The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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OMF(Open Medicine Foundation) OFFICIAL THREAD inc Q And A!

Discussion in 'Action Alerts and Advocacy' started by Ben H, Jul 12, 2016.

  1. Ben H

    Ben H OMF Correspondent

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    OMF(Open Medicine Foundation) OFFICIAL THREAD inc Q And A!

    Hi all,


    I have recently been in contact with the wonderful OMF, and we have decided to run an official thread, so that we can streamline information directly to you guys here as there is so much interest in the organization and research! I will be acting as a correspondent for them, so any new news and progress will be shared on this thread.


    At the end of the post we will be running a Q and A so that you as patients have an opportunity to raise any questions, concerns, pertaining to what the OMF is doing.


    I would ask that each of you post once with questions, and simply edit that post if you find you have more questions. This is so it will be easier to comprehend. Any other thoughts, post as much as you like!


    Some questions will not be able to be answered just yet and may take time (i.e. specific research results, input needed from Ron who is unbelievably busy with research and looking after Whitney etc), but we endeavor to do our best, and it will be in a ‘rolling format’ with questions and answers being updated regularly. The link to the current FAQ is here:http://www.openmedicinefoundation.org/frequently-asked-questions/


    Relevant information from the research studies, when released, will also be posted here so keep your eyes open!

    Finally, I'd like to thank Linda, Marilyn, Tina, Janet @Rose49 and Ron for their help with this!


    So first off, who is OMF?


    OMF is the Open Medicine Foundation, a 501(c)(3) non-profit organization run by CEO/President Linda Tannenbaum. OMF wants to wipe out chronic, complex diseases and they are starting with one of medicine’s most exciting challenges — ME/CFS.

    OMF began in 2012 as a start-up, with Andreas M. Kogelnik, MD, PhD, fundraising for research lead by Dr. Kogelnik at the Open Medicine Institute. In 2014, OMF took this a big step higher and created the OMF Scientific Advisory Board with Ronald W. Davis, PhD as the Director. Dr. Davis brought together a remarkable team of scientists to lead research to find a diagnostic tool and a cure. (see below)

    When OMF created the OMF End ME/CFS Project with Ronald W. Davis, PhD in 2014, they took the opportunity to focus exclusively on that project as a means of striking hard and deep at one specific disease, using a strategy that could help tackle many other diseases.

    Although they now operate completely independently from the Open Medicine Institute, and fundraise exclusively for the OMF End ME/CFS Project, Andreas Kogelnik, MD,PhD, founder of the Open Medicine Institute, still works closely with them as a member of their Scientific Advisory Board.

    Dr. Davis leads the OMF End ME/CFS Project from his Chronic Fatigue Syndrome Research Center(CFSRCS) with his team at the Stanford Genome Technology Center at, Stanford University and with the OMF Scientific Advisory Board.

    CFSRCS Network Members (CFS Research Center at Stanford) now working on this due to funding from OMF and many giving of their time and expertise include:

    CFS Research Center at Stanford

    Core Research Group
    Laurel Crosby, PhD - expert in multi system integration; director of research CFSRCS
    Gozde Durmus, PhD - expert Magnetic levitation of cells; Postdoc fellow, Stanford
    Rahim Esfandyarpour, PhD - electrical detection of biologics; Research engineer, Stanford
    Youg Li, PhD - expert Bioinformatics; Postdoc fellow, Stanford
    Peidong Shen, PhD - expert DNA assays; Research Associate, Stanford
    Wenzhong Xiao, PhD - expert Bioinformatics and Physical Chemistry; Harvard Medical School
    Mohsen Gorgani, PhD - Expert mitochondrial Biochemistry; Research Associate
    Robert Phair, PhD - Expert Integrative Bioinformatics and Systems Biology; Professor Johns Hopkins
    Fereshteh Jahaniani, PhD - Expert Genetics from sequence and pharmacology; Research Associate (M Snyder), Stanford
    Brian D Piening, PhD - Expert in Human Big Data; Post Doctoral Scholar with M. Snyder, Stanford
    Curt Scharfe, MD, PhD - Expert Human mitochondrial genetics; Professor Yale University
    Nader Pourmand, PhD - Expert nano needle injection into mitochondria; Prof UC Santa Cruz
    Craig Heller, PhD - Expert medical and sports metabolism; Professor of Biological Science, Stanford

