Transcript ME/CFS Society (SA) Inc.

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 Debate
 ME/CFS SA GP Guidelines
 ME/CFS Research & Funding
 ME/CFS UK Developments
 ME/CFS Adelaide Network
 ME/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
 New
Fatigue Syndrome
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
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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, multisystem, and multi-causal illness.
 Not easy to develop consensus guidelines
 Requires a genuine collaborative effort
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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
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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.
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Research funding bias towards psychological
models (CBT) or graded exercise therapy.
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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 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.
ME/CFS UK Developments
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Estimated 240000 UK sufferers with CFS
 Cost to economy has been estimated at:
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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
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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
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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 selfmanagement guidelines
 Continuing professional education / seminars
ME/CFS Adelaide
Clinical & Research Network
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New research into Rickettsia and CFS
Creation of an ME/CFS patient register for:
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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:
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$5000 PHCRED; $5000 DHS.
ME/CFS Future Directions
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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-psychosocial model.
“A physician who does not
admit to the reality of a
disease cannot be supposed
to cure it.”
William Cullen (1710-90)