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[[File:OMF.png|right]] The '''Open Medicine Foundation''' (OMF) is an American non-profit 501(c)(3) organization established in 2012 for the purpose of funding and initiating groundbreaking research into complex chronic diseases. It supports chronic complex disease research with a focus on [[chronic fatigue syndrome]] ([[Chronic fatigue syndrome|CFS]]), [[myalgic encephalomyelitis]] ([[myalgic encephalomyelitis|ME]]), [[fibromyalgia]] (FMS), and [[chronic lyme disease|Chronic Lyme Disease]]. The OMF's current project is the [[End ME/CFS Project]]. Many of those involved in OMF, including Founder/CEO/President [[Linda Tannenbaum]], either have a [[neuro-immune disease]] or have a family member who has a neuro-immune disease. OMF's strategy is to include highly recognized and accomplished scientists with expertise in body systems linked to chronic complex diseases. The organization also has an extensive [https://www.omf.ngo/community/ patient network] as developed through email [https://www.omf.ngo/newsletter-sign-up/ newsletter subscriptions]. [[Stuart Murdoch]] is Ambassador promoting the OMF's work "through videos and messaging on their social media and websites, personal appearances, and face-to-face interactions with their communities and fans."<ref>{{Cite news | url=https://www.omf.ngo/omf-ambassador-stuart-murdoch-2/ | title = OMF Ambassador - Stuart Murdoch {{!}} Open Medicine Foundation|work=Open Medicine Foundation|access-date=2018-10-09|language=en-US}}</ref> [https://www.omf.ngo/people/amy-carlson/ Amy Carlson] is an OMF Ambassador also raising awareness and fundraising. As is celebrated international author [https://www.omf.ngo/people/karin-alvtegen/ Karin Alvtegen] and opera star [https://www.omf.ngo/people/jacqueline-ko/ Jacqueline Ko]. ==ME/CFS Scientific Advisory Board == The advisory board is made up of world-renowned researchers:<ref>{{Cite news | url=https://www.omf.ngo/scientific-advisory-board/ | title = Scientific Advisory Board {{!}} Open Medicine Foundation|work=Open Medicine Foundation|access-date=2018-10-09|language=en-US}}</ref> *Dr. [[Ronald Davis]] (Scientific Advisory Board Director, and father of [[Whitney Dafoe]]) *[[Paul Berg]] (cellular metabolism, Nobel laureate) *[[Mario Capecchi]] (genetics, Nobel laureate) *[[Mark Davis]] (immunology) *[[Craig Heller]] (exercise physiology) *[[Robert Naviaux]] (virology & cell biology, mitochondrial specialist) *[[Baldomero Olivera]] (neurobiology & pain) *[[Ronald Tompkins]] (trauma & metabolism) *[[Wenzhong Xiao]] (computational genomics) *[[David Bell]] (ME/CFS clinician. See [[1985 Lyndonville outbreak|Lyndonville outbreak]]) *[[Maureen Hanson]] (cell and molecular biology) *[[Øystein Fluge]] (oncology) *[[Olav Mella]] (oncology) *[[Jonas Bergquist]] *[[Jennifer Frankovich]] *[[Daniel Peterson]] *[[Michael Snyder|Mike Snyder]] ==Board== The OMF board comprises:<ref>{{Cite news | url=https://www.omf.ngo/about-us/omf-board/ | title = Foundation Board {{!}} Open Medicine Foundation|work=Open Medicine Foundation|access-date=2018-10-09|language=en-US}}</ref> *[[Linda Tannenbaum]] (Founder/CEO/President) *[[Kimberley Hicks]] (Treasurer) *[[Patti Linsley]] (Secretary) *[[R.P. Channing]], MD, Emeritus *[https://www.omf.ngo/people/kathryn-bach/ Kathryn Bach] *[https://www.omf.ngo/people/carol-e-jensen/ Carol E. Jensen] *[[Deborah Rose]], MD *[https://www.omf.ngo/people/joseph-morin/ Joseph Morin] *[https://www.omf.ngo/people/hany-zayed-phd/ Hany Zayed,] PhD == Research Projects == ===End ME/CFS Project=== The End ME/CFS Project is the Open Medicine