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OMF Newsletter March 2018

Discussion in 'General ME/CFS News' started by Ben H, Mar 13, 2018.

  1. Ben H

    Ben H OMF Correspondent

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    Hi guys,

    Lots of news in this one.


    [​IMG]
    Linda Tannenbaum Named 2017 Advocate of the Year

    There's an Angel Among Us - Linda Tannenbaum Is Offering Genuine Hope to ME/CFS Patients (Shared from ProHealth)
    ProHealth is proud to name Linda Tannenbaum, founder of Open Medicine Foundation, as ProHealth's 2017 ME/CFS Advocate of the Year.

    ProHealth founder, Rich Carson said, “Linda is a bottomless pit of compassion and a tower of integrity. She's a woman on a mission, with a razor-like focus on finding a cause and a cure.”

    The article shares OMF's background, Linda’s very personal mission, and ends with some hopeful words: “For perhaps the first time ever, ME/CFS patients have a legitimate reason for genuine hope––hope for effective treatments and even hope for a cure.” Read the full article here.


    llMEC13: Ronald W. Davis, PhD Speaking in London

    The annual Invest in ME Research International ME Conference (llMEC) has announced that Ronald W. Davis, PhD will be a speaker at both the Biomedical Research into ME Colloquium on May 30-31, 2018 and Invest in ME Research International ME Conference (IIMEC13) on June 1, 2018 in London.

    OMF will again be hosting a table for Linda Tannenbaum and Ron Davis to greet conference participants. If you will be attending the patient day, please stop by and say hello.

    To see the agenda and register for llMEC13, please click here.
    [​IMG]


    OMF to Attend ME/CFS Conference in Montreal

    OMF is pleased to be attending the upcoming first Canadian Collaborative Team Conference in Montreal from May 3 - 5, 2018. This conference is the first of its kind in Canada and will bring together experts from around the world to share knowledge and develop an agenda to further ME/CFS research. (Conference will be in English.)

    The three-day conference, Advancing an International Research Agenda to Address ME/CFS Research Priorities, lists an exciting program, with an educational symposium on the diagnosis and management of ME/CFS, lectures covering current research and advances, and a roundtable discussion that will join an international group of clinicians and researchers to outline research priorities.

    We are excited to share that Ronald W. Davis, PhD, will be giving a talk titled, "An integrative, molecular, data-and technology-driven approach to ME/CFS", and Linda Tannenbaum, CEO/President will be speaking about "Open collaboration and patient engagement a must". Linda will also participate in a roundtable discussion on "Creating a Transformative Research Agenda for ME/CFS".

    Other well-known researchers speaking at the conference include Dr. Maureen Hanson and Dr. Jonas Bergquist, members of the OMF Scientific Advisory Board.

    Day two of the conference, May 4th, is open to the community. We encourage our Canadian friends to join us for this day. OMF will host a table, please stop by and say hello. For more information and to register, please visit the conference registration.
    [​IMG]


    End ME/CFS Worldwide Tour ... Netherlands & Italy

    “Hope is a little light in your heart that will give you courage today and strength tomorrow”

    Linda Tannenbaum, CEO/President, will once again embark on a European Tour of Hope in June, visiting the Netherlands and Italy after attending the Biomedical Research into ME Colloquium and Invest in ME Research International ME Conference (IIMEC) in London.

    OMF’s End ME/CFS Worldwide Tour– Accelerating Collaborative Research:

    Linda will present an OMF research update, share hope, and raise awareness.

    Netherlands: June 3rd. Host: ME/cvs Vereniging. Speakers: Linda Tannenbaum & Dr. Ruud Vermeulen.

