Make Visible: Complex Chronic Illness Explored

In a change to our usual format, this week Emily Kate Stephens sits down with fellow journalist, podcaster and chronic illness sufferer, Gez Medinger to explore their personal anecdotes and discuss the strategies that have made a difference in the trajectory of their health. Between them, over the last five years of their illnesses, they have interviewed hundreds of experts to unravel the science and medical advancements in Long Covid and other energy-limiting conditions.  In this episode they discuss, reflect on and explore the ways in which they have applied all that they have learned to shape the course of their respective progress. In this, very personal, discussion they veer away from some of the hard science, despite their remarkable shared knowledge, and reveal how many of the softer, more holistic approaches to healing have made the biggest differences, not only in their journeys towards recovery, but in their outlooks on life. From fasting to finding acceptance, from psilocybin to breathwork, their discussions reveal that it does not seem to be drugs or medical intervention that has made the difference, rather nervous system regulation, simple grounding healthy habits, a slower pace and compassion that have really proved key tools.  Perhaps this is because medicine really does not yet have the answers, but this conversation gives hope that, despite this, there are techniques and practices that can contribute to an improvement in quality of life for those suffering from these illnesses. Gez Medinger is a science journalist and former filmmaker, author of The Long Covid Handbook and host of his own YouTube channel - Gez Medinger. Emily Kate Stephens is a broadcast journalist who now focuses on health and medical journalism, and hosts Make Visible every two weeks.  She is a TV producer and qualified breathwork practitioner. Both have had Long Covid since 13th March 2020.   Make Visible @visible_health @visible.health

Bateman Horne Center internist and paediatrician, Dr Melanie Hoppers, has always been driven to approach her patients’ treatment with a holistic strategy, combining first line medicines with lifestyle, diet, stress reduction and movement.  But in 2015, when her daughter became sick with ME/CFS, it became an even more personal mission to understand, treat and create frameworks to assist people with chronic illness. Under the guidance of Dr Lucinda Bateman, and drawing on the expertise of her colleagues at the Bateman Horne Center, Dr Hoppers has ploughed her energy into helping patients to understand their conditions and their bodies, employing FDA approved drugs with lifestyle measures to make gains in their health and mitigate crashes. In this week’s episode Dr Hoppers talks through her primary strategies for pacing and managing post-exertional malaise (PEM) to enable patients to regain some control over their illness.  Drawing on her personal experiences with her daughter, along with treating hundreds of people in-person and through telehealth, she shares her ideas and resources that people can use at home – from monitoring your morning heart rate, to documenting symptom flares and activities, this episode is packed full of real life strategies to help understand and monitor your illness, and advocate for yourself with healthcare professionals and family members. We also discuss the Bateman Horne Center’s Clinical Care Guide offering advice to patients and healthcare professionals in the diagnosis and management of ME/CFS, Long Covid, IACCs and the multiple co-morbidities that make these conditions inherently complex: Bateman Horne Center Clinical Care Guide Further BHC Resources for patients and professionals: Crash Survival Guide: practical strategies to manage PEM and prevent crashes Brief Educational videos: Diagnosing ME/CFS Post-Exertional Malaise Orthostatic Intolerance NASA Lean Test Instructions ER and Urgent Care Considerations for ME/CFS A Mother’s Perspective – Dr Melanie Hoppers advocating for children, and advice for other parents   Make Visible @visible_health @visible.health

Analysis of wearable data gathered from the Visible app found that symptoms in Long Covid and ME/CFS fluctuated considerably in-line with the menstrual cycle, in a new study from Imperial College (currently in pre-print). In this week’s episode Abigail Goodship, a biomedical scientist at Imperial College, responsible for scrutinizing the data from almost 4000 women, talks us through the findings of the study, which corroborates something which women have been anecdotally reporting for years, and gives us insights into how we might be able to manipulate hormones and work with our cycles to live a more balanced illness. The points at which the immune and endocrine systems interact are complex and multi-layered with the hypothalamus, pituitary glands and ovaries all playing different roles in the functioning of our cycles. Emily Kate Stephens and Abigail take it back to basics, discussing the hormones involved and the way in which they shape the menstrual cycle, before diving into what the research teaches us about symptom variability which tends to worsen in the pre-menstrual phase and improve around ovulation. Understanding the hormones at play at these points, and the impact they have on our immune systems, inflammation levels and pain perception will be key to using this information to develop helpful strategies and potential treatments. We discuss the potential implications of pregnancy, vaccination, contraception, menopause and HRT in Long Covid and ME/CFS, along with the role of hormones in autoimmune conditions, as areas that are ripe for more substantial research in this much under-researched area of menstrual health. Abigail Goodship is a first year PhD student in the Department of Metabolism, Digestion and Reproduction at Imperial College London. Under the supervision of Dr Viki Male and Dr Bryn Owen, Abigail is researching the fascinating intersection of immunology and reproductive endocrinology, with a focus on how the immune system influences the menstrual cycle. Her work combines laboratory techniques like cytokine assays and hormone profiling with big data analysis, aiming to better understand menstrual changes after vaccination and the impact of chronic immune dysregulation on reproductive health. Drawing on expertise across both biological and computational sciences, Abigail is dedicated to bridging disciplines to advance women’s health, with a focus on translating research into meaningful, real-world impact. Her work is funded by the Medical Research Council (grant number MR/W00710X/1). Further references from this conversation: Menstruation as an inflammatory event The effect of ovarian hormones on rheumatoid arthritis Oestrogen and Progesterone in rheumatoid conditions Oestrogen in COVID-19 HRT in actute COVID-19 Impact of COVID vaccines on fertility Menstrual cycle and COVID vaccination & retrospective analysis ---- Make Visible @visible_health @visible.health  

Linda Tannenbaum, the founder and CEO of the Open Medicine Foundation, discusses her mission to transform ME-CFS research and patient care. She highlights the organization’s collaboration with over 200 scientists across six global research centers. Tannenbaum dives into innovative studies like the LIFT trial for effective treatments, AI-powered biomarker discoveries, and the significant role of patient feedback in research. The conversation emphasizes the foundation's commitment to increasing awareness and finding a cure for chronic complex diseases.

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.   Make Visible @visible_health @visible.health

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.