    Academic Collaborators
    Mark Davis, PhD - Immunology expert; Professor Immunology, Stanford
    Mike Snyder, PhD - Expert Human Big Data studies. Chair Genetics, Stanford
    Lars Steinmetz, PhD - Expert mitochondrial genetics; Professor Genetics, Stanford
    Hanlee Ji, MD - Expert Big Data technology; Associate Professor Medicine, Stanford
    Robert Naviaux, MD, PhD - Expert mitochondria & metabolomics; Professor UC San Diego
    Jennifer Frankovich Sargent, MD - PANS expert; Clinical Assistant Professor, Stanford
    Catherine Blish, MD - Human natural killer (NK) cells expert; Assistant Professor of Medicine, Stanford
    Stuart Kim, PhD - Expert in Big Data of athletes and aging; Professor Developmental Biology and Genetics, Stanford
    Garry Nolan, PhD - Expert Mass Cytometry & Phosphor flow; Professor Immunology, Stanford
    Daria Mochly-Rosen, PhD - Expert translational medicine; Chemical and Systems Biology, Stanford
    Steve Elledge, PhD - Expert auto antibody and virus detection; Professor Genetics, Harvard Medical School
    John Bell - Expert Bioinformatics; Research Associate (H Ji), Stanford
    Gregory Enns, MD - Expert Human mitochondrial genetics; Professor Pediatrics (Genetics), Stanford
    Jarred Younger, PhD - Expert Pain and Anesthesiology; Professor, University of Alabama

    Doctors that see CFS/ME Patients
    Andreas Kogelnik, MD, PhD - Expert ME/CFS; Director Open Medicine Institute
    Eric Gordon, MD - Expert ME/CFS; Gordon Medical Associates
    Jose Montoya, MD - Expert ME/CFS; Professor Medicine Stanford
    Nancy Klimas, MD - Expert ME/CFS; Director, Institute for Neuro Immune Medicine, Nova Southeastern University



    Biotech Collaborators
    George Schreiner, MD - Expert mitochondrial drugs; President & CSO Cardero Therapeutics
    Sundeep Dugar, PhD - Expert pharmacological Chemistry; Cardero Rx
    Fred Volinsky, MD - Antiviral drug development; CEO Epiphany Biosciences, Inc
    Lisa Paborsky, PhD - Expert mitochondrial drugs; Senior Vice President Mitobridge, Inc.
    John Ryals, PhD - CEO of Metabolon


    With fundraising for this project outside the university system, OMF has the flexibility to direct funds to the very best specialist laboratories for each test, anywhere in the country for any specific biomedical test needed in the project. They are moving at full speed to understand what causes ME/CFS, and to find biomarkers, treatments, and a cure.




    Who is Linda Tannenbaum?


    Linda Tannenbaum is the founder and CEO/President of OMF. As a healthcare professional and parent of a patient, Ms. Tannenbaum founded OMF to give her full-time attention to promoting and raising funds for collaborative medical research into ME/CFS and other chronic complex diseases.


    With years of executive management experience as a clinical laboratory scientist, Ms. Tannenbaum set up and ran a successful independent clinical laboratory for over 21 years. She left the clinical world to set up Open Medicine Foundation.

    Prior to setting up OMF, in fulfilling a 2010 promise to their daughter, who has ME/CFS, Ms. Tannenbaum and her husband started another nonprofit organization: Neuro-Immune Disease Alliance (NIDA). Ms. Tannenbaum also joined the Simmaron Research board, at that time, to seek out and help fund ME/CFS research. Ms. Tannenbaum is also a board member of the Los Angeles Breast Cancer Alliance (LABCA).

    The full OMF foundation board can be found here: http://www.openmedicinefoundation.org/about-us/omf-board/



    OMF scientific advisory board

    Open Medicine Foundation’s (OMF) scientific advisory board Director, Ronald W. Davis, PhD

    Ron Davis’ vision is to discover causes, a molecular diagnosis, and a cure for ME/CFS. OMF’s ME/CFS research team is directed by Ronald W. Davis, PhD, Professor of Biochemistry and Genetics and Director of the Stanford Genome Technology Center. He does cutting edge, innovative, interdisciplinary research and technology development on cancer, immunology, genetics, infectious disease, novel drug development, and nanofabrication of diagnostic instrumentation. In trying to understand ME/CFS, he has read the literature, consulted with leading specialists, attended scientific meetings and thought extensively about how he could apply his expertise to help find a molecular diagnosis, treatment and cure. His expertise and reputation make him a uniquely qualified scientist to take on ME/CFS.
    [​IMG]
    Dr. Davis has brought on a remarkable Scientific Advisory Board with different specialties. This disease affects many systems of the human body, requiring a diversity of knowledge to unlock its secrets. Increasing the diversity of specialties of the researchers will mean that all aspects of this disease are considered in our effort to understand ME/CFS at the molecular level, not just the “symptom” level. Involving well known prestigious university and research institute scientists with a track record of government funding will not only impact ME/CFS directly by generating new knowledge, but will also have a ripple effect in generating awareness and legitimacy for this devastating disease.

