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

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

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... sore throats; recurrent flu-like symptoms; general malaise; new sensitivities to ... Links with future Fibromyalgia and Multiple Chemical Sensitivity guidelines. ... – PowerPoint PPT presentation

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


1
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

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 (gt6 months)  
  • Post-exertional malaise (gt 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 A8.8 billion per annum
  • A5.5 billion pa on social security alone
  • Annual medical costs A525 million pa.
  • UK Nationwide ME/CFS Treatment Centres
  • 12 new dedicated centres cost A21million
  • 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)
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