Beyond Pain and Fatigue

In this episode, Soph is joined by Sharon Hennessey, expert physiotherapist and founder of The Hypermobility Project and Not Just Bendy, to discuss the diagnosis, common comorbidities and management of Hypermobility Spectrum Disorders (HSD) and Hypermobile Ehlers-Danlos Syndrome (hEDS).We discuss the diagnostic challenges and changing terminology used to describe these conditions, the frequent overlap of other complex symptoms and comorbidities, and some of the misconceptions that continue to contribute to delayed diagnosis and inadequate care. Together, Soph and Sharon explore the current diagnostic framework for HSD and hEDS, the importance of looking beyond joint hypermobility to recognise the multisystem nature of these conditions, and how physiotherapists may be placed to help support patients presenting with these conditions. Content warning: this episode includes discussion of diagnostic delay, chronic illness, and challenging healthcare experiences. If you need support, Beyond Blue and Lifeline (13 11 14) are available for 24/7 mental health support in Australia. You can find Sharon, access additional resources, and sign up for upcoming courses and events here:The Hypermobility Project (https://hypermobilityproject.com/)Facebook: https://www.facebook.com/hypermobilityproject/Instagram: https://www.instagram.com/hypermobilityproject/Not Just Bendy: https://www.notjustbendy.com/LinkedIn: https://au.linkedin.com/in/sharon-hennessey-b0324266For more information about the Ehlers-Danlos syndromes and hypermobility spectrum disorders, visit The Ehlers-Danlos Society: https://www.ehlers-danlos.com/

In this episode, Soph is joined by Anne Wilson, CEO of Emerge Australia, the leading patient organisation for people living with ME/CFS in Australia.Drawing on her extensive experience in health advocacy, policy, and systems leadership, Anne discusses the realities of living with ME/CFS, including the profound impact the condition can have on quality of life, the challenges many people face in obtaining a diagnosis, and the stigma and invalidation that continue to shape patient experiences.Together, Soph and Anne explore the recent joint communiqué from Australian clinicians, researchers, and advocacy organisations, unpacking what post-exertional malaise (PEM) actually is, why it is a defining feature of ME/CFS, and why outdated approaches such as graded exercise therapy have remained so influential despite longstanding concerns from the patient community. The conversation also examines broader issues of medical bias, whose symptoms are believed, and the importance of ensuring that people living with ME/CFS are meaningfully involved in shaping research, policy, and healthcare services. Anne shares her thoughts on what needs to change at a systems level to improve outcomes for the hundreds of thousands of Australians living with ME/CFS.Content warning: this episode includes discussion of poor healthcare experiences, medical gaslighting, stigma, and disability.If you need support, Beyond Blue and Lifeline (13 11 14) are available for 24/7 mental health support in Australia.You can learn more about Emerge Australia and access resources for people living with ME/CFS, Long COVID, carers, and health professionals via: https://www.emerge.org.au/You can find Emerge Australia here:Read the recent joint communiqueWebsite: https://www.emerge.org.au/Facebook: https://www.facebook.com/emergeaustraliaincInstagram: @emergeaustraliainc

In this episode, Soph is joined by Rob Nash, integrative Exercise Physiologist, for a discussion about the complexities of considering movement, exercise and physical activity for people living with ME/CFS. They will discuss the importance of first 'doing no harm' and highlighting the risks and recommendations against Graded Exercise Therapy (GET) for this group of patients in recent NICE guidelines, and emphasise that ME/CFS cannot be cured with exercise. They will then discuss the nuances of working with patients to best pace, adapt and incorporate safe and meaningful activity to support individual needs and goals. If you need support, Beyond Blue and Lifeline (13 11 14) are available for 24/7 mental health support in Australia.NICE Guidelines for ME/CFS (mentioned in episode):https://www.nice.org.uk/guidance/ng206 Emerge Australia Statement on GET and CBT for ME/CFShttps://emerge.org.au/gradedexercisetherapyandmecfs/You can find Rob here:https://healthrive.com.au/

In this episode, Soph is joined by Dr Marie-Claire Seeley, clinician-researcher and CEO of the Australian POTS Foundation, for a discussion about all things POTS. In this must-listen ep, Dr Seeley brings not just her clinical and research expertise but also her lived experience to give a comprehensive overview of what POTS is, how it can be assessed and diagnosed, and perhaps most importantly, what we can do to manage it. Content warning: this episode includes discussion of poor health care experiences and medical gaslighting.If you need support, Beyond Blue and Lifeline (13 11 14) are available for 24/7 mental health support in Australia.State of the Art Review Article (mentioned in episode):Lau, D. H., Fedorowski, A., Raj, S. R., Schild, C., Pace, L. A., Blitshteyn, S., Raj, V., Boris, J. R., Kavi, L., Seeley, M. C., & Gallagher, C. (2026). Postural Orthostatic Tachycardia Syndrome: A State-of-the-Art Review. Heart, lung & circulation, S1443-9506(25)01654-3. Advance online publication. https://doi.org/10.1016/j.hlc.2025.09.004You can find Dr Seeley here:LinkedIn: https://www.linkedin.com/in/mcseeley/Churchill Fellowship (Instagram): @autonomicjourneysAustralian POTS Foundation:• Instagram: @australianpotsfoundation• Facebook: https://www.facebook.com/AustralianPOTSFoundation• LinkedIn: https://www.linkedin.com/company/the-australian-pots-foundation• YouTube: www.youtube.com/@AustralianPOTSFoundationAustralian POTS Foundation Converge Conference4–5 Junehttps://www.apfconference.com.au/

In this episode, Soph is joined by GP Dr Jason Lam for a discussion about Mast Cell Activation Syndrome, along with a deeper chat about medical uncertainty when working with complex invisible illnesses. We discuss what MCAS is, challenges with diagnosis, and how we might take a pragmatic approach to clinical assessment and management for patients experiencing overlapping symptoms and conditions. Content warning: this episode includes discussion of poor health care experiences and medical gaslighting.If you need support, Beyond Blue and Lifeline (13 11 14) are available for 24/7 mental health support in Australia.You can find Jason here:https://www.drjasonlam.com.au/References/links:Afrin, L. B., Ackerley, M. B., Bluestein, L. S., Brewer, J. H., Brook, J. B., Buchanan, A. D., Cuni, J. R., Davey, W. P., Dempsey, T. T., Dorff, S. R., Dubravec, M. S., Guggenheim, A. G., Hindman, K. J., Hoffman, B., Kaufman, D. L., Kratzer, S. J., Lee, T. M., Marantz, M. S., Maxwell, A. J., McCann, K. K., … Molderings, G. J. (2020). Diagnosis of mast cell activation syndrome: a global "consensus-2". Diagnosis (Berlin, Germany), 8(2), 137–152. https://doi.org/10.1515/dx-2020-0005Afrin, L. B., Butterfield, J. H., Raithel, M., & Molderings, G. J. (2016). Often seen, rarely recognized: mast cell activation disease--a guide to diagnosis and therapeutic options. Annals of medicine, 48(3), 190–201. https://doi.org/10.3109/07853890.2016.1161231