Early diagnosis of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is important. It helps people receive appropriate health and social care, reducing the risk of worsening symptoms, and ensuring they get the support that may be available.
If you live with long COVID and experience post-exertional malaise (PEM), click here to learn more about long COVID diagnosis.
How are ME/CFS diagnosed?
There are no blood tests or scans that can reliably diagnose ME/CFS. Instead, doctors make the diagnosis by investigating whether your symptoms meet the diagnostic criteria and making sure the symptoms aren’t better explained by another condition.
ME/CFS Diagnostic Criteria
“Diagnostic criteria” are guides that help doctors identify a condition. There are multiple diagnostic criteria for ME/CFS, but we recommend doctors use the US National Academy of Medicine (NAM) criteria. The NAM criteria list the minimum symptoms needed to make a diagnosis (see image below). People with ME/CFS can have more than twenty-two common symptoms. To help your doctors make an accurate assessment of your health, it is important to tell them about all the symptoms you experience.
Diagnostic criteria that do not list post-exertional malaise (PEM) as a core feature are no longer recommended. To read more about Emerge Australia’s position on diagnostic criteria for ME/CFS, click here.
Exclusion of other causes of symptoms
To rule out other possible causes of your symptoms, your doctor may need to run extra tests or refer you to a specialist. For example, thyroid problems, low iron or coeliac disease can cause symptoms that overlap with the US National Academy of Medicine (NAM) criteria.
Once all other causes of your symptoms are ruled out or managed, your doctor can make a clear diagnosis of ME/CFS.
You can still have other health conditions as well – this is very common and does not rule out an ME/CFS diagnosis. Another illness would only prevent a ME/CFS diagnosis if it fully explains all of the symptoms that meet the NAM criteria.
Common conditions seen in some people with ME/CFS include:
- Orthostatic intolerance (OI)
- Postural orthostatic tachycardia (POTS)
- Mast cell activation syndrome (MCAS)
- Fibromyalgia
- Ehlers-Danlos syndrome (EDS)
To learn more about associated conditions, click here.
Steps to diagnosis
We are often asked, what are the steps to diagnosis? And how do I talk with my doctor about ME/CFS?
These steps below can guide you on your health journey, but everyone is different. You can choose how to share your personal information with your doctor.
1. Prepare your symptom information
Having notes will help you communicate your symptoms to your doctor. Complete the, Symptom Severity Hierarchy and the Sleep and Pain Profile and take them with you to your doctor’s appointment.
You may also like to use the World Health Organization Disability Assessment Schedule 2.0 (WHODAS) to help you describe how much difficulty you are having with activities.
2. Talk to your doctor
Talk with your doctor about your symptoms and whether there could be another explanation for them.
3. Tests and assessment
Your doctor will discuss the next steps, which will depend on their medical experience, your symptom profile, and which investigations they feel are appropriate for your individual situation.
This may include blood tests, sleep studies, a 10-minute NASA Lean Test to check for orthostatic intolerance (OI), and referrals to specialists to investigate or rule out other conditions.
To learn more about orthostatic intolerance and download a copy of the 10-minute NASA lean test for your doctor, click here.
The diagnosis process may take time, which is normal. We encourage you to learn more about energy management (pacing), while you and your doctor investigate your symptoms. More information on energy management (pacing) can be found here.
4. Diagnosis
If other causes of your ongoing symptoms are ruled out and your symptoms meet the US National Academy of Medicine (NAM) criteria, your doctor may feel confident in making a diagnosis of ME/CFS.
Some doctors feel ME/CFS care is outside their scope, but clinicians can play a key role in helping you. Emerge Australia offers evidence-based ME/CFS training for doctors. Please share this link and encourage them to access our clinical training.
Diagnostic Resources
- US National Academy of Medicine (NAM) criteria “Clinicians Guide”
- Emerge Australia’s position on diagnostic criteria’s for ME/CFS
- Symptom Severity Hierarchy
- Sleep and Pain Profile
- NASA Lean Test for orthostatic intolerance (OI)
- World Health Organization Disability Assessment Schedule 2.0 (WHODAS)
Other diagnostic tools for your doctor
- Centers for Disease Control and Prevention ME/CFS Assessment Overview
- Centers for Disease Control and Prevention ME/CFS Toolkit for Healthcare Providers
- Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Diagnosis and Management in Young People: A Primer
- International Associations for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (IACFS/ME) primer – includes surgical and obstetric considerations.