    Italy: June 8th. Host: CFS Associazione Italiana onlus and Associazione CFS Veneto onlus. Speakers: Linda Tannenbaum, Prof. Umberto Tirelli and other leading ME/CFS clinicians.
    Recent & Upcoming Events

    ME/CFS Clinicians Summit was hosted at the Bateman Horne Center in Salt Lake City, Utah. This meeting was a collaborative effort to bringing together top expert ME/CFS clinicians to discuss diagnosis and treatment. Read more about the Summit here.
    [​IMG] [​IMG]


    ME/CFS Foundation South Africa recently hosted over 160 guests for a screening of Unrest in Cape Town. Linda Tannenbaum skyped in for Q&A to help educate healthcare professionals including medical doctors, psychiatrists, psychologists, physiotherapists, nurses, occupational therapists, and neurologists. Read more about the event here.

    [​IMG] [​IMG]


    On March 16, 2018 Unrest will be shown to a special audience of government officials and clinicians in Buenos Aires, Argentina. Following the screening, Linda Tannenbaum will participate via skype. The organizers will translate Linda's talk and Q&A. We are honored to be a part of improving the lives of patients in South America.
    [​IMG]

    The Massachusetts Department of Public Health in conjunction with the Massachusetts CFIDS/ME & FM Association are hosting a special screening of Unrest for public health and healthcare professionals, scientists and researchers only on Tuesday March 27, 2018. Ronald W. Davis, PhD, will be a part of the post-screening panel via skype with Jennifer Brea and other healthcare professionals. In addition, Dr. Davis will be meeting individually with interested scientists to learn how their work might fit with ME/CFS research.

    A Day of Unrest in Honor of the Gelpi Family - In honor of the Gelpi family, life-long friends are organizing a fundraiser with a screening of Unrest at the historic Avalon Theatre in Grand Rapids, Colorado on Sunday, April 22, 2018. Linda Tannenbaum will attend the event and speak about OMF's research. To learn more, click here. Tickets can be purchased here.
    In Memoriam
    [​IMG]

    It is with great sadness that we announce the passing of H. Kenneth Walker, MD, a founding member of OMF's Board of Directors. Ken was a Professor of Medicine, Neurology, and Global Health at Emory University and Grady Memorial Hospital in Georgia. He was a great humanitarian. Linda Tannenbaum said, "He was a wonderful and giving man and will be very much missed." OMF Board Member Deborah Rose added, "May he be remembered for all of the help that he brought to millions of people around the world."

    Click here to read Dr. Walker's obituary.

    OMF Science Wednesday

    [​IMG]

    Every Wednesday OMF shares the #OMFScienceWednesday post about the science that OMF is supporting: background on key areas, updates on the latest research, explanations of topics relevant to ME/CFS, and more.

    To ensure that you have access to this important news, each newsletter will provide you with links to each of the stories in the last few weeks. To build our international family, these posts are also translated into many languages. Visit our Science Wednesday archives here and translations here.

    OMF-funded research: diagnostic and drug-screening technology - Facebook
    OMF-funded research: T cells and molecular immunology - Facebook

    What do T cells and B cells do? - Facebook

    Olav Mella talks autoimmunity and metabolism in ME/CFS-Facebook


    A Message from Linda

    There are many wonderful people that have helped us behind the scenes for many years and H. Kenneth Walker, MD, MCP, FAAN, was one of those special remarkable and beloved individuals.

    In addition to his many achievements as a professor of medicine and neurology at Emory University School of Medicine, Ken played an indispensable role in supporting and promoting OMF's work from the very beginning, even prior to our official founding in 2012. He remained an active board member for many years, and we will always remember his dedication to our work and to making life better for ME/CFS patients. Our thoughts are with Ken's family and friends as they mourn his loss.

    I am deeply saddened by Ken’s passing and am tremendously grateful for his leadership and commitment to helping others.

    As we move forward, with our grateful thoughts of Ken, we want to thank you, our community and our generous donors including the incredible philanthropist, “Pine”, as we accelerate our current research projects and start new ones this year. It is my personal commitment to do whatever I can to accelerate research to find answers.

    Thank you for helping to spread our message of hope.

    With hope for all,

    [​IMG]
    Linda Tannenbaum
    CEO/President
    [​IMG]


    B


    @Janet Dafoe (Rose49) @AshleyHalcyoneH
     
    Last edited: Mar 13, 2018
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  2. ebethc

    ebethc Senior Member

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    Has OMF published a plan re how they're going to spend the pineapple money? even high-level, ie, 5% on advocacy/travel/hosting board meetings; 20% to genetic research; 15% to developing diagnostic tools, etc., etc. It's been 5 weeks already..
     
