Make Visible: ME/CFS, Long Covid, POTS, EDS, Fibro & MCAS Explored

Bringing together research across Long Covid, myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), postural orthostatic tachycardia syndrome (POTS), Ehlers-Danlos syndrome (EDS) and other co-morbid conditions heralding faster, patient-specific treatment. Amy Rochlin’s mission stems from deeply personal understanding, but is driven by exceptional business sense.  As the CEO of The Complex Disorders Alliance (CODA), she is pushing to scale funding, research and treatments for patients. When her daughter became chronically sick overnight, at the age of 16, Amy was forced to learn about complex chronic disorders.  Shocked at the lack of effective help, she was inspired to turn her career in financial services and disease research to make a difference for patients like her daughter, joining founder Fidji Simo to lead CODA. CODA’s strategy hinges on the collaboration of the most prominent minds and organisations in the field, with the aim of helping patients as quickly as possible.  The operation is laser-focused on listening to the patient and validating their experience, whilst turning to precision medicine and AI to escalate funding, enhance research opportunity and drive change. In this episode we discuss: How CODA unites leading scientists, clinicians, charities and pharma to move faster together Why subtyping and precision medicine could mean the right treatment for the right patient CODA’s neuro-immune research portfolio Leading new research into craniocervical dysfunction (CCD) Collaborations in genomics, microclots, immune dysfunction and vagus nerve stimulation research Why patients belong at the heart of research If you live with Long Covid, ME/CFS, POTS, EDS or another complex chronic illness, and wonder whether anyone is joining the dots, this episode shows that serious people, serious science and serious investment are coming together on your behalf. By bringing together the research understandings and expert minds of people including Mikki Tal, Nancy Klimas, Resia Pretorius and Kevin Tracey, and organisations such as PrecisionLife, the OMF, and Schmidt Initiative for Long Covid, CODA creates a collaborative that crosses specialties and conditions to move towards treatment options at greater speed. Interested in taking part or sharing feedback on Make Visible?  Please click here. Find it easier to read than listen? Download the transcript here. Make Visible @visible.health [email protected]

PrecisionLife are cracking the genetic code in complex chronic illness with their latest research in ME/CFS (myalgic encephalomyelitis / chronic fatigue syndrome) and Long Covid. Through large-scale studies in with DecodeME, the LOCOME Project, Sano Genetics' Gold dataset, and the All of Us research programme, they have identified hundreds of genes associated with Long COVID and ME/CFS.  They believe this genetic data reveals the different patient phenotypes within these conditions, and how each might be treated. This week, PrecisionLife's CEO Steve Gardner shares the work that they have been doing. He discusses why these findings mark a transformational point in our understanding, diagnosis, and treatment of complex chronic illness. He explains: What they have identified in the genetics of ME/CFS and Long COVID patients The implications of the genetic overlaps and differences between the two conditions Why stratification is essential in clinical trial design and treatment How this genetic understanding could shape targeted treatment The 42 repurposed drug candidates that they have identified so far Steve Gardner believes this work has created a profound shift in our understanding of ME/CFS, Long COVID and has potential across many complex chronic conditions. Collaborating with key organisations including the Complex Disorders Alliance (CODA), Action for ME, Innovate UK, and the Metrodora Institute, PrecisionLife is using precision medicine to individualise treatment and build new pipelines and pathways for ME/CFS and Long COVID patients.   View PrecisionLife’s work into Long Covid and ME/CFS here. Complete the survey to register your interest in Post COVID DNA Wellness Report here. View the Patient Recap of the ISLC-PAIS Conference here.   Interested in taking part or sharing feedback on Make Visible?  Please click here. Find it easier to read than listen? Download the transcript here. Make Visible @visible.health [email protected]  

