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OMF (Open Medicine Foundation) 'A Year in Review'

Discussion in 'General ME/CFS News' started by Ben H, Dec 15, 2016.

  1. Ben H

    Ben H OMF Correspondent

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    Hi guys,

    Lots has happened this year from an ME/CFS perspective, especially that of OMF. Here is a brief overview of all that happened in 2016 for OMF. As always thankyou for all of your support and interest on the forum. If you would like to make an end of year donation, a link is included in the message!



    Over to Linda:

    Before we say good-bye to 2016,
    OMF wants to share with you what we accomplished this year by working together!
    [​IMG]
    [​IMG]
    In 2016, Open Medicine Foundation led the effort to advance medical research for ME/CFS. We brought together thousands of patients, family members, care givers, and advocates. With your unwavering support, OMF has worked tirelessly to advance research on ME/CFS and related chronic, complex diseases to help millions of patients around the world. Together, we have ignited HOPE for patients. Thank you for being a part of this ground-breaking year. We invite you to make 2017 a year to end ME/CFS by donating to research today.

    Donation link:


    https://app.etapestry.com/onlineforms/OMF/EOYPR.html

    We are delighted to share with you the 2016 highlights.

    • [​IMG]
    OMF’s ME/CFS Scientific Advisory Board expanding its expertise welcoming David Bell, MD, ME/CFS expert clinician & Robert Naviaux, MD, PhD, University of California, San Diego, expert in metabolomics and mitochondria.

    • Funding and enabling an expanded validation study of Metabolomics (Naviaux et al. 2016) which now also includes genetics. Status: Completed the sample collection and testing is in progress. Date of completion estimated at June 2017.

      “This work opens a fresh path to both understanding the biology of CFS and, more importantly to patients, a robust, rational way to develop new therapeutics for a disease sorely in need of them.” Robert Naviaux, PhD
    • Working with collaborators in Stanford’s CFS Research Center, Dr. Ron Davis is leading a team in pursuit of a cell assay to use to test drug responses for ME/CFS patients.
    • Under the direction of Wenzhong Xiao and his teams at Harvard University and Stanford University are creating and enhancing a platform for raw data of the Severely ill Big Data Study to be OPEN to all qualified researchers.
    • Scientific Advisory Board members are continuing to meet in small groups to review progress and make recommendations to fast-track results.
      • [​IMG]
        Dr. Ron Davis (presented 3 talks) and CEO Linda Tannenbaum attended the London IiME Conference.
      • Dr. Ron Davis, Dr. David Bell, CEO Linda Tannenbaum, and Marilyn Simon-Gersuk attended the IACFS Conference in Fort Lauderdale, Florida.
      • Dr. Davis and Linda Tannenbaum spoke at the pre-conference about the importance of collaboration. (video available)
      • Dr. Davis presented at the IACFS novel approaches to studying ME/CFS.
      • [​IMG]
        CEO Linda Tannenbaum met with several times with Vicky Whittemore of NIH-NINDS in Washington, DC, London and Fort Lauderdale.
      • [​IMG]
        Dr. Ron Davis had several personal one-on-one phone conversations with Dr. Francis Collins, NIH asking for increased funding.
      • Dr. Davis and OMF supported David Tuller in his effort to reevaluate the PACE trial and the current evidence that shows no benefit in GET or CBT for patients with ME/CFS. Efforts are being made to get the paper retracted.
      • Janet Dafoe helped to build an advocacy effort with other strong advocates, culminating with 55 US Senators signing on a call for action to NIH for increased ME/CFS funding.
      • [​IMG]
      • Achieved Platinum status with GuideStar in recognition for nonprofit transparency, donor accountability.​
      • [​IMG]
      • Winner of the 2016 Top-Rated Award from GreatNonprofits as a result of positive donor reviews.​
      • [​IMG]
        Benefited from a new clever international fundraising and engagement campaign created by our friends in Australia and the UK – Undies on the Outside.
      • OMF launched Friday Stories for patients, caregivers, and parents to share their personal stories for inspiration, awareness and community building.
      • Launched an OMF column on Phoenix Rising with the help of volunteer Ben Howell, OMF Correspondent, to keep the community informed.
      • Partnered with new Social Media Ambassador, Cecilia Ekhem, OMF Sweden Volunteer, to share her poetry and inspirations for Motivational Mondays.



    OpenMedicine Foundation
    Tax ID: 26-4712664

    Our Mission:
    • To support collaborative medical research to find effective treatments and diagnostic markers
    • To communicate, engage and inform the patient community.
    • To help drive & support scientific meetings for continued global collaboration.

    A Word from our CEO/President:

    With tremendous U.S. and International support, we are grateful to all of our study participants, donors, followers, bloggers and social media fans as well as our boards and volunteers that continue to help keep this ground-breaking research moving forward and communication flowing.

    There are many unanswered questions about ME/CFS and related chronic, complex diseases. As supporters, we know how critical these answers are for you. Today you have the opportunity to fund research that can lead to answers. We invite you to help us further research in 2017 by making your end of year donation.

    Thank you for supporting HOPE.

    [​IMG]
    With hope,
    Linda
    Linda Tannenbaum, CEO/President
    Open Medicine Foundation
    www.openmedicinefoundation.org
    Linda@OpenMedicineFoundation.org
    Fast-tracking revolutionary research for ME/CFS
    and related chronic complex diseases

    Donate Now
    to join the Team of HOPE!


    https://app.etapestry.com/onlineforms/OMF/EOYPR.html


    Turn Your Online Shopping Into Donations for Research.

    [​IMG] [​IMG]

    Donate your old car, boat or plane and turn it into $$ to support research.
    (Available in the US only.)


