Management

Management

ME/CFS, also known as Chronic Fatigue Syndrome / Myalgic Encephalomyelitis, is a multifactorial chronic complex condition that can be managed in General Practice. GPs are pivotal in centrally coordinating multidisciplinary management and care under Australian Medicare arrangements.

This page covers a brief summary of:

  1. Medical Management
  2. Layered Assessments for Optimal Management
  3. Annual ME/CFS Cycle of Care Management Framework
  4. Practice Nurse Led Care Planning

For more detailed information, refer to Resource Downloads – References

  • International ME/CFS GP Primer, 2014
  • Beyond ME/CFS: Report Guide for Clinicians, (GP Recommendations), Institute of Medicine, 2015 (20 pages)
  • ME/CFS Advisory Committee Report to NHMRC Chief Executive Officer, 2019

Medical Management

Medical management requires an accurate diagnosis based on specific Diagnostic Assessment Criteria. For best management outcomes, early diagnosis and interventions are recommended.

Management uses a combination of therapies tailored for each patient; using a precision therapy, biochemical layered problem solving approach.

The goal of management is to reduce the total disease burden, isolate underlying disease pathways, as well as symptom reduction, maintaining function and maximising treatment outcomes and quality of life improvement.

Care planning centralises records, referrals and coordinates the multidisciplinary team care management.

Patient self-monitoring and feedback of treatment outcomes guide decision making and care planning towards optimal management (Stepwise Treatment Plans).

Education and Health Coaching: It is important to provide the patient with up to date information on ME/CFS and the chronic disease management approach to care; including the importance of self-management, good communication, with monitoring and feedback for decision making.

Explain Post Exertional Malaise (PEM) and fatigue and the importance of sleep, pacing to manage energy levels to limit the condition, minimise relapses and prevent unnecessary disability. Refer Self-Management Workshops

Layered Assessments for Optimal Management

After diagnosis ongoing layered problem solving assessments guide treatment decisions.

Ongoing layered assessments include: (For more information see International ME/CFS GP Primer, 2014 or South Australian GP Recommendations, 2020)

  • Medical conditions associated with physical fatigue
  • Endocrine and metabolic disorders
  • Orthostatic intolerance – neurally mediated hypotension (NMH), postural orthostatic tachycardia syndrome (POTS)
  • Cardiovascular diseases
  • Respiratory conditions
  • Infections – multiple underlying infections have been identified
  • Sleep-related disordersg. obstructive sleep apnoea
  • Autoimmune disorders
  • Neuromuscular conditionsg., multiple sclerosis, Parkinson’s disease
  • Neurological or cognitive conditions

Annual ME/CFS Cycle of Care Management Framework

The South Australian ME/CFS Annual Cycle of Care Program (2019) is a checklist for reviewing ME/CFS for management and the patient’s general health. It can identify any health concerns early and facilitate the discussion of the best treatment options with patients.

The checklist contains core topics from generic chronic disease lifestyle management programs adapted specifically for use with ME/CFS patients.

Topics include:

  • ‘Patient understands their condition and treatments available’
  • The importance of communication and providing reliable feedback on symptom fluctuations and treatment outcomes
  • Pacing as a self-management intervention to manage current energy levels and to maximise function while staying within limits to allow a greater chance of recovery. Encourage patient to keep records or use a pedometer and/or a heart rate monitor or a daily activity diary. Consider requesting an allied health assessment (occupational therapy, physiotherapy or exercise physiology).
  • Sleep: Discuss common problems. Advise on good sleep hygiene.
  • Rest & Fatigue
  • Nutrition and Diet and the importance of nutritional interventions for health and wellbeing
  • Cognitive Issues – Impaired concentration, short term memory or word retrieval, hypersensitivity to light, noise or emotional overload, confusion, disorientation
  • Mental health and Wellbeing, management of grief and loss, stress reduction, relaxation techniques e.g. meditation and gentle massage therapy are often helpful.
  • Pain Management is a mixture of pharmacological and non-pharmacological interventions
  • Movement and Exercise: Graded Exercise Therapy (GET) is no longer recommended, it may be harmful causing increased levels of disability.
  • Complementary therapies, these are widely used by patients for symptom relief. Patients should be encouraged to consider evidence based information.
  • Medications – There are no evidence-based pharmacological treatments or cure for ME/CFS; however, there are emerging pharmacological therapies.

Specific symptoms may respond to medication, e.g. some agents may be useful for pain management, sleep promotion, muscle twitching or mood disorders.

Start with a low dose of any medication since the usual doses are often poorly tolerated.

Practice Nurse Led Care Plans

In Australian General Practice settings, General Practice Chronic Disease care plans (nurse led) and team care arrangements (Item No 721, 723) provide a useful outcome-focussed approach, monitoring patients over time and working towards optimal management using the annual reviews (Item No. 732).

Care plans centralise records, coordinate interventions, provide health coaching, allied health referrals, and facilitate regular reviews towards improved health outcomes and optimal management.

The goal of management and care planning is to focus on outcomes and to coordinate team care, multidisciplinary interventions and referrals. This includes monitoring underlying disease pathways, as well as symptom reduction, maintaining function and maximising treatment outcomes and quality of life improvement.

Care plans incorporate and document management programs for the Centrelink Disability Support Pension (DSP) and the National Disability Insurance Scheme (NDIS) assessment requirements that need patients to have documentation that they are ‘fully stabilised’ and ‘fully managed’.

Care Plan Team Care arrangements may include:

  • General Practitioner
  • Practice Nurse / Case coordinator
  • Exercise physiologist
  • Physiotherapist
  • Dietitian / Nutritionist
  • Pharmacist
  • Psychologist
  • Health coach / Lifestyle educator
  • Patient
  • Carers

For more detailed information, refer to Core Documents and Resource Downloads – References