REVIEW: with Nancy Klimas, Peter Rowe, Lucinda Bateman, Todd Davenport & Theoharis Theoharides For decades, people living with ME/CFS, Long Covid, fibromyalgia, EDS and other complex chronic illnesses have faced too few answers. But research is giving us a clearer picture. As researchers uncover more about these conditions, we're beginning to see how the same underlying biological processes — from disrupted homeostasis to mast cell activation — can appear across very different diagnoses. For Episode 40 of Make Visible, we've revisited some of our most illuminating conversations from across the series, drawing on decades of scientific research and clinical experience to explore the recurring themes connecting these conditions. Our guests include: Nancy Klimas M.D. on disrupted homeostasis and why ME/CFS, Long Covid and related conditions often need to be approached across multiple body systems Peter Rowe M.D. on orthostatic intolerance, blood flow and the links between hypermobility, EDS and ME/CFS. Lucinda Bateman M.D. on chronic pain, overlapping conditions and the importance of identifying and treating comorbidities in in ME/CFS, Long Covid and fibromyalgia. Todd Davenport DPT on post-exertional malaise (PEM) and what exercise physiology research has revealed about the body’s response to exertion. Dr. Theoharis Theoharides on mast cell activation (MCAS) and the range of symptoms it may help explain. Emily Kate Stephens and Gez Medinger reflect on what this science means for people living with complex chronic illness. Together, these conversations paint a hopeful picture: as our understanding of ME/CFS, Long Covid, EDS, MCAS and related conditions grows, so too does our ability to manage symptoms and improve care. Nancy Klimas M.D. is Director of the Institute for Neuro-Immune Medicine at NSU, and a leading voice in translational research focused on chronic illness, Gulf War Syndrome, and Long Covid. With decades of experience in immunology and clinical science, Dr. Klimas is a champion for an integrative, personalized approach to patient care. Listen to the full interview in Episode 15. Peter Rowe M.D. is director of the chronic fatigue clinic at Johns Hopkins Children’s Center where he diagnoses and helps young people with ME/CFS, EDS, Long Covid and related disorders. Dr Rowe was the first to identify the cross-over of EDS, OI and ME/CFS in 1998 and is a leading voice for adolescents and young people with Ehlers Danlos Syndrome (EDS) and Fatigue-related conditions. Listen to the full interview in Episode 24. Lucinda Bateman, M.D. is founder and 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”. Dr. Bateman was one of the researchers responsible for the National Academy of Medicine’s 2015 report on ME/CFS. Listen to the full interview in Episode 5. Todd Davenport is Professor and Chair of the Doctor of Physical Therapy (DPT) Program at University of the Pacific.  His clinical and academic interests as a physical therapist and exercise scientist revolve around complex chronic conditions (commonly preceded by an infection) such as ME/CFS (myalgic encephalomyelitis), chronic fatigue syndromes and Long Covid, working to understand the systems-level pathophysiology of post-exertional malaise. Listen to the full interview in Episode 26. Dr. Theoharis Theoharides is Executive Director, Center of Excellence for Neuroinflammation Research (CENIR) & Professor, Institute for Neuro-Immune Medicine at Nova Southeastern University. Theoharides, ‘The Mast Cell Master’ is Adjunct Professor of Immunology, at Tufts School of Medicine where he was Professor and Director of Molecular Immunopharmacology & Drug Discovery and has been at the forefront of mast cell research for over 30 years. Listen to the full interview in Episode 13.   Interested in taking part or sharing feedback on Make Visible?  Please click here. Make Visible @visible.health [email protected]

STORIES: ME/CFS and EDS left Lizzie bedbound for eight years - a mother's fight for answers and a daughter's fight to reclaim independence. Lizzie Mooney became chronically sick with ME/CFS and Ehlers-Danlos syndrome (EDS) at just nine years old. By 11 years old she was bedbound. She would spend the next eight years in bed, unable to sit upright, and dependent on her mum, Amy Mooney, for almost everything. Now 21, Lizzie is slowly reemerging into the world she left behind. Building her independence, she has relearned to walk, started exploring her local area and has even started volunteering her time and skills. According to Amy, Lizzie has “moved mountains” to get where she is today, but it is the determination and spirit of them both that has changed Lizzie’s course. In this episode Lizzie joins her mother, Amy Mooney, an occupational therapist who became her full-time carer. Through trying to understand her daughter’s condition, Amy has become a respected leader in the complex chronic illness space, helping people manage their conditions and improve their quality of life, and educating other practitioners globally. Together, they reflect on navigating this experience as daughter and mother, patient and carer. They share the years spent searching for answers, the grief of losing childhood and independence, and the slow, complicated process of re-entering the world. In this episode, Lizzie and Amy discuss: Growing up with severe ME/CFS and EDS Spending eight years bedbound, including four years completely flat Losing childhood, education and independence to chronic illness How online friendships became a lifeline Tools to maintain a sense of self Relearning the outside world after years in bed Why contentment became more important than hope Interested in taking part or sharing feedback on Make Visible?  Please click here. Find it easier to read than listen? Download the transcript here. Make Visible @visible.health [email protected]

STRATEGIES: Physical therapy tools to reduce crashes and improve quality of life for POTS, Post-Exertional Malaise (PEM), EDS, MCAS, and infection-associated chronic conditions such as ME/CFS and Long Covid. Many patients are told that they have anxiety or depression, or they just need to exercise, and that there is little that can be done to help their symptoms.  In this episode, Dr Clayton Powers, physical therapist and leading expert in complex chronic illness management, explains why patients should not be dismissed in this way, and what can be done to help. Dr Powers specializes in treating ME/CFS, Long Covid, EDS, Fibromyalgia, POTS, and MCAS, and trains other healthcare providers to do the same. While he doesn't promise a cure, his "pacing, not pushing" approach helps patients achieve measurably shorter, less intense, and less frequent crashes.  These are outcomes his patients consistently report over months of care. In this episode, we discuss: Why pacing remains one of the hardest skills for chronic illness patients to learn, and how to start The key difference between POTS and POTS with post-exertional malaise (PEM), and how Dr Powers assesses it Why standard graded exercise programs (like the CHOP/Levine Protocol) can worsen PEM symptoms Dr Powers' nervous system toolbox: cold therapy, compression boots, vibration devices, and supplemental oxygen How physical therapy can support people with mast cell activation syndrome (MCAS) How wearables like Visible, and trained service dogs, can flag an impending crash before it fully hits Why "permission to rest" needs to be built into clinical care, rather than treated as an afterthought Dr Clayton Powers works with the Bateman Horne Center, is a contributor to many of their free resources including the Clinical Care Guide, Therapy for Patients with PEM series and Coffee with a Clinician series. He has contributed extensively to education and research, including a feasibility studies on wearables for POTS management and a systematic review on the impact of exercise on POTS. Interested in taking part or sharing feedback on Make Visible?  Please click here. Find it easier to read than listen? Download the transcript here. Make Visible @visible.health [email protected]