    [​IMG]
    [​IMG]

    We invite the patient community to get involved by sharing with friends and family on Social Media.

    [​IMG] [​IMG]
    Like us on Facebook
    Follow us on Twitter
    Please visit our website at www.openmedicinefoundation.org


    Thanks guys,

    B
     
    Last edited: Dec 15, 2016
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  2. Ben H

    Ben H OMF Correspondent

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  3. AndyPR

    AndyPR Senior Member

    Surely should be CBT?

    But apart from that great to see progress being made. Also wonderful to see your contributions recognised Ben :thumbsup:
     
    marilynbsg, Comet and Ben H like this.
  4. Ben H

    Ben H OMF Correspondent

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    Thanks Andy, Ive amended it! +1 keen eyes 10/10!


    B
     
    Last edited: Dec 15, 2016
    AndyPR likes this.
  5. trishrhymes

    trishrhymes Senior Member

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    Thank you Ben for keeping us up to date, and huge thanks to OMF and all involved. So many hopes for 2017...
     
    Mary, lemonworld, marilynbsg and 2 others like this.
  6. taniaaust1

    taniaaust1 Senior Member

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    that's awesome what you guys are doing there, thanks
     
    Comet and Ben H like this.
  7. greeneagledown

    greeneagledown Senior Member

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    "Working with collaborators in Stanford’s CFS Research Center, Dr. Ron Davis is leading a team in pursuit of a cell assay to use to test drug responses for ME/CFS patients."

    Has this been discussed on PR or anywhere else previously? If so, does someone have a link? If not, does anyone have any info on this?

    @Ben Howell
     
    Ben H likes this.
  8. Ben H

    Ben H OMF Correspondent

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    Hi @greeneagledown

    Yes, this was mentioned in the video from the recent IACFS conference in this thread I believe:

    http://forums.phoenixrising.me/inde...s-me-florida-conference-27-30-oct-2016.47593/

    I believe this is the video where Prof. Davis discusses it:

    https://m.facebook.com/story.php?story_fbid=956825444421877&id=309364692501292&refsrc=http://forums.phoenixrising.me/index.php&_rdr

    (Around 37:00)


    B
     
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  9. actup

    actup Senior Member

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    @Ben Howell, thanks for your frequent updates. My young adult son and I both have me/cfs and I donate to OMF to give him hope. As for persuading family members to donate and using social media to share OMF links that's harder than you may realize.

    I receive ssdi and a small private insurance payment for me/cfs (based on results from a 2 day CPT test). These private insurers constantly scan social media for any reason to stop payments (much cheaper than using surveillence). Can't deal with that hassle so have opted to stay off social media. My son w me/cfs works full time as a poorly paid intern and spends every other moment sleeping and meeting basic needs. Zero social media time and poor social network for both of us.

    My family are caring, good people but believe my son and I are exaggerating our disabilities. I have been asked not to discuss me/cfs with them as a real illness. No me/cfs petition I send ever gets read or signed let alone a donation being made. Sadly my son has learned he gets better care by going w a diagnosis of atypical depression. He was seeing Dr Enlander in Manhattan until he retired but only I know this. I now provide his Valtrex from India while he finds a new md.

    Pwme are often cut off from family's and friend's support for this illness. It's so hard to be effective when we are ill and have been forced into solitude.

    I will continue to donate what I can because if we don't who else will?
     
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  10. marilynbsg

    marilynbsg

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    Thanks for catching this!!
     
    Joh, Ben H and AndyPR like this.
  11. Gamboa

    Gamboa Senior Member

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    Thanks for this review.

    I do have a question regarding the release of results of the Severely Ill Big Data Study. I thought that Dr. Davis was going to release results in the weeks following the IACFSME Conference yet in this review it is mentioning a date in the summer of 2017. Apparently they were completed prior to the IACFSME Conference but were held up by legal issues. Did something change or have I missed something? Has Dr Davis decided against an open release of information for all to access?
     
  12. trishrhymes

    trishrhymes Senior Member

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    I don't know the answers, @Gamboa , but think the data is going to be available for other researchers, not free to all.

    And I think they have finished collecting samples, but it will take some months to do all the scientific testing on them and entering the data into databases.

    There will be many thousands of data points. Then they need to do the complex big data analysis.... I can well imagine this will take many months before it's made public.
     
    Ben H likes this.
  13. BurnA

    BurnA Senior Member

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    There is a recent video where Linda says half the results are in and these will be shared with other researchers. I think they still hadn't got the platform right to do this, and were still working in it. But definitely no change of plan to share with other researchers.
     
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  14. Ben H

    Ben H OMF Correspondent

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    Hi @Gamboa

    This is a reply straight from Linda Tannenbaum (CEO OMF)

    "Good question: We are talking about two different things. One is Open access of the Raw Data of the clinical results which will be up very shortly on our website for researchers only . The other are the actual analyzed results from the medical and clinical testing. A specific data platform is being created to analyze all of this big data."

    Hope that provides clarity :)


    B
     
  15. AndyPR

    AndyPR Senior Member

    This is the video that @BurnA mentions

    Ron has definitely not decided against open release, but I think the confusion is between the raw data and the results of the study. The raw data will be made available to researchers as soon as possible, while the results from the study will take the time indicated.

    ETA: Lol, cross post with @Ben Howell
     
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  16. Ben H

    Ben H OMF Correspondent

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    Exactly Andy!


    B
     
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  17. Ben H

    Ben H OMF Correspondent

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    Hi @actup

    I do appreciate it can be extremely difficult, through first hand experience.

    Social media is just a tool and can work extremely well, but ofcourse in your situation it is not suitable. Thats completely understandable so please do not feel any pressure.

    You are already doing the absolute most fundamental thing-supporting OMF through donations and believing in the research :)


    B
     
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