Severe ME Month 2025 Webinar Event

Photo credits: Lea Aring and German Association for ME/CFS | https://www.mecfs.de/mecfsfotos/

You are cordially invited to ME Group Australia (MEGA)’s webinar events for Severe ME Understanding & Remembrance Day (Severe ME Day). For this August event, we plan them into 2 separate events during the last week of August.

How to Care for Severe ME Presentations	Tue, 26 August 2025 from 6:00 pm (Brisbane time)
Lived Experience Forum	Sat, 30 August 2025 from 3:00 pm (Brisbane time)

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Purpose for the event

As a small charity who does not receive government funding, this event will be a light touch and community focused approach. MEGA dedicates to improving health outcomes for Myalgic Encephalomyelitis (ME). Our focus is how to practically help people with ME (pwME), people with Long Covid (pwLC) whose symptoms fits case definition of ME and ME/CFS, and their healthcare professionals.

Our passion is to establish a speciality clinic for ME and related diseases. This webinar event is part of our capacity and credibility building strategy. If you can comfortably do so, we are grateful for your donation to support our dream come true.

The event

Our non-ME vlunteer Dr Stanley Du Preez and Julie Hughes, our Occupational Therapy Advisor to the Board, will host the event.

Our events are co-designed with people living with Severe ME (pwSME) and their caregivers, allied health professionals, researchers, academics, and NDIS service providers. We believe that meaningful care models for people with ME are best achieved through genuine collaboration across lived experience and professionals with special interests in providing person centred support for pwSME.

We will record the event and share on our YouTube channel as soon as they become available.

Event program

Recording of presentation sand accomanying resources from the Even will be uploaded here as soon as they become available.

Tue, 26 August 2025: How to Care for Severe ME Presentations

Event Host	Dr Stanley Du Preez, MD, PhD * ME Group Australia (MEGA) Community Coordinator (Volunteer) * Resident medical officer with the Gold Coast Hospital and Health Service * Completed his PhD at the National Centre for Neuroimmunology and Emerging Diseases (NCNED), Griffith University.
Severe and Very Severe Myalgic Encephalomyelitis (ME) in Australia: The role of Speech Pathologists in a neglected patient cohort	Heenal Narsey, MSP, MSPA-CPSP
Research into frail, homebound and bedridden people (FHBP): collecting experiences and developing advocacy tools	Penelope McMillan * Speakperson and Director at ME/CFS Australia Ltd. * Guidelines Development Committee for NHMRC ME/CFS Clinical Guidelines. Dr M. Alejandra Pinero de Plaza, PhD * Research Fellow, Caring Futures Institute, Flinders University * Knowledge Translation and Research Advisor to the Board.
Severe ME, Notes For Australia	Greg Crowhurst, * Nurse, Author, Musician * Full-time Carer for wife with Very Severe ME, * Co-founder of Stonebird.

250826 How to Care for Severe ME Program Download

Sat, 30 August 2025: Lived Experience Forum

Topic of this year’s forum is Assistive Technology (AT)

Forum Host	Julie Hughes * Lecturer in Occupational Therapy , Australian Catholic University (ACU), * Occupational Therapy Advisor to the Board, * Occupational Therapist at ME Exhaustion Management by Telehealth.
Special Guests	Clare Batkin * Occupational Therapist, Clinical Educator, Sessional Academic, * Founder of the clinical education business Your OT Tutor.
	Jon Mitchelle * Operations Manager and Assistive Technology Manager at Smart Places Australia
	Jo Mak * Neurological Physiotherapist * Founder of mobile Allied Health Clinic, My Rehab Team.
Lived Experience Panels	Sandra Adrianne Tracey Ketra Shelley Tracey