Channel Title: Open Medicine Foundation - OMF Channel Description: Open Medicine Foundation (OMF) envisions improved health care for patients suffering from chronic complex diseases with collaboration between the patients, clinicians, and researchers. Our current focus is on ME/CFS (myalgic encephalomyelitis / chronic fatigue syndrome) and Long COVID, with the expectation that discoveries in these diseases will bring answers to other diseases that share similar symptoms (such as fibromyalgia, EDS, chronic Lyme disease). Our videos highlight the groundbreaking research OMF is funding and facilitating, as well as the research of several of our collaborators. Learn more at https://www.omf.ngo. With the help of our international OMF translators, some OMF videos have translated subtitles available. We gratefully thank our team for their support to help build and inform the international ME/CFS family. OMF is not responsible for these translations. <video> Assessing Neuroinflammatory Involvement in ME/CFS via MRI and PET Description: In this video, we present an exclusive interview with Jonas Bergquist, MD, PhD, from the OMF Collaborative Center at Uppsala, who shares insights on neuroinflammatory involvement in ME/CFS. Neuroinflammation and microglia activation are often implicated in ME/CFS, making it important to understand what happens in the central nervous system (CNS). Traditional methods of measuring activity in the CNS are invasive, often requiring a lumbar puncture to collect cerebrospinal fluid. Dr. Bergquist at the OMF Collaborative Center at Uppsala is conducting a study using novel MRI and PET imaging techniques to help understand what is happening in the CNS through non-invasive methods. This study has received IRB approval, which means it has transitioned from the “Study Design, IRB/Ethics Review” stage to the “Recruitment, Data Collection” stage of the research process. Watch this interview to learn more about this study directly from Dr. Bergquist. All gifts to OMF are TRIPLED until December 3, 2024! </video> <video> Computation Approaches: Traditional Data Analysis and Knowledge-Based Network Analysis Description: OMF’s Computational Research Center for Complex Diseases, directed by Wenzhong Xiao, PhD, performs data analysis for many of OMF’s clinical studies in addition to knowledge-based network analysis. The team develops tools useful for analyzing different data types, including AI natural language processing for electronic health records and algorithms for proteomics. Their knowledge-based network analysis approach pulls together results from separate studies and those conducted on similar diseases to help guide future research directions. The majority of the computation team’s work lies in the “Data Analysis” stage of the research process. 🎥 Watch this interview with Dr. Wenzhong Xiao to dive deeper into their groundbreaking research! </video> <video> Sally's Journey with ME/CFS: Personal Story & Fundraising for Research Description: Join Sally as she shares her journey with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), a life-altering disease that began unexpectedly over a decade ago during a holiday in Noosa, Australia. At the time, Sally was enjoying an active life in Mt Maunganui, New Zealand, managing a business with her husband. She recounts the sudden onset of symptoms, from sore ankles to severe pain, muscle spasms, and sleepless nights, which marked the beginning of her ME/CFS journey. Despite enduring severe symptoms for 18 months and facing ongoing challenges, Sally now feels she is at about 85% of her former self. She discusses the difficulties of getting a diagnosis and her journey to finding proper medical support. Discover how Sally is making a difference through Coppered®, a signature jewelry initiative supporting ME/CFS research. Named for its connection to copper, a vital element in both jewelry and health, Coppered® donates 100% of profits directly to research. Join Sally in raising awareness and supporting this important cause. Learn more about Sally's story and Coppered® at www.coppered.nz. Coppered is currently only available in NZ, Australia, and the USA. </video> <video> Neutrophil Assessment Platform: Dr. Ron Davis Shares Insights Description: Neutrophils are an important part of the innate immune system, which circulate in the bloodstream trying to identify and clear infections. They are traditionally quite challenging to study as they can’t be frozen and are easily activated during analysis. Neutrophils may provide interesting insight into ME/CFS, however, so Ron Davis, PhD and his team at the ME/CFS Collaborative Center at Stanford University have developed a new method for isolating and studying neutrophils. In this interview, Dr. Davis explains the Neutrophil Assessment Platform project and its potential impact on understanding ME/CFS. It's Giving Tuesday, and TODAY is the final day of our Triple Giving November campaign! There are just a few hours left to make your donation count—your gift will be tripled, helping to fund cutting-edge research into ME/CFS and Long COVID, including innovative projects like the Neutrophil Assessment Platform. Please consider making a gift to