Foundation's main project, and has been running over a number of years. It aims to: *find a diagnostic tool for ME/CFS *deliver treatments for ME/CFS *ultimately find a cure for ME/CFS<ref name="endmecfs">{{Cite web|url=https://www.omf.ngo/the-end-mecfs-project/ | title = The End ME / CFS Project | last = Open Medicine Foundation | first = | authorlink = Open Medicine Foundation | date = |website=Open Medicine Foundation|language=en-US|archive-url=|archive-date=|url-status=|access-date=2020-05-01}}</ref> The project has run a number of different studies, including the [[ME/CFS Severely Ill, Big Data Study]]. {{See also|End ME/CFS Project}} ===ME/CFS Severely Ill, Big Data Study=== The [[ME/CFS Severely Ill, Big Data Study]] was announced in May, 2015. The most severely ill [[ME/CFS]] patients were being studied to find a [[diagnostic biomarker]]. The project is now complete.<ref name="Davis2019">{{Cite journal | last = Davis | first = R.W. | authorlink = Ronald Davis | last2 = Wilhelmy | first2 = J. | authorlink2=Julie Wilhelmy | last3 = Nemat-Gorgani | first3 = M. | authorlink3 =Mohsen Nemat-Gorgani | last4 = Kashi | first4 = A. | authorlink4 = Alex Kashi | last5 = Esfandyarpour | first5 = R. | authorlink5=Rahim Esfandyarpour | date = Apr 25, 2019 | title = A nanoelectronics-blood-based diagnostic biomarker for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)|url=https://www.pnas.org/content/early/2019/04/24/1901274116|journal=Proceedings of the National Academy of Sciences|language=en|volume=116|issue=21|pages=10250-10257|doi=10.1073/pnas.1901274116|issn=0027-8424|pmid=31036648|quote=|via=}}</ref> {{See also|ME/CFS Severely Ill, Big Data Study}} {{See also|A nanoelectronics-blood-based diagnostic biomarker for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)}} ===Mestinon trial=== A clinical trial of [[mestinon]] was announced in May 2020. Mestinon is an existing drug which may help with [[post-exertional malaise]] (PEM).<ref name="maymomentum" /> This will be a pilot treatment trial. {{See also|Mestinon}} ===Kynurenine trial=== A pilot treatment trial of [[kynurenine]] was announced in May 2020. Kynurenine is an [[amino acid]] naturally present in the body. This trial is linked to the [[metabolic trap]] hypothesis devised by [[Robert Phair]] after analysis of the data from the [[ME/CFS Severely Ill, Big Data Study]].CFS<ref name="Phair2019">{{Cite journal | last = Phair | first = Robert D. | authorlink = Robert Phair | last2 = Davis | first2 = Ronald W. | authorlink2=Ron Davis | last3 = Kashi | first3 = Alex A. | authorlink3 = Alex Kashi | authorlink4 = | authorlink5 = | authorlink6 = | date = 2019 | title=The IDO Metabolic Trap Hypothesis for the Etiology of ME/CFS|url=https://www.mdpi.com/2075-4418/9/3/82|journal=Diagnostics|language=en|volume=9|issue=3 | pages = 82|doi=10.3390/diagnostics9030082|quote=|via=}}</ref><ref name="maymomentum">{{Cite web|url=https://www.omf.ngo/maymomentum/ | title = #May Momentum 2020 | last = Open Medicine Foundation | first = | authorlink = Open Medicine Foundation | date = |website=Open Medicine Foundation|language=en-US|archive-url=|archive-date=|url-status=|access-date=2020-05-01}}</ref> {{See also|Kynurenine}} {{See also|Metabolic trap}} ===COVID-19 Study=== This project was announced in May 2020, during the [[Severe acute respiratory syndrome coronavirus 2|coronavirus]] pandemic and aims "to track patients with [[COVID-19]] that have been discharged from the ICU, with the expectation that some will develop [[ME/CFS]]." This will involve collecting biological samples from patients, "continuous health tracking" using wearables, and "symptom data collection" over the course of two years.