Severe ME Day 2025 - interview with Wendy Matthews, ME Respite and ANZMES

Join ANZMES President Fiona Charlton as she interviews Wendy Matthews Trustee/Chair of ME Respite (and Executive Committee member of ANZMES). They discuss Wendy's 30 years of lived experience with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS), what they want health professionals to know and policymakers and MPs to do. Transcript available here: https://drive.google.com/file/d/1CsSh... 0:00 Title introduction 0:14 Introduction to guest speaker 1:10 Wendy shares her lived experience 5:40 naso gastric tube 6:46 What prompted Wendy's advocacy work 7:00 practical support for pwME/CFS 10:43 break the isolation 12:45 critical message for health professionals 14:06 validation of biomedical disease 15:02 differential diagnosis from depression 15:40 post exertional malaise 16:09 patients' description in GP clinic of PEM 18:00 Body systems affected, multiple triggers, complex presentations 15:39 thorough history, listen Not FND, there are structural changes in the brain Early correct diagnosis and intervention 22:13 Not eating disorder, treat the undernutrition gastrointestinal disturbances 29:39 PEM for severe and very severe ME/CFS 34:30 flawed deconditioning theory 40:56 We don't want to be sick!! 40:17 treatments that work and don't cause harm pacing and PEM prevention 45:18 three point checklist and resources: validate, stop recommending harmful techniques, ME-aware care 51:13 dysautonomia and resources 53:57 What do we want MPs to do? 54:00 Acknowledge it's not going away, prevalence increasing Severe illness - functionality scale, QoL scale National health crisis Affects everyone Need for ME-aware training / medical education Respite facilities Funding for biomedical research 1:02:49 disability support services 1:06:21 Tracking and reporting 1:08:25 Inaction is a choice that costs lives 1:09:16 public call to action - contact your MPs and GPs.