support innovative research projects like this one. </video> <video> Linking Brain Blood Flow, Neuroinflammation, Metabolism, and Hormones in ME, POTS, and Long COVID Description: Neuroinflammation, altered cerebral blood, and dysregulated hormones have all been separately observed in ME/CFS in prior research. Dr. Armstrong and his team at OMF’s Melbourne ME/CFS Collaboration have designed a study to examine the link between these three observations in people with ME/CFS, Long COVID, and POTS. The study will use MRI and PET imaging, blood draws, and surveys to characterize neuroinflammation, cerebral blood flow, and hormone levels. The project is currently under ethics review and therefore in the “Study Design, IRB/Ethics Review” stage. Learn more about this study directly from Christopher Armstrong, PhD, in this insightful interview. </video> <video> Tracking Hormonal Fluctuations in ME/CFS and Long COVID | Melbourne ME/CFS Collaboration Description: Join us for an exclusive insight into ME/CFS research with the Melbourne ME/CFS Collaboration's latest video! In this enlightening discussion, Dr. Natalie Thomas and Dr. Christopher Armstrong, Director of the OMF's Melbourne ME/CFS Collaboration, shed light on the profound influence of hormones on ME/CFS and Long COVID (LC). Explore the intricate interplay between hormone fluctuations and disease severity as Dr. Thomas dives deep into the MELLOW project. Discover how cutting-edge technology allows participants to track their hormone levels at home, revolutionizing our understanding of ME/CFS. </video> <video> Stand With Millie Today Description: Stand with Millie and millions suffering from ME/CFS. Right now, every dollar you give to Open Medicine Foundation is TRIPLED! Give today 👉 www.omf.ngo! Your support fuels critical research, bringing hope to those facing relentless challenges. Give today 👉 www.omf.ngo! </video> <video> Exclusive Interview with Ron Davis & Janet Dafoe! Description: We’re thrilled to bring you the latest insights into ME/CFS research through an exclusive interview led by advocate and caregiver Janet Dafoe, Ph.D. Today, Ron Davis, Ph.D., OMF Scientific Advisory Board Director, sits down to discuss his most recent publication: “Catalytic Antibodies May Contribute to Demyelination in Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome.” </video> <video> Personalised Treatment Trials: Monitoring and Improving the Connection of Treatments to Patients Description: The Melbourne ME/CFS Collaboration is conducting a study to closely watch how different treatments affect ME/CFS and Long COVID patients, using a very tailored approach. The team will collect samples from patients before, during, and after their treatment to see what biological changes happen and how these relate to whether they feel better or not. This method will help the researchers figure out which treatments work, why they work, and who they work best for. The team plans to study 200 patients over three years. Each patient will be part of the study for about 3 to 4 months, during which they will try 2 to 3 different treatments. This includes three visits to the clinic and involves analysing many samples they provide, like blood and urine. This large collection of data from all the patients will help the researchers make better predictions about which treatments are most likely to help others in the future. Watch this video to learn more about this study from Chris Armstrong, PhD, Director of the Melbourne ME/CFS Collaboration. </video> <video> Conversation with Dr. David Systrom on OMF's First Clinical Trial Description: Today Dr. David Systrom sits down to chat about OMF's first clinical trial, The Life Improvement Trial (LIFT). This clinical treatment trial is a major step towards understanding and treating Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) more effectively. What is The LIFT? Conducted under the direction of David Systrom, MD, Director of our Harvard Collaboration and Jonas Bergquist, MD, PhD, OMF’s Chief Medical Officer and Director of the Uppsala University Collaboration, The LIFT is a randomized, double-blind placebo trial that will investigate two particular drugs: Pyridostigmine (commonly known as Mestinon) and low-dose naltrexone (LDN) separately and together as a combination. Dr. Systrom speaks more on trial setup, expected timelines of the trial, why this is an important first step, and more. </video> <video> Exclusive Interview: Fran Haddock's Journey with ME/CFS & Long COVID Description: Discover the powerful story of Fran Haddock, a passionate advocate for ME/CFS, chronic illness, environmental, and social justice causes. Fran’s profound six-year journey with ME/CFS took a significant turn after a COVID-19 infection, escalating her symptoms to severe. In this exclusive interview, Fran opens up about her personal journey, shedding light on her advocacy efforts and the challenges faced by the ME/CFS and Long COVID community. Focused on raising awareness and offering support, Fran shares her insights and experiences, empowering others through her Instagram account: @franhaddock_. </video> <video> Research Updates from the Melbourne ME/CFS Collaboration Description: