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