<ref name="maymomentum" /> {{See also|COVID-19 Study}} {{See also|Post-COVID-19 illness}} ===Other projects=== In 2016, [http://www.healthrising.org/blog/2016/05/19/mitochondria-man-gets-money-uk-goes-mega-chronic-fatigue-syndrome-research-moves-forward/ "Mitochondria Man Gets Money UK Goes Mega Chronic Fatigue Syndrome Research Moves Forward"] == Collaborative centers == === Stanford University, United States === Led by [[Ronald Davis|Ron Davis]], the Stanford University OMF collaborative center aims to produce a blood-based diagnostic test for ME/CFS.<ref>{{Cite web|url=https://www.omf.ngo/2017/12/07/collaborative-research-center-at-stanford-aims-to-produce-blood-based-diagnostic-technology-for-me-cfs/ | title = Collaborative Research Center at Stanford aims to produce blood-based diagnostic technology for ME / CFS | last = Open Medicine Foundation | first = | authorlink = Open Medicine Foundation | date = 2017-12-07 | website = Open Medicine Foundation|language=en-US|archive-url=|archive-date=|url-status=|access-date=2020-04-22}}</ref> === Harvard, United States === Established in 2018, the OMF's Harvard collaborative center involves Harvard University, and the Harvard-affiliated Brigham Women's Hospital (BWH), Massachusetts General Hospital (MGH) and Beth Israel Deaconess Medical Center (BIDMC).<ref name=":1">{{Cite web|url=https://www.omf.ngo/collaborative-research-center-harvard/ | title = The Harvard ME / CFS Collaboration at the Harvard Affiliated Hospitals | last = Open Medicine Foundation | first = | authorlink = Open Medicine Foundation | date = |website=Open Medicine Foundation|language=en-US|archive-url=|archive-date=|url-status=|access-date=2020-04-22}}</ref> It is led by [[Ronald Tompkins]] and [[Wenzhong Xiao]].<ref name=":1" /> === Uppsala University, Sweden === The OMF's Uppsala University collaborative center is led by [[Jonas Bergquist]].<ref>{{Cite web|url=https://www.omf.ngo/collaborative-research-center-uppsala/ | title = ME / CFS Collaborative Research Center at Uppsala University | last = Open Medicine Foundation | first = | authorlink = Open Medicine Foundation | date = |website=Open Medicine Foundation|language=en-US|archive-url=|archive-date=|url-status=|access-date=2020-04-22}}</ref> === Montréal, Canada === The CHU Sainte-Justine/Université de Montréal collaborative center was established in 2020, and is led by [[Alain Moreau]].<ref>{{Cite web|url=https://www.omf.ngo/collaborative-research-center-montreal/ | title = University of Montreal Collaborative Research Center | last = Open Medicine Foundation | first = | authorlink = Open Medicine Foundation | date = |website=Open Medicine Foundation|language=en-US|archive-url=|archive-date=|url-status=|access-date=2020-04-22}}</ref> == Notable research == *2020, Autoantibodies to beta-adrenergic and muscarinic cholinergic receptors in Myalgic Encephalomyelitis (ME) patients – A validation study in plasma and cerebrospinal fluid from two Swedish cohorts<ref name=Bynke2020>{{Cite journal | last = Bynke | first = Annie | authorlink = | last2 = Julin | first2 = Per | author-link2 = | last3 = Gottfries | first3 = Carl-Gerhard | author-link3 = Carl-Gerhard Gottfries | last4 = Heidecke | first4 = Harald | authorlink4 = | last5 = Scheibenbogen | first5 = Carmen | author-link5 = Carmen Scheibenbogen | last6 = Bergquist | first6 = Jonas | authorlink6 = Jonas Bergquist | date = 2020-08-01 | title = Autoantibodies to beta-adrenergic and muscarinic cholinergic receptors in Myalgic Encephalomyelitis (ME) patients – A validation study in plasma