Step by step
- Find an experienced GP. See our Find a doctor list (mainly south-east Queensland and northern NSW), or ask Emerge Australia.
- Contact Emerge Australia. They're the national ME/CFS organisation. Their registered nurses offer free support and telehealth, and they can help you find an ME/CFS-experienced GP or specialist.
- See your GP for the tests that rule out other conditions and the extra ME/CFS-relevant tests. Take our GP script.
- Ask about a Chronic Condition Management Plan to get Medicare-subsidised allied health sessions, most usefully an occupational therapist experienced in pacing.
- Get referrals where needed: a sleep study, and cardiology or an autonomic clinic for dizziness on standing.
- Consider research participation. Studies can include free immune testing or MRI. See trials in Australia.
Key organisations and services
| Service | What it offers |
|---|---|
| Emerge Australia | The national ME/CFS and Long COVID organisation. Free nurse support and telehealth service, a list of ME/CFS-literate GPs and specialists, resources, advocacy, and the AusME research registry. |
| Your GP | Tests, prescriptions (e.g. LDN), referrals, Chronic Condition Management Plan |
| Chronic Condition Management Plan | Medicare arrangement via your GP that subsidises a set number of allied health visits each year |
| Sleep studies | Medicare-rebated if you meet screening criteria; otherwise about $300–400 privately |
| NCNED, Griffith University (Gold Coast) | Australia’s main ME/CFS research centre; trials, research studies and biobank. Join their research registry to hear about studies. |
| Deakin IMPACT / Barwon Health (Geelong) | TRI-ME trimetazidine trial |
| ME/CFS Australia, ME Group Australia and state groups | Support groups, information and advocacy |
| Active Health Clinic (Melbourne) | Pacing-focused allied health (exercise physiology, dietetics, OT); telehealth available |
Emerge Australia contact details
- Phone: 1800 865 321 or (03) 9529 1344
- Press 1: nurse support & telehealth (Mon–Fri, 9am–4:30pm AEDT, free)
- Press 3: research, biobank and clinical education (Tue–Thu, 8am–3:30pm AEDT)
- Email: information@emerge.org.au
- Web: emerge.org.au
- Address: Level 7, 276 Flinders Street, Melbourne VIC 3000
Financial and practical support
- NDIS: some people with severe, long-term ME/CFS are eligible. Emerge Australia has guidance on applying. Evidence of functional impact over time is key, so symptom diaries help.
- Centrelink: the Disability Support Pension and JobSeeker (with medical exemptions) may apply. Ask your GP for detailed reports on how your illness affects day-to-day functioning.
- Disability parking permits and companion cards can save a lot of energy. Apply through your state or territory.
- Private health extras may cover part of the cost of compression garments, physio or OT.
- Carer Gateway: 1800 422 737 for free support for carers.
A caution about some programmes
New Australian guidelines
The NHMRC has funded ($1.1 million) the development of new Australian clinical guidelines for ME/CFS. They’re not yet released. Until then, many Australian clinicians follow the UK’s NICE guideline (2021) and the US CDC guidance, both of which move away from graded exercise.
In a crisis
- Lifeline: 13 11 14, 24 hours
- 13YARN: 13 92 76, 24 hours, for Aboriginal and Torres Strait Islander people
- Beyond Blue: 1300 22 4636
- Emergency: 000
Living with a serious illness that others don’t always believe can be isolating and exhausting. Reaching out is a strong thing to do.