    Open Medicine Foundation (OMF) is dedicated to research of the highest quality with openly shared data (in compliance with confidentiality laws). This kind of research opens new opportunity for discovery, since it will utilize state-of-the-art methods and technologies that have never before been applied to ME/CFS, and will employ a collaborative, multi-disciplinary approach, which will investigate all aspects of ME/CFS in a comprehensive manner. Dr. Davis, who already has demonstrated success in this approach, is uniquely positioned to spearhead this attack on ME/CFS at the molecular level.

    To keep this research moving forward, donate today to OMF and Ron Davis’ research and shared vision to find a cure.


    How does OMF Funding work?


    OMF is funded entirely through donations. Since 2012 they have raised over $5 million in funding.

    Due to the nature of the OMF, it is able to fund anyone, in any university/laboratory. The donations that are made have the ability to be extremely flexible, as opposed to donating and researching at one university. This works as a huge advantage in terms of cost, efficiency, and fast tracking results. In short, the money raised goes much further than it usually would.

    They are currently raising funds for the next steps; ie the results of the current in-depth studies will lead us to those next steps. There could be more discovery needed or hopefully, pilot treatment trials.



    What research is OMF doing?

    The research is under the umbrella of ‘The End ME/CFS Project’ http://www.openmedicinefoundation.org/the-end-mecfs-project/

    A list of current studies can be found here: http://www.openmedicinefoundation.org/current-studies/

    More detail can be found at:

    http://www.openmedicinefoundation.org/mecfs-severely-ill-big-data-study/

    http://www.openmedicinefoundation.o...ely-Ill-Big-Data-Study-revised-12-11-2015.pdf

    and http://www.openmedicinefoundation.org/phase-i-list-of-tests/ to see the extraordinary breadth of tests being run!).

    In May 2016, OMF launched an Expanded ME/CFS Metabolomics and Genetics Study led by Dr. Robert Naviaux(at UC San Diego), and Ronald W. Davis(director of OMF’s Scientific Advisory Board), in collaboration with Dr. Eric Gordon, Dr. Paul Cheney, and the Stanford Genome Technology Center. The purpose of this study is to validate earlier findings of a possible diagnostic signature for ME/CFS by measuring metabolites and to evaluate the contribution of genetics to the variation in observed metabolic signatures in this disease.

    More details here: http://www.openmedicinefoundation.org/expanded-mecfs-metabolomics-study/




    Finally....

    The OMF would love for people to sign up to their newsletter (http://www.openmedicinefoundation.org/news-updates/newsletter-sign-up/) become part of their group on Facebook, and would greatly appreciate any donations to continue this groundbreaking research with this world class team! http://www.openmedicinefoundation.org/donate-to-the-end-mecfs-project/

    Thanks guys! Hopefully it is clear how remarkable a project this really is!

    Any questions please ask away (check below to see if they have already been answered).

    CURRENT FAQ link: http://www.openmedicinefoundation.org/frequently-asked-questions/

    Quick DONATION link: http://www.openmedicinefoundation.org/donate-to-the-end-mecfs-project/
     
    Last edited: Jul 13, 2016
  2. snowathlete

    snowathlete

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    Cool, very clear, thanks for taking the time to explain the set-up and I think the Q and A thread is a brilliant idea!

    I am a massive fan of the OMF's work, it is by far the best effort to make progress in the disease there is and I am certain we will benefit from what they discover. Big thanks to everyone involved.
     
    Gingergrrl, actup, justy and 10 others like this.
  3. Ben H

    Ben H OMF Correspondent

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    FAQ link added in post (at bottom). :)
     
    Last edited: Jul 12, 2016
    BurnA likes this.
  4. A.B.

