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Open Medicine Institute continuing ME/CFS Research Pilots with $612,000

Discussion in 'General ME/CFS News' started by Bob, Nov 25, 2013.

  1. Bob

    Bob

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    News from Open Medicine Institute:
    https://www.facebook.com/photo.php?fbid=451562331614860&l=961af87bf7


    Edit

    Here is a new formatted version of the above quote:
    http://www.openmedicinefoundation.org/news-612000-or-mecfs/

    This includes exactly the same info except it (accidentally, I assume) excludes the following section of the study:
    "A gene expression study to examine 30,000 human genes for changes in gene expression patterns correlated with improvement/response to treatment."

    Last edited: Dec 30, 2013
    Sidereal, biophile, cigana and 18 others like this.
  2. August59

    August59 Daughters High School Graduation

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    God Bless the 2 anonymous donors and all the individual donors that came together to bring another $12,000 to the study.

    This is a very broad study and has the potential to produce earth-shaking results or find a definitive direction for further studies and possibly help replicate a past study.

    Thanks to everyone involved in this!!!!
    peggy-sue, SOC, Iquitos and 9 others like this.
  3. Simon

    Simon

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    There are lots of really good things about this, starting with over $0.5 million of donations. Then they focus on changes in genes, metabolites and more with improvement and response to treatment, which increases the odds of real rather than chance differences between groups.

    Then they collective objective data on activity as well as heart rate etc, all collected by patients using new technology. That really is leveraging technology to make the most of patient input. Putting the congnitive test online is another example (all cognitive tests are done on a computer in any case). So they are creating tremedously rich data incorporating biochemical and physiological and congnitive and activity measurements

    I do have a concern is that they seem to have a lot of studies (at least 10) here and I wonder if they will be big enough to produce more than very tentative findings. Certainly 20 patients for gene expression studies is very small - even though it helps that they are trying to correlate the gene expression changes with changes in health status. If ME/CFS is indeed many different illnesses (even CCC definition) then a study of 20 patients won't be able to find much.

    I don't want to sound negative because they are doing so many good things here, but I can't help wondering if it would be better to focus the money on a couple of much larger studies.

    I've reformatted their post to make it easier to read, please shout if you think I've split it up wrong:

    ... Compelling areas include:
    an in-depth study of 20 ME/CFS patients:
    • 1. Whole genome sequencing
    • 2. A virome survey of oral viral flora
    • 3. A gene expression study to examine 30,000 human genes for changes in gene expression patterns correlated with improvement/response to treatment
    Two proteomic/metabolomic pilot studies: [how big?]
    • 4. One looking at over 250,000 protein features per sample. Resulting in a protein profile to compare a baseline ME/CFS patient with responders and non-responders.
    • 5. The second analysis will examine 30,000 smaller molecule profiles representing toxins and metabolites in the same set of samples. This will further our understanding of what a patient’s profile looks like on a molecular level pre and post-treatment.
    Immune studies
    6. Natural killer cells, B-cells, and T-cells will be looked at for functional performance, activation markers when compared between ill and recovered patients

    7 (+)Other Immunology studies will include single cell measurements, acetylation and other cellular parameters
    Breath testing for GI flora gas production with dietary changes to start looking at the effect of the gut microbiota on the disease, recovery and treatment

    Other work
    8 Measurement of mitochondrial and related biochemical pathways
    that play a role in oxidative stress and energy production, adrenal and thyroid pathways that regulate metabolic function along with full panels of pituitary, gonadal, adrenal and other hormones.

    9 Brain/Cognitive Data will be collected using unique on-line programs including reaction time, short-term memory, latency, and additional cognitive assessments. These data will be correlated with clinical and molecular endpoints

    10 Quantified-Self (self measurement) projects will rely on wearable devices logging data of activity, heart rate, sleep patterns, blood pressure, heart rate variability (a measure of stress) and others
    Last edited: Dec 30, 2013
  4. Sparrowhawk

    Sparrowhawk Senior Member

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    Agree, it is a lot to take on, and my impression is that they are not intending to do all of the above just with the money raised, but keep the momentum and raise more, much more, to cover the broader research agenda. That's how I'd approach it, anyway.
    aimossy likes this.
  5. SOC

    SOC Moderator and Senior Member

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    The purpose of pilot studies is usually to get a feel for the lay of the land, so to speak -- to try to figure out which areas of research are most likely to produce results. Larger studies are then planned for the topics that appear to be the most promising based on the pilot studies. Pilot studies are rarely (maybe never) conclusive, but they clear the ground if done correctly, and give support for efforts to raise money for bigger studies.

    Let's hope that's what OMI is trying to do with these pilots.
    Sparrowhawk, peggy-sue and aimossy like this.
  6. caledonia

    caledonia

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    This looks awesome. Does anybody know what definition they're using to pick out the 20 patients?
    peggy-sue and aimossy like this.
  7. Bob

    Bob

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    Here is shorter summary of the project in an email that they recently sent out (it repeats the above info, so there is nothing new here):

    And this is the formatted version of their press release (that I quoted in the opening post) (so there's nothing new here either) (Simon was spot-on with his formatting, and got it exactly right):
    http://www.openmedicinefoundation.org/news-612000-or-mecfs/
    Last edited: Dec 30, 2013
    Simon likes this.
  8. Bob

    Bob

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  9. Bob

    Bob

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    Extract from recent Open Medicine Institute email.

    Current status of OMI-MERIT Projects:

    Neuro Registry & Biobank - Pilot Funded
    Protein Panels - Pilot Funded
    Other Mono & Combo Therapy - Current Crowdfund
    Immunologic Biomarker Exploration - Pilot Funded
    DNA Genetics - Fully Funded
    Mass Spec/ Environmental - Pilot Funded
    Viral Testing - Partial Funded
    Advanced Biomarker Study - Pilot Funded
    Simon likes this.

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