We are deeply appreciative that the community has shared their experiences with us. The accounts detailing the devastation of post-exertional malaise (PEM) in ME/CFS are both moving and profoundly informative. Due to the sheer, overwhelming number of responses to the survey, it is not possible to share every response in a single article; however, all accounts are vital for informing future biomedical publications, conveying the realities of ME/CFS to researchers, supporters, and the public, and guiding internal organisational education.
Whilst every individual’s experience is unique, it is striking how many shared themes emerge across the PEM survey responses. When people from all walks of life – many of whom are entirely disconnected from one another – describe similar physical experiences, it offers a powerful, collective window into the reality of PEM and the lived experiences of ME/CFS.
Common ways participants describe the experience of PEM include:
- The worst flu, the worst hangover, nausea, and feeling poisoned.
- Bone-deep exhaustion, complete energy drain, a flat battery, body shutdown, and feeling as though the plug has been pulled.
- Heavy limbs, heavy eyelids, feeling weak, wading through mud, and feeling as though you’ve been weighted down with lead.
- Feeling as though you have been run over or hit by a vehicle, aching, and pain.
- Jet lag and sleep making no difference.
The impact of PEM in ME/CFS is more than profound. Careers, education, relationships, friendships, family life, hobbies, basic daily tasks, and the ability to care for oneself – PEM can tear through it all. Yet ironically, this devastating cardinal feature of ME/CFS is often disbelieved, accompanied by unfair accusations such as laziness. Furthermore, the unpredictability of PEM means that one day you might not be able to do something you could do on another – a frustrating experience for those living with ME/CFS, and fuel for doubt among those who fail to take the time to understand the condition and the payback of PEM.
For those affected: even though living with ME/CFS can be profoundly lonely, you are not alone. There are many people around the world who can relate to your experiences and many who believe what you are going through because they (or their loved ones) are affected too.
As with any other chronic condition, the symptom burden of ME/CFS and its ripple effects are clear, profound, and can be overwhelming to people’s mental health.
We urge anyone in distress to consider reaching out to appropriate organisations or helplines, such as Mind or The Samaritans, for support.
This article is part of the Symptom Saturday series.