    A.B. Senior Member

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    If everyone donated at least 10% of what they spend on experimenting with various speculative treatments, OMF would be well funded.
     
    picante, Eliza, Chezboo and 16 others like this.
  5. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    Good job @Ben Howell

    Thanks to you and the others for pushing this forward - its important for building our community and movement toward improved quality of life for us all.

    I concur with @A.B. , donations are investments in our health.
     
    Groggy Doggy, MEMum, Jill and 5 others like this.
  6. parabola

    parabola

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    Given the magnitude of data generated, is there anywhere that 'citizen science' could come in and speed things up/lighten the workload? I recall something a few years back (possibly NASA?) Calling on folks to help identity patterns which a computer couldn't recognise for whatever reason.
     
    simeyss, Never Give Up, Comet and 7 others like this.
  7. Ben H

    Ben H OMF Correspondent

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    Great question @parabola

    I will make sure it is sent to the team. Thanks!
     
    simeyss, Comet, MeSci and 3 others like this.
  8. Theodore

    Theodore Senior Member

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    Thank you for this thread Ben.

    I think @Rose49 told it will be possible for the patients to have a metabolic test done with metabolon in the near future, right?
     
  9. Sasha

    Sasha Fine, thank you

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    MEMum and parabola like this.
  10. Webdog

    Webdog Senior Member

    Could you be thinking of Galaxy Zoo?

    There are many other Zooniverse projects as well.

    "The Zooniverse is a collection of web-based citizen science projects that use the efforts of volunteers to help researchers deal with the flood of data that confronts them."
     
  11. parabola

    parabola

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    Yes that first one looks familiar! I love that there's one where you can watch worms lay eggs :lol: but it's not currently active :(
     
    Webdog likes this.
  12. panckage

    panckage Senior Member

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    Thata a great question. I wonder if we could do something like folding@home or the SETI thing with our computers for CFS?
     
    Neunistiva, Ben H and aaron_c like this.
  13. Groggy Doggy

    Groggy Doggy Senior Member

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    Here is my question.

    How many repurposed medicines, with a corresponding hypothesis, has OMF submitted to the NIH to request funding for a study? If the answer is none, then why won't OMF work with my doctor to get the required information? My doctor is ready to go with 3 repurposed medicines. My doctor does not have the facilities to run a trial; but has already spoken to the NIH about studying one of the drugs. ME is a complex issue, and must be studied and analysed in multiple ways.

    Thank you for your time! I know everyone is busy.

    :trophy::heart::star:
     
    Last edited: Jul 14, 2016
  14. Sasha

    Sasha Fine, thank you

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    A bit of an open-ended question, but I'd like to know what we've got to look forward to next! That is, what's the first thing coming down the pike, in terms of papers and talks and whatnot?

    (Actually, I suppose one big thing will be the release of the IiME conference DVD with Dr. Davis's talk on it - soon, surely?)
     
    Last edited: Jul 12, 2016
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  15. Ben H

    Ben H OMF Correspondent

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    Folding@home is exactly the conversation I've had already :) , but it's a great question. When massive amounts of data are involved, computational software and sequencing can be so useful. I'll note it down still!


    B
     
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  16. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    This is awesome.

    I have a question: Is there any interest in doing research on targeting of plasma cells at OMF?
     
    Ben H likes this.
  17. Ben H

    Ben H OMF Correspondent

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    Hey @Marky90

    Here is the list of testing so far, well the majority:

    http://www.openmedicinefoundation.org/phase-i-list-of-tests/


    Was there anything specific when you mention 'targeting plasma cells'? I'm not sure I understand fully.

    Thanks!


    B
     
  18. Ben H

    Ben H OMF Correspondent

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    Hi @Groggy Doggy

    Do you mean OMF instead of OMI? They are separate organisation so just want to check.

    Thanks

    B
     
  19. Groggy Doggy

    Groggy Doggy Senior Member

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    OMF, Ron Davis.
     
  20. Sushi

    Sushi Senior Member Albuquerque

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    Thanks so much Ben--this is great.
    I have a couple of comments:
    If we simply edit the post with our questions, how would anyone know? It won't pop back to the top of new posts, and, if I understand correctly, it won't trigger a watched thread alert. This is likely to be a long thread and members won't be able to keep going back and looking for edited posts.

    Jarred Younger isn't a clinician--he doesn't see patients. I think he is looking for a clinician to liaise with but, as far as I know, it hasn't happened yet. He does have research projects that patients can participate in though.
     

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