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Make Visible: Understanding Complex Illness

Visible with Emily Kate Stephens

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The podcast 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, and more, we dive into the science of energy-limiting, complex illness. 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 ...
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Wearable Progression

Wearable Progression

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Wearable Progression is a podcast about all things wearables and running. We talk with technology experts, industry analysts, running coaches, professional runners and other interesting personalities to discuss everything from how wearables can help runners perform better, to what drives runners to run. This podcast is hosted by Kinematix. Kinematix has dedicated several years to developing the best technology to extract meaningful information about body movements during daily activities, ai ...
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The Trial Better Podcast is ERT’s best practices series for clinical trial research. In this series, we discuss the factors that determine a successful clinical trial. Topics we cover are patient engagement, data architecture, FDA guidelines, wearable devices and much more. With our expert guests, we explore how to address the many unseen obstacles of clinical research.
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Interactive Health Technologies uses wrist-based wearable PE heart rate monitors and assessment technology to support students from kindergarten through graduation. Through personalized learning during physical education and physical activity coupled with an innovative curriculum, we empower students to take ownership of their health and well-being while supporting teachers and administrators in measuring and connecting student outcomes between fitness, academic progress and social and emoti ...
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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 s…
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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…
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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…
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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-Immun…
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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 th…
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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 …
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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 Eli…
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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 r…
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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 de…
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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 de…
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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 researc…
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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-concus…
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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 (bo…
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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…
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In this week’s episode renowned cardiologist Dr. Boon Lim returns for Part 2 of the conversation with Emily Kate Stephens, presenting three clarifying analogies to represent a wider view of the impact of acute stress on the autonomic nervous system, and its role in complex chronic illness. Dr. Boon Lim uses the poem The Blind Man and the Elephant t…
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Director for the Center for Healthy Aging Research at the Rutgers Institute for Health, Dr William Hu is a cognitive neurologist: he studies and treats patients whose thinking is affected by disease. Typically Dr Hu was dealing with Alzheimer's and related dementias in patients who were cognitively ageing whilst otherwise healthy, and those whose c…
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Cardiologist Dr Boon Lim describes himself as an electrician of the heart. Extremely experienced in surgically repairing heart rhythms, he is also an expert in treating Postural Orthostatic Tachycardia Syndrome (POTS) and related autonomic conditions. His approach to the diagnosis and treatment of both the symptoms and pathophysiology of these diso…
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The Patient-Led Research Collaborative (PLRC) are a group of patient researchers who aim to facilitate patient-led research into infection-associated chronic conditions. Since their inception they have published numerous papers and articles including a complete review of the Long Covid findings in January 2023 in Nature, an article on designing cli…
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Introducing Make Visible, the podcast shining a light on complex chronic illness. Join us every two weeks as journalist Emily Kate Stephens uses her experience of living with an energy limiting condition to bring us the latest research and insights from the world’s leading experts, scientists and healthcare professionals. Including ME/CFS, Long Cov…
  continue reading
 
