A Rewarding 2017
In 2017, Open Medicine Foundation raised over $3 million* to fund research on ME/CFS. Together, we have built a community of thousands of patients, family members, caregivers, doctors and advocates. Thanks to your support, OMF has been able to donate to teams doing groundbreaking research, putting effective treatments and a cure in closer reach than ever before. Thank you for being a part of this groundbreaking year for OMF!
We are delighted to share with you some highlights of what we’ve accomplished together!
OMF Welcomes New Members to the Scientific Advisory Board
- Jonas Bergquist, MD, PhD, Uppsala University, Sweden – Dr. Bergquist has done exciting work on the proteins found in the cerebrospinal fluid of ME/CFS patients.
- Øystein Fluge, MD, PhD, & Olav Mella, MD, PhD, University of Bergen, Haukeland University Hospital, Norway – Drs. Fluge and Mella have made great strides in studying the immune system in ME/CFS, and they carried out the trials on Rituximab.
- Maureen Hanson, PhD, Cornell University, New York – Dr. Hanson has advanced the field of ME/CFSby studying the microbiome and metabolism of patients.
At this groundbreaking scientific conference at Stanford, 30 international researchers spent two days sharing unpublished data and ideas, brainstorming, and establishing collaborative alliances in ME/CFS research. Sharing unpublished data is a very effective way to accelerate the research because scientists can consider these results without waiting for publication. This interdisciplinary team of experts in numerous fields, including 2 Nobel laureates, and several members of the National Academy of Sciences, discussed genetics, immunology, data integration, related diseases, drug discovery, and lessons from these fields for ME/CFS research. The sense of excitement and progress was palpable.
The next day, the scientists presented fascinating and informative talks at the Community Symposium on the Molecular Basis of ME/CFS at Stanford. 300 patients, researchers, doctors, family members, and caregivers attended, with over 3,000 joining via livestream to learn about the latest research.
Scientific Research
Open Medicine Foundation funded multiple, diverse biomedical research initiatives to help understand and discover treatment solutions for ME/CFS.
- Severely Ill Big Data Study – This study, led by Drs. Davis and Xiao, included over 1,000 tests per patient, producing, to our knowledge, the biggest dataset ever generated in a cohort of ME/CFS patients. This big data study examined the patients’ genome, gene expression, metabolomics, microbiome, cell-free DNA sequencing and quantitation, and cytokines, as well as a range of tests typically performed by a clinician. In 2017, the focus of the study was on analysis, data integration, and making the datasetavailable to researchers at the Stanford End ME/CFS Data Center (registration required). Click here to read more about our the objectives and types of data gathered in this study.
- Differences in metabolites, microbiomes, cytokines, and several clinical test results were observed between patients and controls.
- No significant differences were found for any major DNA viruses between patients and controls using cell-free DNA from the blood. By using cell-free DNA it was possible to look for even the viruses that can hide behind the blood-brain barrier escaping detection by normal means. In addition, the blood of patients was examined for new pathogens by isolating particles from the blood and using DNA sequencing. No new pathogens were found.
- SF-36 scores are worse in ME/CFS than in several other major diseases and correlate the least with depression and mental illnesses.
- Genetics have been a particularly interesting aspect of this study, as the team has identified several candidate genes that may predispose individuals to develop ME/CFS (or severe ME/CFS). This is exciting because it may tell us about the root cause of the disease – which still remains a mystery.
- Amping up the analysis is a priority given the complexity of this dataset. OMF has funded a full-time bioinformatician at the Stanford Genome Technology Center to help complete the analysis of this dataset and publish it in the scientific literature, and to continue integrating it with future projects.
- Diagnostic technology development – Dr. Davis’s team at Stanford has developed two technologies that can be used to distinguish ME/CFS patient blood samples from healthy blood samples.
- Nanoneedle: 10 patients and 10 controls were tested on the nanoneedle biosensor platform. This is a nanofabricated device that measures electrical impedance from a drop of blood. Both CFSand healthy white blood cells in their own plasma were stressed by adding salt. The impedance increased in CFS cells while healthy cells showed no change. It distinguished patients from controls in every case. By switching the plasma so that healthy cells were placed in CFS plasma and CFS cells were placed in healthy plasma, it was discovered that the impedance increases tracked with the plasma, which suggests that there is something in the plasma that is causing this effect. These efforts were covered in a Nature news feature about promising new research in ME/CFS. Some small molecules were then tested using this technology, and the results suggest that the technology can be used for screening candidate drugs for ME/CFS. Click to read more about why a blood-based diagnostic could be a game-changer.
