A paradigm shift is happening for Myalgic Encephalomyelitis /Chronic Fatigue Syndrome (ME/CFS).
The clinical guidelines for diagnosis and treatment have changed.
Formerly recommended treatments are now contraindicated.
Resources have been developed to assist health professionals with updating their clinical practice.

DiagnosING ME/CFS

The National Academy of Medicine (formerly Institute of Medicine) diagnostic criteria were developed in 2015 specifically for use in clinical practice and apply to both adults and children. Note that the IOM/NAM originally used the term Systemic Exertion Intolerance Disease (SEID) to refer to ME/CFS.

Diagnostic criteria (IOM 2015) require

  1. Post-exertional malaise (PEM), which is an abnormal response to physical or cognitive exertion,

  2. A substantial reduction or impairment in the ability to engage in pre-illness levels of activity (accompanied by fatigue),

  3. Unrefreshing sleep, and

  4. Cognitive impairment and/or orthostatic intolerance

Additional symptoms may be present and relevant for a treatment plan but are not diagnostic.

The CDC has extensive information for ME/CFS including the ME/CFS Assessment Overview handout that can assist diagnosis.

In 2021, NICE in the UK also published updated guidelines after a robust 3 year process… Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management.

Consulting older diagnostic criteria in addition to the above may be useful in case of doubt and to gain a better understanding of the range of symptoms ME/CFS patients can present with. These older criteria were developed for research as well as clinical use and are thus more restrictive. Additional considerations for diagnosing children are discussed.

the hallmark of ME/CFS: Post-Exertional Malaise

Post-exertional Malaise (PEM) is required for a diagnosis of ME/CFS; it is key to distinguishing ME/CFS from other diseases.

PEM is a pathological response to trivial physical or cognitive exertion. Exertion as minor as brushing teeth or talking can trigger major symptom exacerbation.

PEM differs from other forms of exertion intolerance. PEM involves a wider range of symptoms, onset is typically delayed by hours to days, and return to previous function takes days, weeks or longer: in severe cases a return to previous function may not be possible.

PEM loss of function has been demonstrated in repeated Cardiopulmonary exercise testing (CPET) studies. However, CPET is not recommended in the clinical setting due to the risk of harming the patient.

Additional information:

  • The M.E. Awareness NZ Guide to PEM for Clinicians has a list of questions to help identify PEM as well as suggestions on how to support patients in managing their PEM. Includes links to external resources - don't miss the 3-minute "ME and PEM" video.

  • The M.E. Awareness NZ Guide to PEM for patients explains PEM in plain English.

Learn & Earn CME points

Accredited by RNZCGP:

Managing ME/CFS

Pacing

Pacing is a way to manage activity and rest within a restricted energy envelope. Pacing helps minimise post-exertional malaise (PEM) and increase quality of life. The aim is for a stable level of activity that doesn’t trigger PEM, not an increase in activity. Predicting what may trigger PEM is complicated by the delay between the triggering exertion and resulting symptom exacerbation.

For more information:

Treatment

With evidence based management, including minimising the frequency and severity of symptoms, improved quality of life is possible.

Symptoms such as pain, sleep issues, and orthostatic intolerance, as well as any comorbid conditions, can be addressed conventionally with a start-low, go-slow approach as patients may be sensitive to medications.

For more information:

  • Brief overview of why GET and CBT were recommended treatments in the past and why these recommendations have been reversed - article on paradigm shift from Emerge Australia.

  • The NZ Doctor article "How to Treat - Myalgic Encephalomyelitis / Chronic Fatigue Syndrome" outlines treatment and support options for ME/CFS in the New Zealand context. Read it for free on our website.

  • The CDC has advice on managing specific symptoms: Managing Specific Symptoms of ME/CFS: Orthostatic Intolerance, Sleep Problems, Pain, and Memory/Concentration Problems

Support

Equally important to QoL is validation and supporting applications for financial support or for employment or study accommodations.

While Cognitive Behavioural Therapy (CBT) is no longer recommended as a treatment for ME/CFS, some patients may wish to access counselling to assist with adjustment to living with a debilitating chronic illness.

HRQoL of ME/CFS

pone.0132421.g003.jpg

“The EQ-5D-3L-based HRQoL of ME/CFS is significantly lower than the population mean and the lowest of all the compared conditions.”

From: The Health-Related Quality of Life for Patients with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS). PLoS One. 2015. © 2015 Falk Hvidberg et al. https://doi.org/10.1371/journal.pone.0132421

Additional Resources

View our 2-page handout that summarised the above information for Rotorua GPCME 2023

For even more resources