and cerebrospinal fluid from two Swedish cohorts|url=http://www.sciencedirect.com/science/article/pii/S2666354620300727|journal=Brain, Behavior, & Immunity - Health|language=en|volume=7|issue=|pages=100107|doi=10.1016/j.bbih.2020.100107|issn=2666-3546|pmc=|pmid=|access-date=|quote=|via=}}</ref> - [http://www.sciencedirect.com/science/article/pii/S2666354620300727 (Full text)] * 2016, [[Metabolic features of chronic fatigue syndrome]] == Funding == OMF have fund-raised primarily from ME sufferers and community for the research. The [[National Institutes of Health]] have rejected almost all funding applications, except for partial refunding of the technology for creating a diagnostic biomarker in ME/CFS.<ref>{{Cite journal | last = Esfandyarpour | first = R. | authorlink = Rahim Esfandyarpour | last2 = Kashi | first2 = A. | authorlink2=Alex Kashi | last3 = Nemat-Gorgani | first3 = M. | authorlink3 =Mohsen Nemat-Gorgani | last4 = Wilhelmy | first4 = J. | authorlink4 = Julie Wilhelmy | last5 = Davis | first5 = R.W. | authorlink5=Ronald Davis | date = 2019-05-21 | title = A nanoelectronics-blood-based diagnostic biomarker for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)|url=http://www.pnas.org/lookup/doi/10.1073/pnas.1901274116|journal=Proceedings of the National Academy of Sciences|language=en|volume=116|issue=21|pages=10250–10257|doi=10.1073/pnas.1901274116|issn=0027-8424|quote=|via=}}</ref><ref>https://projectreporter.nih.gov/project_info_description.cfm?aid=9577948&icde=40034644</ref><ref name="JDafoe2020">{{Cite tweet|url=https://twitter.com/JanetDafoe/status/1248561426165198850|user=janetdafoe | authorlink = Janet Dafoe | last = Dafoe | first = Janet | date = 2020-04-22 | title = This is so disingenuous}}</ref> In January 2018 Pineapple fund, a philanthropic project by an early bitcoin investor<ref>{{Cite web|url=https://pineapplefund.org/ | title = Pineapple Fund | last = | first = | authorlink = | date = |website=|archive-url=|archive-date=|url-status=|access-date=June 23, 2019}}</ref>, donated $1 million to OMF.<ref name=":0" /> The anonymous donor was so touched by the outpouring of appreciation from the worldwide ME community that they increased the donation to $5 million.<ref name=":0">{{Cite news | url=https://www.omf.ngo/2018/02/02/pineapple-fund/ | title = Pineapple Fund increases donation to $5 million {{!}} Open Medicine Foundation | date = 2018-02-02|work=Open Medicine Foundation|access-date=2018-10-09|language=en-US}} </ref> In May 2018, OMF received a new $1 million anonymous pledge to escalate Dr. [[Ronald Davis]]’s systems biology approach with [[Robert Phair]].<ref>{{Cite news | url=https://www.omf.ngo/2018/05/24/new-1-million-donation-for-me-cfs-research/ | title = New $1 million donation for ME/CFS research! {{!}} Open Medicine Foundation | date = 2018-05-24|work=Open Medicine Foundation|access-date=2018-10-09|language=en-US}}</ref> == Advocacy == The OMF and the Davis-Dafoe Family held two screenings of [[Forgotten Plague|''Forgotten Plague'']]. Dr. Davis spoke about ME/CFS and research after the screening.