snow Leopard

    Snow Leopard Hibernating

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    Looking forward to seeing the results.
     
    MEMum, justy, Kati and 4 others like this.
  20. K22

    K22

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    The OMF believe that the severe have the strongest signals , not a separate illness. I am severe and it feels the same as a flare up when mild - moderate just 10 xs or much more worse impact so I think there is relevance to the other 75%, especially regarding the depth and breadth of the study. Ofcourse factors such as level of incapacitation might affect some things.

    If there are results of many magnitude from normal this will provide striking "news" and get ME taken more seriously which will benefit all. If we go the other way round and do cognitive testing for example in the mildly Ill we just get reports of some difficulty with the speed of processing information, which doesn't move mountains.

    I agree, I don't think it Will have much relevance for the many more living with chronic fatigue but they are far less my concern than those surviving with chronic illness.

    From a severe ME perspective Thank goodness for OMF severe ME research, at last something for us.
     
    MEMum, justy, Marky90 and 12 others like this.

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