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, Ehlers Danlos (EDS), Fibromyalgia, POTS, MCAS, Chronic Lyme, 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 @visible.health
Episodes
Dr Peter Rowe is a leading voice for adolescents and young people with Ehlers Danlos Syndrome (EDS) and Fatigue-related conditions. An expert in orthostatic intolerance (OI), which is prevalent in nearly 100% of his patients, he believes that these conditions are treatable and he can move patients from bed-bound to regaining a decent quality of life using existing techniques.
He is director of the chronic fatigue clinic at Johns H...
Amy Mooney’s aim is to improve the quality of life for her patients. She is an occupational therapist specialising in the treatment of conditions that cause post-exertional malaise (PEM) and their comorbidities – working with patients with ME/CFS, Long Covid, Ehlers Danlos, fibromyalgia, dysautonomia, POTS, and MCAS.
Operating from a place of huge empathy and understanding – she is also a mother of a child with these conditions –...
Dr. Kevin Tracey is a pioneer in understanding the molecular basis of inflammation, and identifying the way in which neurons control the immune system via the Vagus Nerve. A neurosurgeon, scientist and entrepreneur, he is CEO of Feinstein Institutes, New York, where they bridge neuroscience, molecular biology and biomedical engineering. His lab’s discoveries led to the first clinical trials in neuromodulating devices paving the way...
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 Co...
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.
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 som...
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 Collabo...
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.
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...
A new clinical trial is underway to test a monoclonal antibody as a treatment for Long Covid.
In this week’s episode Emily Kate Stephens sits down with Dr Nancy Klimas at Nova Southeastern University (NSU), Florida, to discuss the trial alongside the groundbreaking research and integrative care, that is taking place at the Institute for Neuro-Immune Medicine, looking at Long Covid, ME/CFS and other complex conditions.
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...
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 cond...
The U.S.A.’s Centre for Disease Control (C.D.C) ME/CFS program has been working for decades to deepen our understanding of the condition. Their Multi-site Clinical Assessment of ME/CFS (MCAM) study, conducted across seven specialized clinics in the U.S. from 2012 to 2020, provides valuable data that forms the foundation for ongoing research.
Dr Elizabeth Unger, chief of Chronic Viral Diseases Branch, and epidemiologists Yang Chen ...
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 al...
When Suzy Bolt developed Long Covid in 2020 she searched for ways to understand her condition and began to create an online community of like-minded people traversing similar health situations. From her dark bedroom she found many others looking for answers, validation and ideas to help them navigate their illnesses, and from this she started to develop her holistic program.
Drawing on her background in counselling, yoga and neuro-...
When Suzy Bolt developed Long Covid in 2020 she searched for ways to understand her condition and began to create an online community of like-minded people traversing similar health situations. From her dark bedroom she found many others looking for answers, validation and ideas to help them navigate their illnesses, and from this she started to develop her holistic program.
Drawing on her background in counselling, yoga and neuro-...
Dr. Michael VanElzakker’s mission is to identify the individual drivers of post-viral illnesses. “How do you find something when you don’t know what you’re looking for?” he asks, believing that COVID-19, whilst a disaster for humanity, is giving us the opportunity to establish practises to identify those unknowns and establish more unbiased research methodologies.
Whilst ME/CFS encompasses huge numbers of people who have a shared e...
Arman Fesharaki-Zadeh is a behavioural neurologist and a neuropscychiatrist whose primary focus has been treating patients with cognitive deficits – from Alzheimer’s to Traumatic Brain Injury (TBI). Since 2020 a considerable portion of his clinic at Yale Medicine have been Long Covid patients and he noticed similarities in symptoms with post-concussive syndrome and other neuroinflammatory conditions.
Working with Professor Amy Arn...
Amy Arnsten, PhD, is a Professor of both Neuroscience and Psychology at Yale University, where she runs her own lab which studies and teaches about the brain’s higher cortical circuits and their molecular regulation.
In this week’s episode we discuss Prof. Arnsten’s recent paper published in Biological Psychiatry looking at the impact of stress (both physical and mental) and inflammation on the prefrontal cortex, an area of the bra...
Lucinda Bateman, M.D. has been seeing patients, learning about, and educating about ME/CFS and fibromyalgia for decades. She is Chief Medical Officer of the Bateman Horne Center, Salt Lake City, whose mission is “improving access to informed health care for individuals with ME/CFS, Long COVID, and fibromyalgia by translating clinical expertise into medical education and research initiatives”.
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