- Magnetic levitation: This device uses a ferrofluid in a glass capillary surrounded by permanent magnets. This generates a density gradient and cells move to their respective densities in the capillary. Their position is imaged by a camera from a smart phone. It was discovered that white blood cells from CFS patients were less dense than those of healthy controls. One patient was followed for several months, consistently showing a low density. It was further observed that there was a correlation between the lightness of the cells and the severity of symptoms. This could be a very inexpensive diagnostic test, and more patients will be tested in the next year.
- In the future, all patients will be measured on all of the diagnostic platforms, enabling comparison of their efficacy and a determination of what combination of them will be most useful to export for diagnostic testing.
- Autoantibodies – Funded by OMF, Dr. Jonas Bergquist’s team at Uppsala University, Sweden, has found indications of higher autoantibodies against muscarinic and beta-adernergic receptors in patients. Click here to read more.
- Metabolic Validation – Funded by OMF, Dr. Robert Naviaux’s team at the University of California, San Diego, performed a study to validate the findings of their 2016 metabolomics paper. They found that 77% of the metabolic pathway abnormalities were confirmed, strengthening the evidence for this metabolic signature in ME/CFS. Click here to read more.
ME/CFS Internships – OMF funded four internships to bring new researchers into ME/CFS. Three interns were placed at the Stanford Genome Technology Center under Dr. Ron Davis. One intern was placed at Nova Southeastern University under the leadership of Dr. Nancy Klimas, in partnership with the Blue Ribbon Foundation.
Outreach and Advocacy:
- End ME/CFS Worldwide Tour - Ms. Tannenbaum delivered 21 presentations in six countries and seven U.S. cities. A video of the New York presentation is available. The tour was hosted in partnership with local, state, and national organizations.
- Video Research Updates - Dr. Davis recorded two video research updates, one in February and one in December. In addition, he recorded a follow-up Q&A video.
- Education - OMF established an Education Committee, chaired by advocate Mary Dimmock, co-author of Thirty Years of Disdain. With a grant from the Variety Children’s Charity of Southern California, OMF launched TEACH M.E., an education, outreach and awareness program to benefit children with ME/CFS.
- Isle of Man ME/CFS Services - With the support of the ME Support Isle of Man, Linda Tannenbaum, met with Isle of Man officials, who agreed to set up additional services for children and adults with ME/CFS.
- Premier of Unrest Film - Linda Tannenbaum, Dr. Ron Davis, Dr. Janet Dafoe, and Ashley Haugen joined Director Jennifer Brea for the premiere of the ME/CFS documentary Unrest at the Sundance Film Festival, and spoke at several film screenings.
- Millions Missing Demonstration - OMF participated at the #MillionsMissing Rally in Sacramento, California with speeches from Janet Dafoe, Ashley Haugen, and our Director of Communications and Development Marilyn Simon-Gersuk.
OMF sponsored 30+ Team OMF events around the world in 2017, raising over $160,000 to support research. Team OMF is growing and hope is spreading. Please contact us if you would like to organize an event in your area!
OMF is proud to announce the following recognition and awards for our efforts:
- Platinum status from Guidestar, a 501(c)(3) public charity that collects, organizes, and presents information on charities worldwide.
- A 2017 Great Nonprofit designation, for the third year running.
- Dr. Ron Davis was interviewed for the podcast, Mendelspod in The Last Major Disease To Be Studied? Ron Davis of Stanford Thinks So.
- Dr. Davis and Ms. Tannenbaum joined ME/CFS Foundation South Africa via Skype to participate in the Carte Blanche prime-time program, educating the community on ME/CFS. (Transcript available.)
- Dr. Davis was interviewed and highlighted in the Scope article Stanford researcher develops tools to understand Chronic Fatigue Syndrome, elucidating the innovative work and development of the nanoneedle.
- Patient activist Jenny Bernsten recorded an interview with Dr. Davis, who shared his thoughts on ME/CFS research progress.
In 2018 we are increasing the intensity to fund critical research. In the coming weeks, we will share with you an exciting 2018 research plan. In the first four months, we've already received over $5 million, including donations from our OMF supporters and a grant from the Pineapple Fund, to accelerate research. This is a tremendous step forward. However, we still need each and every one of you, our OMF family, to continue your support by funding research. As we accelerate the pace, we are committed to increasing communications and keeping you informed. We invite you to visit our website to follow new developments, research findings, interviews with the scientists, and more.
Your donations, big and small, make our work possible. Please invest now to continue OMF's mission to find answers.
donate today.
With hope for all,
Linda Tannenbaum
CEO/President
*Includes major donations from Canada donated directly to the OMF ME/CFS research funds at Stanford University.