Open Medicine Foundation

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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 (CFS), myalgic encephalomyelitis (ME), fibromyalgia (FMS), and 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 patient network as developed through email 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."[1]Amy Carlson is an OMF Ambassador also raising awareness and fundraising. As is celebrated international author Karin Alvtegen and opera star Jacqueline Ko.

ME/CFS Scientific Advisory Board[edit | edit source]

The advisory board is made up of world-renowned researchers:[2]

Board[edit | edit source]

The OMF board comprises:[3]

Research Projects[edit | edit source]

End ME/CFS Project[edit | edit source]

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[4]

The project has run a number of different studies, including the ME/CFS Severely Ill, Big Data Study.

ME/CFS Severely Ill, Big Data Study[edit | edit source]

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.[5]

Mestinon trial[edit | edit source]

A clinical trial of mestinon was announced in May 2020. Mestinon is an existing drug which may help with post-exertional malaise (PEM).[6] This will be a pilot treatment trial.

Kynurenine trial[edit | edit source]

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[7][6]

COVID-19 Study[edit | edit source]

This project was announced in May 2020, during the 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.[6]

Other projects[edit | edit source]

In 2016, "Mitochondria Man Gets Money UK Goes Mega Chronic Fatigue Syndrome Research Moves Forward"

Collaborative centers[edit | edit source]

Stanford University, United States[edit | edit source]

Led by Ron Davis, the Stanford University OMF collaborative center aims to produce a blood-based diagnostic test for ME/CFS.[8]

Harvard, United States[edit | edit source]

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).[9] It is led by Ronald Tompkins and Wenzhong Xiao.[9]

Uppsala University, Sweden[edit | edit source]

The OMF's Uppsala University collaborative center is led by Jonas Bergquist.[10]

Montréal, Canada[edit | edit source]

The CHU Sainte-Justine/Université de Montréal collaborative center was established in 2020, and is led by Alain Moreau.[11]

Notable research[edit | edit source]

Funding[edit | edit source]

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.[13][14][15]

In January 2018 Pineapple fund, a philanthropic project by an early bitcoin investor[16], donated $1 million to OMF.[17] The anonymous donor was so touched by the outpouring of appreciation from the worldwide ME community that they increased the donation to $5 million.[17]

In May 2018, OMF received a new $1 million anonymous pledge to escalate Dr. Ronald Davis’s systems biology approach with Robert Phair.[18]

Advocacy[edit | edit source]

The OMF and the Davis-Dafoe Family held two screenings of Forgotten Plague. Dr. Davis spoke about ME/CFS and research after the screening.[19][20]

Dr. Davis, along with colleagues, have written and signed open letters in reference to research funds and the PACE trial, and taken part in many Millions Missing protests.

Talks and interviews[edit | edit source]

Community Symposium

Ronald Davis

2019

2018

2017

2016

Ronald Tompkins

2019

Linda Tannenbaum

2019

2018

2017

2016

Christopher Armstrong

2019

Online presence[edit | edit source]

Learn more[edit | edit source]

See also[edit | edit source]

References[edit | edit source]

  1. "OMF Ambassador - Stuart Murdoch | Open Medicine Foundation". Open Medicine Foundation. Retrieved Oct 9, 2018. 
  2. "Scientific Advisory Board | Open Medicine Foundation". Open Medicine Foundation. Retrieved Oct 9, 2018. 
  3. "Foundation Board | Open Medicine Foundation". Open Medicine Foundation. Retrieved Oct 9, 2018. 
  4. Open Medicine Foundation. "The End ME / CFS Project". Open Medicine Foundation. Retrieved May 1, 2020. 
  5. Davis, R. W.; Wilhelmy, J.; Nemat-Gorgani, M.; Kashi, A.; Esfandyarpour, R. (Apr 25, 2019). "A nanoelectronics-blood-based diagnostic biomarker for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)". Proceedings of the National Academy of Sciences: 201901274. doi:10.1073/pnas.1901274116. ISSN 0027-8424. PMID 31036648. 
  6. 6.06.16.2 Open Medicine Foundation. "#May Momentum 2020". Open Medicine Foundation. Retrieved May 1, 2020. 
  7. Phair, Robert D.; Davis, Ronald W.; Kashi, Alex A. (2019). "The IDO Metabolic Trap Hypothesis for the Etiology of ME/CFS". Diagnostics. 9 (3): 82. doi:10.3390/diagnostics9030082. 
  8. Open Medicine Foundation (Dec 7, 2017). "Collaborative Research Center at Stanford aims to produce blood-based diagnostic technology for ME / CFS". Open Medicine Foundation. Retrieved Apr 22, 2020. 
  9. 9.09.1 Open Medicine Foundation. "The Harvard ME / CFS Collaboration at the Harvard Affiliated Hospitals". Open Medicine Foundation. Retrieved Apr 22, 2020. 
  10. Open Medicine Foundation. "ME / CFS Collaborative Research Center at Uppsala University". Open Medicine Foundation. Retrieved Apr 22, 2020. 
  11. Open Medicine Foundation. "University of Montreal Collaborative Research Center". Open Medicine Foundation. Retrieved Apr 22, 2020. 
  12. Bynke, Annie; Julin, Per; Gottfries, Carl-Gerhard; Heidecke, Harald; Scheibenbogen, Carmen; Bergquist, Jonas (Aug 1, 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". Brain, Behavior, & Immunity - Health. 7: 100107. doi:10.1016/j.bbih.2020.100107. ISSN 2666-3546. 
  13. Esfandyarpour, R.; Kashi, A.; Nemat-Gorgani, M.; Wilhelmy, J.; Davis, R. W. (May 21, 2019). "A nanoelectronics-blood-based diagnostic biomarker for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)". Proceedings of the National Academy of Sciences. 116 (21): 10250–10257. doi:10.1073/pnas.1901274116. ISSN 0027-8424. 
  14. https://projectreporter.nih.gov/project_info_description.cfm?aid=9577948&icde=40034644
  15. Dafoe, Janet [@janetdafoe] (Apr 22, 2020). "This is so disingenuous" (Tweet) – via Twitter. 
  16. "Pineapple Fund". Retrieved Jun 23, 2019. 
  17. 17.017.1 "Pineapple Fund increases donation to $5 million | Open Medicine Foundation". Open Medicine Foundation. Feb 2, 2018. Retrieved Oct 9, 2018. 
  18. "New $1 million donation for ME/CFS research! | Open Medicine Foundation". Open Medicine Foundation. May 24, 2018. Retrieved Oct 9, 2018. 
  19. Ryan Prior (Director); Nicole Castillo (Director); Anthony Komaroff; Hillary Johnson; Ron Davis (2015), Forgotten Plague (documentary film) 
  20. #ME Action (Dec 2015), Forgotten Plague Screening Announcement, Palo Alto, CA, US 

