#37 ME/CFS breakthroughs: are treatments getting closer?

from Make Visible: Chronic Illness Explored · host Visible with Emily Kate Stephens

SCIENCE: Are ME/CFS research breakthroughs finally helping us understand the disease and move closer to treatments? 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. Part of the challenge is scientific. ME/CFS is a complex, multi-system illness that can affect the immune system, nervous system, metabolism and energy production. There is still no single diagnostic biomarker, and people who are more severely affected are often left out of research because participation itself can be difficult or impossible. People with ME/CFS, advocates, clinicians and researchers have fought to move the field forward but progress has been frustratingly slow. Now, in the wake of Long Covid and growing recognition of infection associated conditions the needle may be finally shifting. 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 better diagnostics, treatment strategies and care? Across these conversations, several themes emerge: How Long Covid has brought funding, research infrastructure, and clinical attention to ME/CFS Why genetics research, including DecodeME and LOCOME studies are key milestones that could enable individualised treatment How precision medicine could enable personalised medicine How collaboration between organisations is accelerating progress Why a major gap remains between research momentum and the reality of patient care today Dr Vicky Whittemore is programme director of the NINDs at the NIH, overseeing the ME/CFS grant portfolio. She has brought her decades of expertise to identify infrastructure gaps (biobanks, training, data sharing), and produce a full research roadmap focused not on describing ME/CFS but on getting treatments into clinical trials and to the patients. Amy Rochlin is CEO of the Complex Disorders Alliance (CODA), a patient-founded non-profit organisation accelerating groundbreaking research, clinical innovation, and patient-centred solutions for complex disorders. Through collaborations with industry and clinical leaders they are pushing to develop diagnostic tools and targeted therapies through collaboration and precision medicine at scale. They have recently announced a multi-system research model for complex disease. Sonya Chowdhury, CEO of Action for ME has seen a palpable shift over her 14 years tenure, position the non-profit at the forefront of the joining patient experience with science. Co-lead of the DecodeME study (alongside the University of Edinbugh), Action for ME has evolved to be a driving force of the research, building the Genetics Centre for Excellence, identifying patients’ top 10+ research priorities, and giving focus to PEM in their PRIME workshops. Dr Steve Gardner, CEO and co-founder of PrecisionLife has built on the incredible work of Decode ME and the wealth of patient data to build clear understanding of the genes involved in ME/CFS. Their work has identified 260 associated genes which has lead to 42 drug repurposing candidates, and the potential to finally offer the stratification and individualise treatment that the community has been needing. David Tuller is a senior fellow in public health and journalism at UC Berkeley's Center for Global Public Health who has been investigating scientific, methodological and ethical problems within ME/CFS since finding errors in the 2011 PACE trial. His advocacy work, documented in his ongoing series Trial By Error, was an important voice in finally overturning the NICE guidelines of treating ME/CFS with their admission of Graded Exercise Therapy being harmful and Cognitive Behavioural Therapy not curative. 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]

What this episode covers

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).