Dr. Chris Armstrong and Dr. David Fineberg chat about two upcoming research projects at the OMF supported Melbourne ME/CFS Collaboration: Saline Infusion for ME/CFS, POTS, Long COVID & Trialing Food on ME/CFS Patients. Food and saline infusions are both known to have an impact on ME/CFS symptoms. The Melbourne ME/CFS Collaboration aims to identify responses to different foods using objective measures, which may also prove useful in future trials. The team will also try to understand the impact of saline infusions to identify a rescue treatment for patients. Listen to this video to hear about both of these studies from the investigators, David Fineberg, MBBS, FRACGP, DCH, and Christopher Armstrong, PhD. </video> <video> A Muscle Biopsy Study to Understand the Molecular Mechanisms of PEM Description: Post-exertional malaise (PEM) is a characteristic feature of ME/CFS that is also a requirement for diagnosis. As a debilitating symptom, it’s important to understand what drives PEM so we can develop treatments that will alleviate or eliminate crashes. Dr. Systrom, the Director of The Ronald G. Tompkins Harvard ME/CFS Collaboration, has designed a study to do just that. In this interview, learn more about the muscle biopsy study to understand the molecular mechanisms of PEM directly from Dr. David Systrom. Support our research! During OMF's annual Triple Giving November campaign, all donations to OMF will be tripled from November 1 to December 3, 2024. Your generosity can make a significant impact! </video> <video> Deep Proteome and Metabolome Profiling to Decode Myalgic Encephalomyelitis (DOMINO-ME) Description: Join us for an interview with Alain Moreau, PhD, Director of the OMF Collaborative Center at Montreal. In this insightful discussion, Dr. Moreau shares details about his study on deep proteome and metabolome profiling to decode myalgic encephalomyelitis (DOMINO-ME). This study is designed on the principles that we can illustrate differences in patients at the molecular level and use these proteins and metabolites to enable precision medicine for better treatment of each person. The DOMINO-ME study utilizes a stress test to explore changes in the blood—including proteins, metabolites, and miRNA production—before, during, and after an episode of post-exertional malaise (PEM). This longitudinal look at molecular markers allows the study team to identify changes that specifically correlate with PEM, which may ultimately lead to a better understanding of how to reduce or eliminate crashes. In addition to evaluating changes in molecular markers after provocation, these markers are being correlated with each participant’s physiology or symptoms (e.g., orthostatic intolerance). In this way, the study team may be able to subtype patients to help identify different treatments that would work better for different subtypes. The molecular markers would then also be used to monitor response to each drug. Importantly, DOMINO-ME is designed to include severe, housebound patients who are unable to come into a clinic. Ultimately, findings from this study might therefore be translatable to more ME/CFS patients. Watch this interview to learn more about this study. Remember – from November 1 to December 3, your donations to OMF are tripled. </video> <video> Dr. Jonas Bergquist, OMF Chief Medical Officer, Talks OMF's First Clinical Trial Description: Today Dr. Jonas Bergquist sits down to chat about OMF's first clinical trial, The Life Improvement Trial (LIFT). This clinical treatment trial is a major step towards understanding and treating Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Long COVID more effectively. What is The LIFT? Conducted under the direction of David Systrom, MD, Director of our Harvard Collaboration and Jonas Bergquist, MD, PhD, OMF’s Chief Medical Officer and Director of the Uppsala University Collaboration, The LIFT is a randomized, double-blind placebo trial that will investigate two particular drugs: Pyridostigmine (commonly known as Mestinon) and low-dose naltrexone (LDN) separately and together as a combination. Dr. Bergquist speaks more on trial setup, expected timelines of the trial, why this is an important first step, and more. </video>

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Open Medicine Foundation (OMF) envisions improved health care for patients suffering from chronic complex diseases with collaboration between the patients, clinicians, and researchers. Our current focus is on ME/CFS (myalgic encephalomyelitis / chronic fatigue syndrome) and Long COVID, with the expectation that discoveries in these diseases will bring answers to other diseases that share similar symptoms (such as fibromyalgia, EDS, chronic Lyme disease).

Our videos highlight the groundbreaking research OMF is funding and facilitating, as well as the research of several of our collaborators. Learn more at https://www.omf.ngo.

With the help of our international OMF translators, some OMF videos have translated subtitles available. We gratefully thank our team for their support to help build and inform the international ME/CFS family. OMF is not responsible for these translations.

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