Tell the audience a little bit about yourself. I’m currently at TriNetX as the Senior Vice President of Clinical Science and Operations, but I’ve been in the clinical and life sciences industry for 22 years. Throughout my experience, I realized a big piece missing in using data to better clinical research was patient-level data. About five and a ha…
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Tell us about your experience. After I finished medical school/neurology training, I started on faculty at Indiana University, School of Medicine in the neurology department. I ran a few clinical trials during my time there and became increasingly interested in clinical trial design. Beginning in 1998, I went to work at Eli Lilly and Co. where I fo…
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To start off, why don’t you tell us about your experience in the clinical research field and a little bit about yourself. I have had 30 years of experience as an observer of the clinical research enterprise. First, my involvement in management consulting; then I started a publishing company called Center Watch which captured a lot of data and obser…
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Tell us a little bit about yourself and 1nHealth. I’m kind of a cross between a life science veteran and an e-commerce veteran. I created 1nHealth based on those philosophies to answer the question, “how do you use compelling marketing to incite individuals to take action?” At 1nHealth, we are putting an advertising catalyst in front of individuals…
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Jim, tell us a little bit about yourself and your work at ACRP. I started my career at Eli Lilly for 24 years before moving to Quintiles, now known as IQVIA, for 5 years. After spending the following five years consulting, I became the executive director for ACRP. ACRP recently released some data on the state of the clinical trial workforce. I want…
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Fabian, tell us a little bit about yourself and your experience. I’m Colombian, but I was raised in northern Virginia. I got a bilingual medical training and moved on to research after my residency. I soon realized I wasn’t keen on the monotony of regular medical practice. I ended up moving into clinical trials and research and have been in the ind…
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Fabian, tell us a little bit about yourself and your experience. I’m Colombian, but I was raised in northern Virginia. I got a bilingual medical training and moved on to research after my residency. I soon realized I wasn’t keen on the monotony of regular medical practice. I ended up moving into clinical trials and research and have been in the ind…
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Tell us about TrialScope and your experience. I am the Vice President of Patient Engagement at TrialScope. I used to work at the Michael J. Fox Foundation for Parkinson’s Research and also had my own company, Clinical Trial Connect, before it was acquired by TrialScope last year. I’ve been working in the clinical trial recruitment world for the pas…
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Speaking from a general safety perspective, as well as a cardiac safety perspective, what challenges have you observed in clinical trials resulting from the COVID-19 pandemic? [3:07] I speak for myself and others, no one trained us for this and we had to quickly react. We want to ensure the safety of the participant as well as making sure the data …
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How did you end up in patient advocacy? At the time of her first diagnosis, Deb was a computer company executive. Along with her husband (also a cancer survivor), she got involved with an oncology patient advocacy group. This was in the early 1990s when very little was known about effective cancer treatments, and she felt that this was important to…
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Introduction [00:55] Dr. David Albert of AliveCor explains how patient-collected data can solve some of the problems facing clinical trials during the COVID-19 pandemic, as well as the long-term outlook on changes in data collection for clinical research. What is the AliveCor KardiaMobile 6L and how does it work? [01:43] The AliveCor KardiaMobile 6…
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Introduction [00:55] Nadeeka Dias and Chris Watson from ERT discuss the race for a coronavirus vaccine and take a deeper dive into how sponsors and CROs can use technology to address the unique challenges of vaccine trials. What are the specific challenges sponsors face in trying to create a COVID-19 vaccine? [02:10] The real challenge is that the …
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Introduction We welcome Nicholas Conn from Heart Health Intelligence and Jean-Phillippe Couderc from VPG Medical as he joins Trial Better to discuss passive health monitoring and the smart toilet seat. What is the Heart Seat and what does it do? The Heart Seat is a cardiovascular monitoring system integrated into a toilet seat. This allows you to m…
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Intro Dawn Patterson, ERT Director of Respiratory Solutions, is joined by Kevin McCarthy, ERT Clinical Overread Specialist and member of the ATS/ERS 2019 Spirometry Update Task Force. They’ll explore the implications of the October 2019 ATS/ERS update to their pulmonary function testing guidance. ERT was the only data and technology vendor involved…
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What trends have you seen in respiratory in 2019? In previous years, there were a number of blockbuster drugs developed for conditions like asthma and COPD. However, these drugs are beginning to move off-patent, so the industry is beginning to see studies for generics taking place. Because these blockbuster drugs are still on the market, sponsors a…
