#21 Living life with energy-limiting conditions - Personal wins & perspective, with Gez Medinger & Emily Kate Stephens
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.
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#20 Practical guide to pacing and managing Post Exertional Malaise (PEM) with Dr Melanie Hoppers, Bateman Horne Center
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
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#19 Female hormones and the immune system, with Abigail Goodship
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
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#18 Leading research, delivering hope: The Open Medicine Foundation’s mission with Linda Tannenbaum
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.
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#17 PEM: measuring the threshold and understanding the cause with Dr. Rob Wüst
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
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Über Make Visible: Complex Chronic Illness Explored
Shining a light on invisible illness.Emily Kate Stephens, journalist and Long Covid sufferer, discusses the latest research and insights with the world’s leading experts, scientists and healthcare professionals. Including ME/CFS, Long Covid, EDS, Fibromyalgia, POTS, IACCs and more, we dive into the science of energy-limiting, complex illness, whilst providing patients, caregivers and medical professionals with practical tools to diagnose, understand and manage their conditions.
Join us every two weeks.To find out more about the work that Visible is doing, using wearable technology to measure and manage complex chronic illness, visit our website at:
Make Visible
@visible_health
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