chronic disease - a disease or condition that usually lasts for 3 months or longer and may get worse over time

mitochondria - Important parts of the biological cell, with each mitochondrion encased within a mitochondrial membrane. Mitochondria are best known for their role in energy production, earning them the nickname "the powerhouse of the cell". Mitochondria also participate in the detection of threats and the response to these threats. One of the responses to threats orchestrated by mitochondria is apoptosis, a cell suicide program used by cells when the threat can not be eliminated.

ME/CFS - An acronym that combines myalgic encephalomyelitis with chronic fatigue syndrome. Sometimes they are combined because people have trouble distinguishing one from the other. Sometimes they are combined because people see them as synonyms of each other.

Severely Ill Patient Study (SIPS) - A study funded by the Open Medicine Foundation and led by Ron Davis and Wenzhong Xiao. It includes over 1000 tests per patient, including the patients' genome, gene expression, metabolomics, microbiome, and others. Formerly known as the ME/CFS Severely Ill Big Data Study. (Learn more: www.omf.ngo)

post-exertional malaise (PEM) - A notable exacerbation of symptoms brought on by small physical or cognitive exertions. PEM can last for days or weeks. Symptoms can include cognitive impairments, muscle pain (myalgia), trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, among others.

chronic fatigue syndrome (CFS) - A fatigue-based illness. The term CFS was invented invented by the U.S. Centers for Disease Control as an replacement for myalgic encephalomyelitis (ME). Some view CFS as a neurological disease, others use the term for any unexplained long-term fatigue. Sometimes used as a the term as a synonym of myalgic encephalomyelitis, despite the different diagnostic criteria.

myalgic encephalomyelitis (ME) - A disease often marked by neurological symptoms, but fatigue is sometimes a symptom as well. Some diagnostic criteria distinguish it from chronic fatigue syndrome, while other diagnostic criteria consider it to be a synonym for chronic fatigue syndrome. A defining characteristic of ME is post-exertional malaise (PEM), or post-exertional neuroimmune exhaustion (PENE), which is a notable exacerbation of symptoms brought on by small exertions. PEM can last for days or weeks. Symptoms can include cognitive impairments, muscle pain (myalgia), trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, among others. An estimated 25% of those suffering from ME are housebound or bedbound. The World Health Organization (WHO) classifies ME as a neurological disease.

myalgic encephalomyelitis (ME) - A disease often marked by neurological symptoms, but fatigue is sometimes a symptom as well. Some diagnostic criteria distinguish it from chronic fatigue syndrome, while other diagnostic criteria consider it to be a synonym for chronic fatigue syndrome. A defining characteristic of ME is post-exertional malaise (PEM), or post-exertional neuroimmune exhaustion (PENE), which is a notable exacerbation of symptoms brought on by small exertions. PEM can last for days or weeks. Symptoms can include cognitive impairments, muscle pain (myalgia), trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, among others. An estimated 25% of those suffering from ME are housebound or bedbound. The World Health Organization (WHO) classifies ME as a neurological disease.

The information provided at this site is not intended to diagnose or treat any illness.
From MEpedia, a crowd-sourced encyclopedia of ME and CFS science and history.