Fatigue is such a devastating symptom of ME/CFS, yet it is profoundly misunderstood. ME/CFS-related fatigue is not everyday tiredness, nor is it normal fatigue experienced by healthy people. It is a crushing symptom that weighs individuals down and can be felt throughout the entire body.
We are deeply grateful to everyone who shared their insights through our recent Symptom Saturday survey. Whilst it is not possible to feature every response in a single article, every single account is vital. They help shape future biomedical publications, convey the realities of ME/CFS to researchers, supporters, and the public, and guide our internal organisational education.
We have drawn together some of the common themes about the experience of fatigue
Common ways participants describe the experience of fatigue include:
- Heavy; Leaden; Filled with or weighed down by concrete; Feeling the pull of increased gravity; Weighed down; Wading through treacle
- Drained battery that doesn’t properly charge; Plug pulled; Energy draining out of body; Energy-depleted; Weak
- Like having a bad flu constantly; Like having a hangover and flu at the same time; Feel as if drugged; Poisoned
- Unrelenting; Overwhelming and debilitating
- Affecting thinking and concentration; Too exhausted to fulfil basic needs; Lying down not enough to rest; Bone deep exhaustion
Fatigue is an unrelenting deeply, isolating symptom in ME/CFS. It cuts individuals off from family time, social activities, and hobbies, fundamentally fracturing their identity and how they view themselves. It leaves people grieving who they used to be – whether as a daughter, father, friend, or professional.
Ultimately, fatigue in ME/CFS shrinks lives so severely that it often takes a profound toll on mental health. This impact is unsurprising given the immense loss of careers, relationships, hobbies, and independence.
Even though living with ME/CFS can feel profoundly lonely, you are not alone. There are people around the world who understand your reality and believe what you are going through because they (or their loved ones) live it too.
As with any other chronic condition, the symptom burden of ME/CFS and its ripple effects are clear, profound, and can be mentally overwhelming.
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.