<ref name="ForgottenPlague" /><ref name="MEACTION20151016fp" /> Dr. Davis, along with colleagues, have written and signed [[List of open letters from researchers|open letters]] in reference to research funds and the [[PACE trial]], and taken part in many [[Millions Missing]] protests. ==Talks and interviews== '''Community Symposium''' * [https://www.youtube.com/playlist?list=PLl4AfLZNZEQPiRL9zpis8LtfaHBEMy4jS 3rd Annual Community Symposium on the Molecular Basis of ME/CFS] (Sept 2019) * [https://www.youtube.com/playlist?list=PLl4AfLZNZEQPNU0GYk3crnEnbQu_cYvO5 Inaugural Harvard Community Symposium:Finding Clarity] (June 2019) * [https://www.youtube.com/playlist?list=PLl4AfLZNZEQPxjqF4ojAO3wdCFMeriNBK 2nd Annual Community Symposium on the Molecular Basis of ME/CFS] (Sept 2018) * [https://www.youtube.com/playlist?list=PLl4AfLZNZEQOQG8vr4Rn_YY1E1cbFIu45 1st Annual Community Symposium on the Molecular Basis of ME/CFS] (Aug 2017) '''Ronald Davis''' '''2019''' * [https://youtu.be/vcYWdQbe1mY Bedside Chat with Ben] (Dec) * [https://youtu.be/lHY1Q232HsM Lecture at Albert Einstein College of Medicine] (Nov 25) * [https://youtu.be/BW4LIITEhIA ME/CFS Alert Episode #109] (Sept) '''2018''' * [https://youtu.be/WmI5Ri0V51U Presentation at IiMEC13] (May) * [https://youtu.be/ZQTURNzSbVY Research Update] (May) '''2017''' *[https://www.youtube.com/watch?v=jXL2xzxCXBw Q&A on ME/CFS Research with Dr. Ron Davis] (Mar 7) *[https://www.youtube.com/watch?v=sGBXXlQO49g An Update on ME/CFS Research with Dr. Ronald W. Davis] (Feb 21) *[https://www.youtube.com/watch?v=-bs6_5Ldat4 Scientist Ron Davis Tells How We Are "Fast-Tracking" ME/CFS Research] (Feb 3) '''2016''' *[https://www.youtube.com/watch?v=wz5we-QZ2Q4 Getting Answers to ME/CFS Faster through Collaboration and Openness] (Dec 13) *[https://www.youtube.com/watch?v=si_JJf-SVnQ Short Story of a Family's Struggle with ME/CFS] (May 21) '''Ronald Tompkins''' 2019 * [https://youtu.be/He0WOVHVQCw ME/CFS Alert Episode #110] (Sept) * [https://youtu.be/AAKKHRBL71k Patient Conversations: Interviews Dr. Alan Gurwitt] (June) * [https://youtu.be/JW8YYJDSEdo Patient Conversations: Interviews Rivka Solomon] (April) '''Linda Tannenbaum''' 2019 * [https://youtu.be/Y6NdyrNqvF4 ME/CFS Alert Episode #112] (Sept) * [https://youtu.be/C20MwiYfSGg Guest with Llewellyn King on The Joe Madison Show] * [https://youtu.be/3vhtcbq_iX4 What is ME/CFS] '''2018''' * [https://youtu.be/BpuM75LHTYI The Story Behind OMF] (Nov) * [https://youtu.be/VIuGeBqCFhM What is ME/CFS] '''2017''' * [https://youtu.be/Uul2HCWhIF4 Worldwide Tour Presentation (NY)] (June) '''2016''' *[https://www.youtube.com/watch?v=L_7XmWcI3fE Episode 79 - Linda Tannenbaum] (May 8) '''Christopher Armstrong''' 2019 * [https://uninvisiblepod.com/2019/10/30/episode-46-chris-armstrong/ Uninivisible Podcast Episode #46] (Oct) * [https://www.youtube.com/watch?v=loSrAyKXyuM&feature=youtu.be ME/CFS Alert Episode #111] (Sept) == Online presence == *[https://www.omf.ngo Website] *[https://www.facebook.com/OpenMedicineFoundation Facebook] *[https://twitter.com/OpenMedF Twitter] *[https://www.youtube.com/channel/UC0kN-Gt9WJp7pWZJn2oDUbA YouTube] == Learn more == *[https://www.omf.ngo/what-is-mecfs/ What is ME/CFS?] ==See also== *[[Ronald Davis]] *[[Linda Tannenbaum]] *[[Stuart Murdoch]] *[[Open Medicine Foundation Canada]] *[[Ron Davis]] *[[Robert Naviaux]] == References == <references> <ref name="ForgottenPlague">{{citation | author1 = Ryan Prior (Director) | author2 = Nicole Castillo (Director) | author3 = Anthony Komaroff | author4 = Hillary Johnson | author5 = Ron Davis | title = Forgotten Plague | medium = documentary film | date = 2015 | url = https://www.tugg.com/titles/forgotten-plague }}</ref> <ref name="MEACTION20151016fp">{{citation | author = #ME Action | title = Forgotten Plague Screening Announcement, Palo Alto, CA, US | date = Dec 2015 | url = https://www.facebook.com/MEActNet/posts/1661003820848684 }}</ref> </references> [[Category:Research initiatives]] [[Category:American research initiatives]] [[Category:Organizations]] [[Category:Non-profit organizations based in the United States]]
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