The Faces Of PEM
Make the Invisible Visible
PEM must be: Seen. Heard. Supported.
The Faces of PEM is a growing digital wall of people living with post-exertional malaise (PEM), and the supporters standing beside them.
We invite you to upload a photo of your face and become part of a collective presence that cannot be dismissed. Together, these faces form a living mosaic showing that people with PEM are here, visible, and deserving of recognition.
Every face carries a simple truth:
- PEM is real
- It is not the same as fatigue
- PEM is a safety issue that need action
- Designing safe systems for PEM is not optional
Recognition of PEM is not optional. It is essential for safe care, appropriate policy, accessibility, and meaningful support.
Why Change Matters
PEM is the hallmark symptom of myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS), and a common feature of long COVID.
PEM is a serious biological response to exertion. Symptoms can worsen after physical, cognitive, emotional, or sensory activity — even activities considered minor or routine.
Despite this, PEM remains widely misunderstood in:
- healthcare and clinical settings
- disability and policy frameworks
- workplaces and schools
- everyday decision-making
Too often, PEM is reduced to “fatigue”. But PEM is not ordinary tiredness, and misunderstanding it can cause real harm.
Rethink Pushing Through
When PEM is mistaken for fatigue, people are often encouraged to push through, do more, or try harder.
For someone living with PEM, this can lead to:
- Worsening symptoms
- Loss of function
- Recovery periods lasting days, weeks, or months
- In some cases, previous capacity does not return.
Recognition and understanding of PEM are essential for safer healthcare, better policy, improved accessibility, and appropriate support.
A Three-Year Campaign for Change
The Faces of PEM is more than an awareness campaign. It is a growing movement to make PEM visible across community, healthcare, and policy.
Year One – Community: PEM is real not the same as fatigue.
We are calling on people living with PEM, carers, loved ones, allies, and supporters to join us by adding their face to the wall.
Together, we start by making the invisible visible.
Year Two – Clinicians: PEM is a safety issue: Rethinking “pushing through”
We will invite clinicians and healthcare professionals to stand alongside the community. Recognition and understanding within healthcare are critical to preventing harm and improving care.
Year Three – Policy Makers: Designing safe systems for PEM
In year three, we will bring this collective wall of faces to policy makers and decision-makers. Together, we will show that people living with PEM are here, visible, and impossible to ignore.
Be Part of the Change
Awareness only creates change if it is seen. Every face:
- added makes the invisible harder to ignore.
- challenges misunderstanding.
- strengthens the call for recognition, safe care, accessibility, and support.
Every face added sends a message:
- PEM is real
- PEM deserves recognition
- Understanding PEM supports safe systems
Together, we are building visibility, recognition, and change. Upload your face. Stand with the community. Help make PEM visible.
