Make Visible: Chronic Illness Explored
Make Visible: Chronic Illness Explored
Visible with Emily Kate Stephens
#37 ME/CFS breakthroughs: are treatments getting closer?
59 minutes Posted Jun 26, 2026 at 7:17 pm.
Introduction: ME/CFS, Heat, Dysautonomia & Deep Sleep
Episode Overview: Five Experts on the State of ME/CFS Science
Dr Vicky Whittemore (NIH): The ME/CFS Research Roadmap & Genetics Priority
Dr Vicky Whittemore (NIH): Brain Inflammation, T Cell Exhaustion & the Immune System
Amy Rochlin (Complex Disorders Alliance): Moving ME/CFS Science Into the Clinic
Sonya Chowdhury (Action for ME): DecodeME, Genetics Centre of Excellence & Drug Repurposing
Tahlia Ruschioni (Bateman Horne Center): ME/CFS Progress Since 2019 & Long Covid’s Impact
Steve Gardner (PrecisionLife): LOCOME Study, 260 Gene Targets & AI Precision Medicine
Analysis: DecodeME, Phenotyping & the Case for Personalised ME/CFS Treatment
David Tuller (UC Berkeley): PACE Trial, NICE Guidelines & Research vs Patient Reality
Amy Rochlin: Sequence ME, Global Collaboration & £4.5m UK Government Investment
Closing Reflections: Stepping Stones to the Clinic & What Comes Next
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Show notes
Are ME/CFS research breakthroughs finally bringing treatments closer? In the wake of Long Covid, the needle may be shifting — at last.
ME/CFS has been underfunded and under-researched for decades. Despite the scale and severity of the illness, major gaps remain in diagnosis, clinical care and treatment options. There is still no single diagnostic biomarker, and people who are more severely affected are often excluded from research entirely.
In this episode we bring together leading voices in ME/CFS research, advocacy and clinical innovation to ask: what breakthroughs are changing our understanding of ME/CFS — and could they bring us closer to treatments?
Themes include: the impact of Long Covid on ME/CFS funding and research; why genetics studies like DecodeME are key milestones toward individualised treatment; how precision medicine could transform care; and why a significant gap remains between research momentum and patient reality today.
Guests: Dr Vicky Whittemore (NIH/NINDS), Amy Rochlin (Complex Disorders Alliance), Sonya Chowdhury (Action for ME), Dr Steve Gardner (PrecisionLife) and David Tuller (UC Berkeley).