Diagnosis

Diagnosis

ME/CFS diagnosis is based on a detailed clinical history, physical examination, and laboratory investigations. While symptoms vary from patient to patient there are standard criteria to aid a clinical diagnosis – International ME/CFS Primer, 2014 and questionnaires including:

  • IACFSME Primer 2014: ME/CFS Clinical Criteria Worksheet
  • IACFSME Primer 2014: Pediatric ME/CFS Case Definition Worksheet
  • ME/CFS Canadian Multisystem Questionnaire
  • South Australian Tool to separate ME/CFS and Depression

Download Assessment Tools here

Understanding the Diagnostic Process

The hallmark of ME/CFS is post exertional malaise (PEM), the failure to recover after physical or mental activities. In a clinical setting this may be interpreted as a physical fatigue which needs to be investigated.

To confirm a diagnosis, different doctors and centres may use slightly different diagnostic criteria, assessment forms and methods. For an accurate diagnosis a doctor needs to fully investigate causes of symptoms and any underlying conditions. The International Primer describes ME/CFS as having Multisystem Dysregulation that presents as an array of seemingly unrelated symptoms. For more information on the symptoms see below.

General Practice Diagnosis

General Practice Diagnosis is made clinically using:

  • Medical history and clinical presentation; current health and symptoms
  • Standard questionnaire of ME/CFS symptoms
  • Investigation of symptom causes and other overlapping conditions

There is currently no single test to confirm the diagnosis of ME/CFS. There are, however, emerging tests available as potential clinical markers. These group patients and guide treatment and management plans.

To confirm a diagnosis of ME/CFS will involve several clinic visits.

The main diagnostic steps include:

Step 1 – A medical history using a series of questions, and a physical examination to investigate fatigue and possible causes and assessment for post exertional fatigue.

Step 2 – A standard series of routine medical tests, involving blood and urine analysis, will be completed to investigate fatigue and exclude other possible illnesses.

Step 3 – After the screening tests, more specific tests depend on personal history and any previous test results. Additional tests may also clinically group and guide later treatments.

Step 4 – To exclude depression, your doctor may recommend a mental health assessment. This could entail a brief discussion, or a written or oral test.

Step 5 – After completing the history and testing, further review using a more detailed list of ME/CFS symptoms to identify and target potential management and treatment areas.

Step 6 – Referral to appropriate specialists for disease specific investigations or management of more complex issues.

Step 7 – For early intervention and prevention, the doctor may classify you as having idiopathic chronic fatigue (fatigue of unknown cause). This includes post-viral or post-infection fatigues where it is important to encourage early rest and healing to limit chronicity.

To assist with the diagnostic process, it is important for patients to prepare for appointments and keep a diary so they provide accurate information on their symptoms and fluctuations. A diary helps link symptom patterns and identify what affects symptom triggers.

Patient information sheets on diagnosis are available download Patient Handouts here

  • What is ME/CFS? Part A
  • What is ME/CFS? Part B
  • What is ME/CFS? Part C
  • Understanding the Diagnostic Process
  • ME/CFS Canadian Multisystem Questionnaire

For more information see –

Further explanation of symptoms presenting

Primary Symptom

Post Exertional Malaise (PEM), the failure to recover after physical or mental activities. This is a substantial reduction to previous levels that significantly interferes with daily work and activities.

In the clinical assessment of ME/CFS, this unexplained Post Exertional Malaise, sometimes interpreted as fatigue, lasts > 6 months duration and is not the result of ongoing exertion and/or is not alleviated by rest.

While validated diagnostic tests are available i.e. the 2 day bike test, these tests need to be used with caution because they can cause added stress and further relapse. In South Australia tests are available through University of South Australia Exercise Physiology Clinic.

 

Additional Symptoms important in diagnosis and management include: download Assessment Tools here

  • Neuro-cognitive dysfunction – significant impairment of short-term memory or ability to concentrate
  • Sleep disorders – unrefreshing sleep or changes in sleep patterns
  • Orthostatic intolerance including reduced mobility
  • Autonomic manifestations – light-headedness, heart palpitations, shortness of breath
  • Gastro-intestinal symptoms including irritable bowel or nausea
  • Pain – muscle pain and weakness, joint pain
  • Headaches of a new pattern or severity
  • Immune manifestations – flu-like symptoms, sore throat and/or tender cervical or axillary nodes
  • Other sensitivities including food, light, noise, smells and/or temperature
  • Sensitivities to medication
  • Neuro-endocrine manifestations – change in body temperature, or intolerance of heat or cold and stress

While waiting for a diagnosis patients are encouraged to:

  • Focus on wellness and healing
  • Slow down and allow your body to rest and heal
  • Stop pushing through, as ME/CFS and many chronic conditions are sensitive to stress
  • Record events leading up to your illness
  • Record the changes in your symptoms and activity levels, to guide management
  • Keep a diary of everything you try, or anything that changes – including treatments and lifestyle adjustments
  • Be informed, be empowered