ME/CFS Society (SA) Inc.Annual Awareness Day Seminar

Wednesday 12th May 2004

Dr Peter Del Fante

Medical Director

Adelaide Western Division

Of General Practice

Outline of Presentation

ME/CFS Definition DebateME/CFS SA GP GuidelinesME/CFS Research & FundingME/CFS UK DevelopmentsME/CFS Adelaide NetworkME/CFS Future Directions

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

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.

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

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.

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.

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.

ME/CFS UK DevelopmentsUK 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.

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

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

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.

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.

“A physician who does not admit to the reality of a disease cannot be supposed to cure it.”

William Cullen (1710-90)