ME/CFS Society (SA) Inc. Annual Awareness Day Seminar Wednesday 12 th May 2004

1. ME/CFS Society (SA) Inc.Annual Awareness Day SeminarWednesday 12th May 2004 Dr Peter Del Fante Medical Director Adelaide Western Division Of General Practice

2. Outline of Presentation • ME/CFS Definition Debate • ME/CFS SA GP Guidelines • ME/CFS Research & Funding • ME/CFS UK Developments • ME/CFS Adelaide Network • ME/CFS Future Directions

3. ME/CFS Definition Debate • ME/CFS is now a recognised medical condition – worldwide consensus • However, there is still significant tension between psychological and biological models of ME/CFS • Controversial Fatigue Syndrome • New Canadian Definition to the rescue

4. ME/CFS Definition Debate • Most CFS case definitions or diagnostic criteria have been developed for research purposes only and not clinical use. • The most widely used research case definition for ME/CFS is the one developed by Fukuda (1994) at the US Centers for Disease Control – vague / overinclusive. • New Canadian criteria (2003) better reflects the clinical aspects of ME/CFS.

5. Canadian ME/CFS Clinical Case Definition - 2003 • Chronic Fatigue (>6 months) • Post-exertional malaise (> 24 hours) • Sleep dysfunction • Pain (joint, muscle & headache) • Neuro-cognitive manifestations • Poor concentration/memory; impaired information processing   • Other manifestations: • Neuroendocrine manifestations: • sweating episodes; cold extremities; intolerance of extremes of hot and cold; marked weight change; etc • Autonomic manifestations: • Low BP; high HR; light headedness; Irritable bowel • Immune Manifestations: • tender lymph nodes; recurrent sore throats; recurrent flu-like symptoms; general malaise; new sensitivities to foods, medications and / or chemicals Exclusion criteria: extensive list, including primary psychiatric disorders

6. ME/CFS GP Guidelines • ME/CFS is considered to be a complex, multi-system, and multi-causal illness. • Not easy to develop consensus guidelines • Requires a genuine collaborative effort • Patients, ME/CFS Society, SA Dept for Human Services, GPs, Clinicians, Psychiatrists, Researchers and Academics. • Utilise the new Canadian criteria • ME/CFS GP Guidelines are a South Australian first that will not be kept a secret.

7. ME/CFS GP Guidelines • They will help ensure better basic care of ME/CFS patients by GPs, especially in rural areas. • They aim to optimise all aspects of care that can contribute to partial or full recovery. • Dynamic guidelines that will be updated regularly with new knowledge. • Links with future Fibromyalgia and Multiple Chemical Sensitivity guidelines.

8. ME/CFS Research & Funding • In Australia, research into ME/CFS is minimal when compared to UK and USA, and is mostly dominated by proponents of psychological models and treatments. • Research funding bias towards psychological models (CBT) or graded exercise therapy. • In reality, like every other medical illness or disease, it is best to have a bio-psycho-social approach to the understanding and treatment of ME/CFS.

9. ME/CFS UK Developments • UK Action for ME guidelines sent to all GPs via NHS. • PACE study (Dr Peter White, London) • Pacing, Activity and Cognitive behaviour therapy : a randomised control Evaluation • Pacing – Adaptive Pacing Therapy • Activity – Graded Exercise Therapy • FINE study (Dr Alison Weardon, Manchester) • Fatigue Intervention by Nurses Evaluation • Home visiting service for severe CFS.

10. ME/CFS UK Developments • Estimated 240000 UK sufferers with CFS • Cost to economy has been estimated at: • Total : A$8.8 billion per annum • A$5.5 billion pa on social security alone • Annual medical costs A$525 million pa. • UK Nationwide ME/CFS Treatment Centres • 12 new dedicated centres – cost A$21million • Multidisciplinary Care Teams (Doctors, OTs, etc) • Support development & integration of local services and GPs + professional training

11. ME/CFS Adelaide Clinical & Research Network • Collaborative approach between patients, the ME/CFS Society (SA), clinicians and researchers. • Regular forums to discuss progress with research and treatments • Encourage and support new research and clinical initiatives in SA • Development of user-friendly healthcare provider treatment and patient self-management guidelines • Continuing professional education / seminars

12. ME/CFS Adelaide Clinical & Research Network • New research into Rickettsia and CFS • Creation of an ME/CFS patient register for: • Longitudinal study of ME/CFS outcomes / prognosis • Cohorts for clinical and basic research • Linking of research and clinical findings within the patient database • A referral centre for multidisciplinary assessment, management and support for more severe ME/CFS patients. • Funding to date: • $5000 PHCRED; $5000 DHS.

13. ME/CFS Future Directions • Promote community awareness and professional recognition that ME/CFS is a complex and severely debilitating illness in our society that deserves government support • Research must focus on ‘real’ ME/CFS patients that meet the Canadian criteria (or similar) if we are to truly advance our understanding and management of ME/CFS • Funding must be provided for both research and treatment of all aspects of this condition within the context of a balanced bio-psycho-social model.

14. “A physician who does not admit to the reality of a disease cannot be supposed to cure it.” William Cullen (1710-90)