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  3. Janet Dafoe (Rose49)

    Janet Dafoe (Rose49) Board Member

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    Ron and his team's first priority is to make sure the research is going as fast as it can. They are meeting to plan specifically how to scale up the current projects, add some new ones that have been waiting for funds, figure out who new to hire, and keep the current progress going at the same time. At the moment, getting this huge donation leveraging the research as fast as possible is #1. They will let you know as soon as they can, but right now they are focussing on the research and planning. All this is time intensive, especially finding the right people to hire. (5 weeks is not a long time for such a big operation!)
     
  4. ebethc

    ebethc Senior Member

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    I live in the bay area and have worked at companies that scale up at a crazy pace...we're talking 10x in a few years ($300m -> $3b), working on complex, cross-functional teams, building new technology and dealing w difficult partners in other countries who are critical to our success, etc. etc.....You're preaching to the choir when you say it's not easy, however it's EXTREMELY common here and I know for a fact that ppl in your backyard solve this problem all the time...Maybe it's time to hire an operations person?? Subject Matter Experts (SME's) like engineers and scientists and designers get thrown into management w a lot of operations responsibility and often times hate it, or can't adapt as fast as they need to (even if they eventually catch on..).. I've seen it hundreds of times.. They'd rather be close to the product and are often times not interested in management.. There are lots of stories about this happening, like when Sergey and Larry hired Eric Schmidt, or Zuck hired Sheryl, but mostly it's not so grandiose.. It happens all the time and mostly at a much more mundane scale..The point is that SV is full of operations ppl who can partner w SME's and help scale.. And, by the way, 5 weeks is almost HALF a QUARTER... Nobody takes that long to come up w a high level plan, because they have a board and maybe stockholders to answer to....When i worked at startups we spent 2 wks max on board presentations, while doing all our other work...

    FWIW: coincidentally, I read this article over the weekend on scaling a business...
    http://firstround.com/review/give-away-your-legos-and-other-commandments-for-scaling-startups/
     
  5. Janet Dafoe (Rose49)

    Janet Dafoe (Rose49) Board Member

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    This isn't a startup. It's a science lab. Ron has extensive experience with both. He knows how to do science and he knows how startups work and scale things up. This donation money is precious. He wants to make sure it is all leveraged towards results.
     
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  6. neweimear

    neweimear Senior Member

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    And we are all desperately waiting for results .. We have heard very little in terms of research findings since the Symposium last August. There is nothing in the March newsletter either....time just keeps passing on. So many of us are donating, we hear talk of treatments...progress etc... pilot trials but I feel we have very little since this time last year. It would be nice to know more. I was told months ago that pilot trials would be starting soon but where are they? @Janet Dafoe (Rose49)
     
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  7. Vicki Cole

    Vicki Cole Senior Member

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    You echo what i have been thinking and feeling too @neweimear . I appreciate there's a 'lot of data' to get through but for how many precious years... I need hope that things are moving; it feels so still right now...
     
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  8. Mary

    Mary Forum Support Assistant

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    I trust Ron and Janet and OMF to know what they're doing - they've gotten this far without government funding.

    Yes, we're all desperately awaiting results, and probably none more so than Ron and Janet. I know they are doing everything possible to find answers.
     
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  9. neweimear

    neweimear Senior Member

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    Yes but it would be nice to be told more about what's going on. One example is OMF saying they will be commencing pilot trials shortly and then hearing nothing about such trials.
     
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  10. Ben H

    Ben H OMF Correspondent

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    As a severely ill patient speaking, OMF correspondent aside, I think OMF do an exceptional job of keeping people informed.

    Firstly, there is the monthly newsletter, of which there have been updates since last August about what direction the research is going in.

    Secondly, there are videos with Prof. Davis and his responses to questions about the research.

