QLD ME/CFS HealthPathway

Did you know that Qld has statewide¹ HealthPathway for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome?

HealthPathways is a web-based portal with evidence-based information on the assessment and management of common clinical conditions including referral guidance. The pathways are written by General Practitioners with support from local GPs, hospital based specialists and other subject matter experts.

Clinical Excellence Queensland is working with Hospital and Health Services and Primary Health Networks across Queensland to implement.

This year, HealthPathway for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) quietly went live in Qld. (The link to the Pathway can only be accessed by those who has access to the HealthPathways portal.)

The Pathway for ME/CFS is arguably the most comprehensive pathway available in Australia.

I am confident that the Pathway will encourage both Health Consumers with ME/CFS and Medical Practitioners/Clinicians in Qld to develop meaningful Healthcare Partnerships.

I wish to share a quick summary of the Pathway. I hope the Health Consumers feel at ease that the Pathway is on their side.

If you are a Medical Practitioner/Clinician, please read the Pathway thoroughly. I hope it will give you confidence in caring your patients with complex diseases.

While we cannot provide Medical Advice, we may be able to provide relevant information to your question. You can find our contact details from here.

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Background

Brief summary of characteristics of ME/CFS, prevalence, and prognosis.

Experience of patient is explained compassionately.

Assessment

• History taking.
• Identify symptoms that may associated with ME/CFS based on one of the following Diagnostic Criteria.
  • US National Academy of Medicine diagnostic criteria
  • Canadian Consensus Criteria
  • International Consensus Criteria
  • UK National Institute for Health and Care Excellence Guideline – Myalgic Encephalomyelitis (or Encephalopathy)/Chronic Fatigue Syndrome: Diagnosis and Management
• Perform a targeted examination.
• Consider diagnosis.
• Additional considerations.

Management

Management section starts with a highlighted Practice Point.

• In case of significant uncertainty for diagnosis, non-acute general medicine assessment and non-acute paediatric medicine assessment are suggested.
• Treat co-morbid conditions. List of common co-morbid conditions is provided.
• Validate the patient’s experience and provide education and advice about the management of:
  • prognosis and energy management to improve outcomes.
  • pacing to avoid or prevent post‑exertion malaise (post‑exertion neuroimmune exhaustion).
  • physical activity and exercise.
  • sleep.
  • rest periods and relaxation.
  • diet.
  • education and employment
  • complementary and supplementary therapies.
  • psychological support.
• Manage the other symptoms.
  • orthostatic intolerance.
  • medications.
• Consider completing a Care Plan as personalised care and support plan is key to improving outcomes for patients.
• Consider private referral for allied health support for advice about symptom management and independence in activities of daily living, as appropriate:
  • Dietetics assessment
  • Occupational therapy assessment
  • Physiotherapy assessment
  • Exercise physiology assessment
  • Non-acute adult mental health assessment
  • Physiotherapist or exercise physiologist
• Discuss and plan for crashes, setbacks or relapses.
• Schedule regular follow‑up visits.

Request considerations

• Non-acute general medicine assessment.
• Non-acute paediatric medicine assessment.
• If predominant symptoms are suggestive of an underlying/comorbid disorder, consider requesting appropriate sub-specialty referral.
• Consider requesting:
  • an allied health assessment (occupational therapy, physiotherapist or exercise physiology) and asking the clinician to avoid graded exercise therapy (GET).
  • sleep study assessment.
  • psychological therapy under a Medicare GP mental health care plan for relaxation training.

Information

Emerge – Continuing Professional Development

Dialogues for ME/CFS:

Activity and Energy Management – Pacing [video, 15 minutes and 50 seconds]

Activity and Energy Management – Pacing [video transcript]

Frontiers in Paediatrics – ME/CFS Diagnosis and Management in Young People: A Primer [Includes a clinical diagnostic worksheet for use at initial and subsequent consultations]

ME Association – Diagnosis Of ME/CFS: The Importance Of Having An Early And Accurate Diagnosis

National Health and Medical Research Council – Myalgic Encephalomyelitis and Chronic Fatigue Syndrome

1. Correction:
   There seemed confusion between Qld Health and the HealthPathways. Discussion followed by the concern, we were advised by the HealthPathways that the HealthPathway for ME/CFS is not statewide.
   * The HealthPathways is not rolled out to the Gold Coast and Townsville regions.
   * Darling Downs and West Moreton regions have the HealthPathways for Chronic Fatigue Syndrome (CFS), not for ME/CFS.
   * We encourage doctors/clinicians to check the HealthPathway for ME/CFS. If it’s not available at your HealthPathways side, we suggest reaching out to your local Primary Health Network (PHN).
   * We were not able to check each region’s HealthPathways for ME/CFS contains the same information because we do not have access to all 12 HealthPathways sites.
   * Despite the HealthPathway is not statewide yet, we appreciate the creation of HealthPathway for ME/CFS. This is a step forward from the time we approached Clinical Excellence Queensland to implement a Clinical Guideline for ME in Qld.
   
   
   
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