Make Visible: Understanding Complex Illness

The Open Medicine Foundation is the world’s largest non-profit aimed at diagnosing, treating and preventing complex chronic disease. This week, founder and CEO Linda Tannenbaum joins Emily Kate Stephens to discuss the OMF’s work, delivering collaborative research from some of the world’s leading scientists, and offering hope to millions. Now with six specialised centers operating out of leading institutions, from the ME/CFS Collaborative Research Center at Stanford to Harvard, to the University of Melbourne, Tannenbaum has overseen more than 68 projects to try and understand these life-changing conditions.  In today’s episode she explains the way in which the OMF was launched, in collaboration with the formidable Dr. Ron Davis, bringing together hundreds of scientists, across a huge range of specialities to try to create a multi-system framework to look at these multi-system diseases. And Tannenbaum discusses the details of the most recent studies and trials, including TREAT ME (patient-reported outcomes from 4,000+ participants), Bio Quest (AI-powered biomarker discovery), and the first OMF double blind placebo controlled trial LIFT – a groundbreaking study looking at the efficacy of LDN and Mestinon. From leveraging AI to hosting global research summits, the OMF is committed to bringing awareness, research and treatments to those suffering from chronic complex diseases, and whilst the ultimate goal is to find a cure for ME/CFS, in the interim they are working to improve the lives of patients through better understanding and management of the condition.   Make Visible @visible_health @visible.health

What is the threshold over which PEM is induced in chronic illness? This is a hugely important question for sufferers, and one for which Rob Wüst is trying to find an answer. Assistant Professor in Musculoskeletal Health and Physiology at the Vrije Universiteit Amsterdam, Dr. Rob Wüst is able to see the physiological impact of Long Covid and ME/CFS in skeletal muscle abnormalities. In his latest study (currently in preprint) he finds that “Skeletal muscle properties in long COVID and ME/CFS differ from those induced by bed rest”,  and the abnormalities that he observes in the muscles of this cohort of patients correlate with the Post-Exertional Malaise (PEM), autonomic dysfunction and wearable data that he gathered in another recent study. In this week’s episode Wüst explains to Emily Kate Stephens how he observed exercise-induced worsening of symptoms in almost half of Long Covid patients when they exceeded their ‘ventilatory threshold’ but the much of the time this is from everyday activities such as hanging the laundry or carrying the groceries.  But they discus He discusses the physiological clues emerging from exercise testing and muscle biopsies in patients when viewed alongside wearable data and expounds on the circulating theories on this, including mitochondrial dysfunction, local hypoxia, and ion channel abnormalities.  And he explores the parallels and distinctions between Long Covid and ME/CFS and why interdisciplinary collaboration is vital to unlock these complex, multi-systemic diseases. The Impact of Bedrest Study 2024 Skeletal muscle adaptations and PEM in LC 2024 Should we be careful with exercise in PEM in LC? 2025 Make Visible @visible_health @visible.health

This week’s episode takes us on an exploration of the exciting work coming out of M.I.T’s Biological Engineering teams into understanding infection-associated illnesses and the emerging field of menstruation science. Emily Kate Stephens is joined by Dr Michal Caspi Tal, Principal Scientist of the Tal Research Group and Associate Scientific Director at the Center for Gynepathology Research. She is responsible for innovative research seeking answers about the the overlap between infection, immune dysregulation, and chronic illness; alongside working to break menstrual taboos, creating a scientific framework for understanding the implications of the female reproductive system on our health and our sickness Her lab has launched MIT MAESTRO study, a groundbreaking research initiative using leading edge technology, aimed at uncovering the links between infection-associated illness, immune dysregulation and mitochondrial dysfunction, juxtaposing Long Covid against acute and Chronic Lyme. The team study the way in which pathogens interact with the immune system, genetics, and each other to create overlaps with POTS, MCAS, gynaecological conditions and connective tissue disorders such as hEDS. The Tal Research Group is working to bridge engineering and biology to fill critical research gaps— particularly around chronic illnesses such as endometriosis, acute and chronic Lyme disease, Long Covid & ME/CFS. Their work is developing predictive diagnostics and illness trajectory maps to help us understand who is at risk of developing infection-associated chronic conditions, and why. Make Visible @visible_health @visible.health

Dr. Nancy Klimas, Director at the Institute for Neuro-Immune Medicine, is a leading expert in chronic illness. In this discussion, she unveils a groundbreaking clinical trial testing a monoclonal antibody for Long Covid, which she believes could cure about 40% of patients. They also explore the use of AI in uncovering disease patterns, the critical impact of nutrition and restorative sleep, and how gender differences affect treatment strategies. Her insights reflect a blend of compassionate care and innovative science in tackling complex health issues.

