Post Exertional Malaise
Post Exertional Malaise (PEM) is considered the hallmark characteristic of ME
Other terminology suggested includes “post exertional neuroimmune exhaustion” (PENE) or “post exertional symptom exacerbation” (PESE).
PEM is included as essential for diagnosis of ME in the IOM, ICC and Canadian criteria.
PEM is the additional symptoms and/or exacerbation of current symptoms in response to exertion
Key facts about PEM
Exertional trigger: physical, cognitive, sensory (touch, sound, smell) and/or emotional
Onset: tends to be delayed, on average 1-2 days after exertion
Duration: can last several days, or sometimes months or longer
Repeated triggering of PEM can lead to further deterioration in symptoms, therefore the aim is to avoid/minimise PEM.
How physiotherapy may trigger PEM
This applies to any physiotherapy intervention, whether for ME or an unrelated matter
As PEM is often delayed, it may not be apparent in session. Always check on a person’s response to any intervention in the following 2-3 days to establish tolerance.
Assessment of PEM
2-day Cardio-Pulmonary Exercise Test (CPET) (however the very nature of this will cause PEM and should be carefully clinically reasoned as to purpose with risks outlined)
The CPET has been used to trigger PEM for research purposes to study the physiological effects of physical exertion in people with ME.
Look for patterns of exertional triggers followed by symptoms worsening
The person mentions “good days” of being able to do more, followed by “bad days”
Language such as “crash”, “payback”, “relapse”, “flare”
Needing the weekend to recover
Dropped usual activities just to manage basic daily living
Subjective outcome measure: DePaul symptom questionnaire
*Remember cognitive exertion from subjective questioning may trigger PEM. Consider timing, length and structure - gaining information in advance so a person can pace their replies is helpful
If physiotherapy is for an unrelated matter, the therapist must still understand the nature of that person's PEM and triggers in order to adapt treatment to minimise chance of causing PEM.
Physiotherapy management aims
Help to identify PEM triggers with careful analysis of activities and symptoms
Energy management strategies
Avoid/minimise triggering of PEM (particularly if treating an unrelated issue)
Currently there is no evidence for any effective physiotherapeutic interventions for people with ME when diagnostic criteria for participant selection includes PEM. This means:
Careful appraisal of current evidence base is required to determine if PEM is a criteria for participant selection, or if results cannot be generalised to people with ME
Future research needs to use diagnostic criteria that includes PEM as essential so that results can be applied to the ME population