Tahlia Ruschioni is Executive Director at the Bateman Horne Center (BHC), a relatively small center with an incredibly powerful reach, who are bringing decades of complex chronic illness understanding to build a global network of practitioners to support complex needs.

Rooted in a deep history of treating ME/CFS, BHC has used that understanding to reach a far wider population. As Education Director, Tahlia developed multiple programmes and a global model for clinician education and training in post-infectious illness care. Through its Medical Education Resource Center (MERC), BHC has now reached over 13,000 healthcare professionals across all 50 U.S. states and 90 countries.

Tahlia led the development of BHC’s Clinical Care Guide, giving clinicians a framework for treating ME/CFS, Long COVID, dysautonomia and mast cell activation using proven knowledge, existing licensed medications and well-understood techniques. Drawing on decades of expertise from some of Visible’s favourite clinicians, including Dr Lucinda Bateman, Melanie Hoppers and Amy Mooney, it is practical, thoughtful and an incredible resource for patients to take to their own clinicians.

Tahlia has also overseen a wealth of videos and printable resources, including What is ME/CFS?, What is Orthostatic Intolerance?, and Overcoming Barriers to Access Care, for patients, carers and the wider community. The Life with a Low Battery: Living with ME/CFS that is referenced in the conversation shows how carefully BHC considers patients’ different sensory needs.

In this episode we discuss:

• How Tahlia’s family’s experience of ME/CFS led her to the Bateman Horne Center
• Why BHC trains every provider to meet patients with respect, curiosity and time
• BHC’s multimodal approach to medical education
• Why lived-experience shapes every resource the BHC produces
• Writing ME/CFS standards of care into medical licensing
• How Long COVID has opened doors for ME/CFS research
• The importance of consistent definitions for e.g. post-exertional malaise (PEM)
• Why funding and care must support the whole patient, including living costs, medication access and help at home

BHC’s work with Federation of State Medical Boards, alongside its ever-expanding practitioner training, has the potential to change medical education for ME/CFS and Long COVID at a systems level. BHC packs more punch than most organisations its size. If you’d like to support its work, please consider donating 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

podfeedback@makevisible.com

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

podfeedback@makevisible.com

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

podfeedback@makevisible.com