by Visible with Emily Kate Stephens
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 illness, visit our website at makevisible.com or follow us on Instagram at visible.health.
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Publishing Since
9/11/2024
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March 27, 2025
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 and Elizabeth Fall, have contributed to numerous studies exploring various aspects of ME/CFS, from cognitive impacts to looking for biomarkers. In this episode, we focus on their latest paper, which examines the prevalence of Chronic Overlapping Pain Conditions (COPCs) that occur in ME/CFS. Three-quarters of ME/CFS patients suffer from COPCs (defined as: Chronic low back pain; Chronic migraine/Headache; Fibromyaligia; Endometriosis; Interstitial cystitis/Irritable bladder; Irritable bowel syndrome (IBS); Temporomandibular disorder (TMD); Vulvodynia) with women being more likely to experience at least one of these co-occurring conditions. The understanding of why these are so prevalent in ME/CFS is the next piece of the puzzle. A large portion of this team’s work is educating patients and carers along with healthcare workers. They are immensely proud of their resources such as their patient tool kit, management strategies and disability advice, tailored to helping patients advocate for themselves and their family members to receive appropriate diagnosis, treatment and care. Sitting alongside this is a section for healthcare providers where they present a clinical overview to assist in the diagnosis and care, with a toolkit containing many educational and reference resources. The MCAM data and biospecimens are also available (via application) to other investigators to maximise the impact of this longitudinal study. Make Visible @visible_health @visible.health
February 28, 2025
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
February 11, 2025
Suzy Bolt’s wellbeing community programmes have enabled more than 5000 people living with energy limiting conditions to improve their health. 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 programmes. Drawing on her experience as an NLP practioner, yoga teacher and counsellor, coupled with her own illness, Suzy Bolt created an online platform in September 2020, for people suffering from post-viral and other complex chronic illnesses. The Rest, Repair, Recover programme, enables patients to seek support and find community whilst beginning to rehabilitate body and mind without having to leave the house. The programme draws on the expertise of practioners with lived experience of these energy-limiting conditions, creating an interactive framework of movement, breathwork, creativity and rest to try and regulate the autonomic nervous system, enabling people out of flight / flight mode and starting on the road to believing that recovery is possible. And then, for those for whom the Rest, Repair, Recover programme or the idea of trying to balance the autonomic nervous system, has proved effective but are looking to further develop this understanding, Suzy Bolt and her team offer the Fern programme. Working in smaller groups with a more (virtual!) hands-on, individualised approach, they use a coaching-based method to recondition mind, body and soul. In this conversation - spilt across two episodes - Bolt describes the cascade effect of improving small elements of ones life, finding joy, seeking community, treating with kindness, and how it impacts our nervous systems, immune systems and ability to feel better. In this, the second part of the conversation, we discuss the kindness, creativity and distraction from symptoms; along with nutrition, celebrating progress and the effect that these programmes have had on people’s lives. Over the past five years Suzy Bolt has become a mainstay for those looking to improve their condition through a holistic approach. In a recent survey of those who have attended her programmes, the overwhelming majority said that it improved their overall energy levels, improved their mood, alleviated some of their medical concerns and gave people confidence to manage their symptoms. She is regularly consulted and recommended by the NHS as an additional strand to medical help that people may be being offered. Her approach endeavours to address autonomic dysfunction as a way to create optimum environment in which people can start to feel improvements in their health. Make Visible @visible_health @visible.health
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