    Thirdly, there is the new ScienceWednesdays which should expand and give an insight into the lab, and the one just posted talks about a new potential hypothesis.

    Then there was the unprecedented Community Symposium last year.

    You also have @Janet Dafoe (Rose49) on the forum who regularly answers questions posited to Ron and also passes on theories from the community. I also try and do the latter.

    You also have myself as a volunteer posting on the forum with the Newsletter, ScienceWednesdays and the last video I did, among other things. Unfortunately I have been too sick to do more but it is in the planning.

    I do not know of any other organisation that does anything like as much. We are trying our hardest here.

    I truly empathise with how long this seems to take, as much as anyone. But personally, as a patient, I think we are being kept very well informed.


    B
     
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  11. neweimear

    neweimear Senior Member

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    @Ben H thank you Ben and I wish I was like you, always seeing everything in a positive light. Unfortunately, some days it seems like groundhog day. I known we get loads of correspondence, my point was about pilot trials that were mentioned months ago but we have heard nothing since. I am grateful for all they do and for all you do. I would just love to know how far we really are from treatments and when those pilot trials are going to happen.
     
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  12. Ben H

    Ben H OMF Correspondent

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    I do not always see everything in a positive light. I think its nigh on impossible with this illness. I do try-when I can think-to rationalise what is feasible however. They are two separate things.

    @Janet Dafoe (Rose49) may know more specifically about the pilot trials, or she may not, I do not know. I do know that the drug trial will not be random but may be based upon clues from the drug screening on the impedance test (which had an update in a recent SciWeds post).


    B
     
    Last edited: Mar 14, 2018
  13. neweimear

    neweimear Senior Member

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    There were to be three pilot trials in the pipeline. I've no idea what any of those were to be. Thanks for getting back again Ben, you are always very gracious. I am worried about my own situation as my health is so poor, anytime a drug trial is mentioned I get very hopeful naturally enough. And then inevitably disappointed when months pass and nothing happens. Hopefully, it will come good in the end for all of us
     
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  14. ebethc

    ebethc Senior Member

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    would you consider getting feedback (eg polls) to make sure your efforts are well placed? most of the comments here are broad and probably not very actionable, which might be frustrating.. Working more doesn't = providing more value to the end-user... My 2 cents, by content type:

    • Videos by Ron - excellent and thank you
    • Community Symposium - do you mean the august conference w the board? loved the videos, and thank you.
    • Science Wednesday - too soon to tell.. Looking forward to seeing more.
    • Newsletters - it's a 1.0 version, imo... WIIFM factor super low...see below
    • GAP/Opportunity - what's missing is context, NOT hard work.....How are all the activities rolling up to the vision and the overall priorities? sharing how pine $$ is being spent (top 4-6 areas) would help understand priorities, and provide insight into the most promising areas of investigation, in Ron's expert opinion...

    For me, the utility of the content varies.. ie, the Ron videos are excellent b/c they contain solid info on the science... the newsletter is on the other end of the spectrum, like the type of letter parents send at christmas time to brag about their kids (Linda got an AWARD! We're traveling tons!) ... The WIIFM (what's in it for me) factor is ultra low.. UNLESS you can connect it to outcomes... eg, We're going to conferences for the purpose of <fundraising or recruiting scientists or evangelizing the science behind CFS or something else>.. Connect objectives to outcomes, like, I'm going to conferences to recruit scientists, which might rollup to the delineation of pine spending, eg X% on recruiting/hiring... Otherwise, I'm confused by the conferences...Ppl are probably going to freak out, but I'm going to say there's an elephant in the room again: Ron is 75.. He's wonderful and I wish we could clone him, but that's not going to happen and I'm VERY worried that he's not going to be able to follow through on all this.. Clearly articulating the vision and the priorities and hiring the right people is so important ... Maybe it's happening and there's a disconnect between that and the communications. I hope that's it...
     
  15. Ben H

    Ben H OMF Correspondent

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    Feedback is always welcome-please send an email to OMF. Polls, after the events last year I am absolutely not comfortable with, for a plethora of reasons.