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What trends have you seen in imaging in 2019? One of the biggest trends has been an increase in demand for imaging over the last year as more and more trials have begun to require imaging as a primary endpoint. This has always been common in oncology studies in particular, but not the industry is starting to use imaging as a primary endpoint in oth…
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What trends have you seen in eCOA in 2019? There’s been a shift in the regulatory landscape over the past year, shaped by an ongoing effort since the launch of 21st Century Cures Act to update patient-centered outcomes. The FDA has also taken on the task of updating guidance to industry published in 2009 on the use of PROs, culminating in the draft…
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What have you seen and experienced in cardiac safety in 2019? Cardiac safety is typically seen as a very stable area. However, in 2019, there was a lot of evolution as sponsors began to look for ways to reduce patient burden and find real-world cardiac evidence. Enter wearables: advancements in these convenient devices have made it possible to trac…
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Introduction [00:50] We welcome Jean-Phillippe Couderc from VPG Medical as he joins Trial Better to discuss passive health monitoring and VPG Medical’s technology, HealthKam. What is passive health monitoring? [02:02] Passive health monitoring, or opportunistic monitoring, embeds sensors that measure data into technologies or devices that are alrea…
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What is a micropayment? [02:16] Micropayments are a small financial transaction. The threshold for what is considered a micropayment can vary based on industry, geographic location, and other factors. In clinical research, micropayments can influence and encourage patients to take complete any actions outside of a clinical visit that may be necessa…
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Introduction [00:42] Learn about best practices for patient recruitment, one of the biggest concerns in the clinical trial industry. We’ll discuss the importance of precision recruitment and site-follow up, as well as patient recruitment challenges like diagnosis, eligibility and diversity. What’s the number one problem with clinical trials? [03:03…
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Introduction [00:20] Phil Lake and Dr. Kai Michael-Beeh examine the steps sponsors and study teams can take to improve data quality and reduce data variability in respiratory trials. They also discuss the innovations and trends they expect to see in the industry in the future. How can sponsors and the pharma industry overcome unacceptable data vari…
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Introduction [00:45] Ken Faulkner and Katarina Krosback explore the potential benefits and pitfalls of Bring Your Own Device (BYOD) in eCOA clinical trials, as well as the current regulatory perspective. In this episode we discuss the future hold of BYOD, the value of patients using their own devices and the technology needed for BYOD trials. What …
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Patricia Castellano and Emily Olsson explore how sites can benefit from developing a stronger relationship with their ABPM device vendors. They also address strategies for successful repeat ABPM sessions when a patient is non-compliant, and how ABPM achieves a type of holistic data not possible with other BP measurement methods. Introduction [00:37…
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Introduction [00:31] Patricia Castellano, Senior Director of Product Management at ERT, is joined by Emily Olsson, CCRP, from the University of North Carolina Chapel Hill for an in-depth look at the keys to implementing a successful ABPM protocol in a cardiac safety tril. Enhancing Data Quality and Value with Hands-On Training [2:31] Hands-on train…
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Drew Bustos, Senior Director of Business Intelligence Products, is joined by Dr. Santikary, Vice President and Global Chief Data Officer at ERT, for a discussion of the role of modern data architecture. Clinical trial sponsors and CROs are facing increasing numbers of complex data integration and quality challenges. Are you struggling to keep up wi…
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Introduction Vivienne de Walle, Co-Founder of PT&R - a dedicated clinical trial site in the Netherlands, is joined by Chris Porter, VP of Marketing & Digital Strategy, ERT for a discussion about the importance of involving clinical sites in the design of clinical studies. Sites are on the frontline of your clinical trials and as such, bring with th…
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Introduction Brett Hoover, Product Management team lead for ERT’s imaging product line, is joined by Amit Vasanji, Chief Technology Officer of imaging at ERT, for a look at imaging trends, strategies, and best practices in the clinical trial industry. How can using imaging effectively reduce cost? What impact will innovative imaging approaches have…
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Hampstead Middle School teacher Kate Muskrat explains her Fitness Friday H.I.I.T. lesson. A PE teacher by trade, Muskrat also teaches health classes at Hampstead. Worried her students weren't getting enough physical activity during the school day, she created a high-intensity interval training workout for her students to take part in each Friday.…
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