Make Visible: Complex Chronic Illness Explored

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.

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

In this insightful conversation, Suzy Bolt, a Long Covid warrior turned community builder, shares her journey of creating the Rest, Repair, Recover program. She discusses the importance of self-compassion, creativity, and nutrition in managing complex illnesses. Suzy highlights how small, positive changes can significantly impact health and well-being. Through shared experiences and community support, she emphasizes the transformative power of connection and joy in healing, proving that together we can navigate even the toughest journeys.

Suzy Bolt, a counsellor, yoga teacher, and NLP practitioner, discusses her journey with Long Covid and the importance of building an online community for those facing chronic illness. She shares insights on how isolation affects individuals and the transformative power of connection. Bolt highlights the role of small positive changes and self-compassion in improving overall well-being. The conversation delves into the interplay between mindset, personal history, and chronic conditions, emphasizing the importance of understanding and support in the healing process.

Dr. Michael VanElzakker is a Harvard neuroimmunologist and co-founder of The PolyBio Research Foundation, dedicated to unraveling post-viral illnesses. He discusses the importance of understanding individual drivers of conditions like ME/CFS amidst long COVID. VanElzakker emphasizes the need for holistic approaches to diagnose and treat these complex illnesses, exploring neuroinflammation, the immune-nervous system interplay, and advancements in unbiased research to improve patient care and diagnostics.

Dr. Arman Fesharaki-Zadeh, a behavioral neurologist at Yale, specializes in cognitive deficits and has been working extensively with Long Covid patients. He discusses a groundbreaking treatment protocol using guanfacine and N-acetylcysteine that shows promise in alleviating brain fog and emotional dysregulation. The conversation highlights the intersection of neurology and psychiatry, the need for empirical research, and the critical connections between brain health, sleep, and gut health. Fesharaki-Zadeh advocates for expanding access to effective treatments.

In a thought-provoking discussion, Yale's Prof. Amy Arnsten sheds light on the intricate relationship between stress, inflammation, and cognitive health. She reveals how chronic stress affects the prefrontal cortex, leading to issues like brain fog and emotional dysregulation. Prof. Arnsten also highlights the role of kynurenic acid, particularly in conditions like Long Covid, and shares insights on guanfacine, a drug with potential benefits for cognitive restoration. Her cutting-edge research offers hope for better understanding and treating mental health disorders.

Dr. Lucinda Bateman, a leading expert in ME/CFS, Long Covid, and fibromyalgia, shares her extensive knowledge gained from decades in patient care and research. She discusses advancements in understanding these conditions, emphasizing the importance of collaborative research and patient experiences. Dr. Bateman also highlights the emotional toll of chronic illness, the shift away from traditional therapies towards personalized care, and the need for better clinician education to improve outcomes for patients dealing with complex chronic conditions.

Dr. Boon Lim, a renowned cardiologist and electrophysiologist, returns to explore the autonomic nervous system's crucial role in chronic illness. He likens the body to a factory seeking an off-switch from Long Covid's stress. Using analogies like The Blind Man and the Elephant, he emphasizes the need for a holistic view of health. Dr. Lim discusses stress reduction techniques, including breathwork and mindfulness, backed by science, and highlights the importance of nurturing both mental and physical well-being to combat chronic stress.

Dr. William Hu, a cognitive neurologist at Rutgers Institute for Health, specializes in treating cognitive impairments, particularly in Long Covid. He discusses the physiological basis of brain fog, revealing physiological changes through brain imaging and cerebrospinal fluid analysis. His groundbreaking research identified markers of persistent immune activation in patients, linking it to cognitive decline. The conversation highlights implications for treatments and sheds light on the connection between immune responses and cognitive health in post-viral conditions.