Data gathered from wearable technology can warn of impending symptom exacerbation in complex chronic illness a new study has found. In this week’s episode Dr. David Putrino discusses the findings.  He, in collaboration with leading immunologists, microbiologists and data scientists, tracked data points from 5000 Visible app users (who enrolled in the study) to establish that HRV and resting heart rate can be used to predict a crash.  Analyzing more than 55,000 readings over 1000 days they were able to see changes in the autonomic nervous system of contributors using this biometric data.  The largest study of its kind, these findings have the potential to provide the basis for individualised care strategies for this enormous cohort of patients. Here we discuss the function and dysfunction of the autonomic nervous system.  Dr. Putrino gives us an overview of heart rate variability, the way in which it fluctuates, what its readings can determine about our health and ways in which these can be influenced. We talk through the power of breathwork including two of Dr Putrino’s studies – on resonant breathing and hypocapnia – showing the way in which breathing impacts our physiology but determining that we have innate power to influence our health. As Director of Rehabilitation Innovation Mount Sinai Health, Dr. Putrino‘s focus is on real-world solutions for this patient cohort. In a world where new drug approval takes 10 years and technologies in this field can take 17 years to reach market, his aim is to bring patients tangible treatments and protocols in a practical timeframe. Currently involved in clinical trials for rapamycin and vagal nerve stimulation, Dr. Putrino endeavours to re-purpose drugs and technologies that are already approved in other situations to create personalised strategies for this engaged cohort.   Make Visible @visible_health @visible.health

Dr. Theoharis Theoharides ‘The Mast Cell Master’ has been at the forefront of mast cell research for over 30 years. A renowned expert in allergy, neuroinflammation, and mast cell biology, his work centers on understanding the regulation of these critical immune cells. His extensive studies explore their fundamental role in the body, the mechanisms behind their activation and inhibition, and their involvement in a wide range of conditions—from asthma and eczema to neuroinflammatory disorders and complex chronic illnesses. In this week’s episode, we delve into the role of mast cells in complex chronic disease. Dr. Theoharides explains how mast cells are distributed throughout the body, the various stressors that can activate them, and how their activation may contribute to overlapping symptoms seen in conditions such as migraines and irritable bowel syndrome. The comparisons draw into question whether a degree of mast cell activation is co-morbid in many of these conditions, or indeed whether some of these conditions are a symptom of mast cell activation. He underscores the urgent need for better diagnostic tools, greater awareness within the medical community, and a broader, more integrative treatment strategy. This includes lifestyle interventions and the use of natural flavonoids, which have been proven to inhibit mast cell activity. Dr. Theoharides also discusses the ongoing challenges in securing research funding and the potential for integrative approaches to address complex conditions – thinking outside the box to treat patients individually, listening to their needs and treating accordingly – which is what he believes they are able to do with his team at NSU Dr. Theoharides is Executive Director, Center of Excellence for Neuroinflammation Research (CENIR) & Professor, Institute for Neuro-Immune Medicine at Nova Southeastern University.  Prior to this he spent four decades at Tufts University where he was Director of Molecular Immunopharmacology & Drug Discovery.

Dr. Elizabeth Unger, Chief of the Chronic Viral Diseases Branch at the CDC, and Yang Chen, an epidemiologist at the CDC, delve into groundbreaking research on ME/CFS and its intersection with Chronic Overlapping Pain Conditions (COPCs). They reveal that three-quarters of ME/CFS patients experience COPCs like fibromyalgia and chronic migraines, stressing the need for better education for healthcare providers. Their insights also pave the way for future studies aimed at improving diagnostics and treatment for chronic pain in individuals with ME/CFS.

In her latest paper Suzanne Vernon, PhD, Scientific Director at the Bateman Horne Center, reveals that ME/CFS prevalence is now 15 times higher than pre-pandemic estimates. The study, carried out by the RECOVER initiative, and published in the Journal of General Internal Medicine confirmed that ME/CFS has a 4.5% prevalence among those who did not recover from COVID-19, and forms the most severe subtype of Long Covid.  Whilst not all Long Covid patients will fulfil the criteria for ME/CFS, the ability to study the conditions in parallel and at the point at which they cross over is bringing us unprecedented insights into long term energy-limiting conditions.   In this week’s interview Dr Vernon highlights the challenges in identifying definitive biomarkers for ME/CFS due to its heterogeneity and the fact that there are multiple triggers, but explains how the longitudinal data gathered in the RECOVER study is making roads into understanding the pathogenesis and necessary treatments for ME/CFS.  This is due to one crucial factor: here we are presented with a huge group of ME/CFS patients who have developed the illness from one trigger, SARS-COV2. Whilst the findings are shocking, and the stark quantity of people with ME/CFS is rising dramatically, Dr Vernon is positive about the way in which we can optimize this moment in time, with the research attention and funding in place, to reveal what is causing ME/CFS and then go on to work out how it can be treated. Dr Vernon has more than 30 years’ experience in researching chronic illnesses, authoring hundreds of papers on the subject, working with the government and non-profits to move the needle in this research arena.  She is dedicated to understanding what drives conditions such as ME/CFS, whilst advocating for greater involvement amongst the scientific and medical communities.  Formerly the Scientific Director at  Solve ME/CFS Initiative, Dr Vernon is tireless in her bid to advance research, educate and improve care for those impacted by ME/CFS. Additional references from the episode: JAMA paper detailing clusters in Long Covid   Make Visible @visible_health @visible.health

In this insightful conversation, Suzy Bolt, a Long Covid warrior turned community builder, shares her journey of creating the Rest, Repair, Recover program. She discusses the importance of self-compassion, creativity, and nutrition in managing complex illnesses. Suzy highlights how small, positive changes can significantly impact health and well-being. Through shared experiences and community support, she emphasizes the transformative power of connection and joy in healing, proving that together we can navigate even the toughest journeys.

Suzy Bolt, a counsellor, yoga teacher, and NLP practitioner, discusses her journey with Long Covid and the importance of building an online community for those facing chronic illness. She shares insights on how isolation affects individuals and the transformative power of connection. Bolt highlights the role of small positive changes and self-compassion in improving overall well-being. The conversation delves into the interplay between mindset, personal history, and chronic conditions, emphasizing the importance of understanding and support in the healing process.