The sheer devastation of cognitive dysfunction in ME/CFS is very apparent from the overwhelming number of responses to our recent Symptom Saturday survey. This symptom can rip through careers, hobbies, and relationships. We are deeply grateful for the insights shared; and whilst it is not possible to feature every response in a single article, all accounts are vital. They help inform future biomedical publications, convey the realities of ME/CFS to researchers, supporters, and the public, and guide internal organisational education.
We have drawn together some of the common themes about the experience of cognitive dysfunction.
Common ways participants describe the experience of cognitive dysfunction include:
- Mind going blank; Brain feels paused; Fogged up brain; Head full of cotton wool
- Can’t concentrate; Information too fast to process; Difficulties with retaining information; Unable to read
- Unable to follow conversation; Conversations become exhausting
- Knowing what you want to say but being unable to access the words; Words you know well no longer come to mind; Simple words no longer accessible; Losing words mid-sentence; Using wrong words
- Feeling stupid/less intelligent than before; Regressed cognitive abilities
- Worsened by post-exertional malaise (PEM)
A common phrase within the ME/CFS community is: “You don’t get it, unless you get it.” Cognitive dysfunction is an intense, deeply distressing, life-disrupting symptom that can erode the very aspects of life and personality people cherish most. Yet people, even loved ones, often fail to grasp its severity dismissing it as an exaggeration of an ordinary occurrence, e.g. normal forgetfulness, rather than recognising how profoundly debilitating it truly is. Careers are impacted, cherished hobbies become exhausting or impossible, and personal relationships grow strained under the weight of this symptom.
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.
Read our comprehensive overview of cognitive dysfunction in ME/CFS