    I am aware and it goes without saying that OMF are aware that ‘working more doesn’t=more value to the end user’.

    I agree that Linda getting an award may not be the most exciting thing for the patients for sure. It is still an important point however as it increases the recognition of OMF. Much like the recent Bitcoin donations did.

    I agree as a patients videos updates are probably the most exciting thing-but we can't have them all the time because Prof Davis is working constantly on the research, his time is extremely limited already, and breakthroughs do not happen all the time.

    You’ve missed many context points- for example the ME/CFS clinicians summit. The context here, written in the newsletter was to discuss diagnosis and treatment.

    The same (in the above newsletter) for Linda skyping in for the Q and A with the ME/CFS Foundation South Africa- to educate healthcare professionals. This is all extremely important.

    The context for the IIME18 is pretty clear too, as was the Community Symposium last year.

    There is plenty of context given.

    It may not always be what you want to see, but that doesn’t invalidate it. There is a broader picture here.

    I agree the vision, priorities and hiring the right people are extremely important (hence time taken) and they have all been addressed by Janet @Janet Dafoe (Rose49) and in a broader sense the previous newsletters, conferences etc. This takes time, 5 weeks is not a lot at all, though it feels like it as a patient, and just because something isn’t explicitly mentioned doesn’t mean it isn’t happening as it feels (to me) you are implying.

    Sometimes I think because OMF is so transparent and communicates so much, some expectations become unreasonable and a platform is given for these expectations (which would not be there if OMF were not so communicative!).

    I think its good to remember just how unorthodox and extraordinary OMF are in keeping patients informed and involved, compared to other organisations and considering the illnesses history.



    B
     
    Last edited: Mar 15, 2018
  16. ebethc

    ebethc Senior Member

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    @Ben H

    thanks for your work on OMF content, Ben... We're going to have to agree to disagree on few things, and that's fine.
     
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  17. Laurie P

    Laurie P

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    I completely agree!
     
  18. dreampop

    dreampop Senior Member

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    If your expecting groubreaking updates every 3-6 months with detailed developements with the organization, research etc even more often than that and exceding what is already provided, your expectations are wildly off.

    We've just heard 2-3 new studies funded by the OMF. As well as the "fireside". In any case, unfortuntely you don't get to chose when findings come up, and sharing preliminary findings (like with sticky blood) is generally not productive or helpful.

    @ebethc I can't for the life of me fathom what you expect. Pretty sure the only person that can expect a delineation of the 5M is Pine. Imagine asking what your asking from the NIH study, or any other major researcher in CFS, or medicine at all. Medical research is not as flexible as a tech start-up, and $5M isn't the kind of money where you can throw everything out and start over again with personnel, studies, et.

    I would hope OMF is working on publishing, because that is the type of communication that really matters. Opening up communcation to this degree on this forum is great, but it's also a slippery slope. Are you accountable to every comment? Is Ron accountable to every one's personal research agenda? Is OMF accountable to an individual's hope? Obviously not, but it will take great restraint to stop these becoming issues.
     
  19. Ben H

    Ben H OMF Correspondent

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    Thanks for your comment and I agree disagreeing is fine, ofcourse.

    Thanks Laurie.

    Salient points, and exactly on the mark @dreampop .

    I can confirm that the team are working on publishing.


    B
     
    Last edited: Mar 15, 2018
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  20. geraldt52

    geraldt52 Senior Member

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    I think that PWME who have been sick less than 10 years, about when the WPI "XMRV" study was published, have a difficult time fully appreciating the multitude of positive things going on nowadays...in many places, not just OMF. Before the WPI study kickstarted an interest in CFS with some pretty influential people, there had been little to nothing in the way of genuine research for literally decades...and little hope that it would ever change.

    It's fine to wish for more, and we surely deserve more than we've been given, but we also need to be thankful for the work being done by people who might well be putting a limit on their career by even involving themselves in CFS. It becomes more obvious to me every day that it is probably going to be a long slog, and at my age it may never benefit me, but we can't hold the people who are doing the work now responsible for the work that wasn't done in the past.
     

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