For ME Awareness Week 2024, we shared infographics summarising some of the major symptoms of ME/CFS. You can find these collected here.
Whilst the fatigue in ME/CFS is debilitating, there is far more to ME/CFS than just this symptom. Fatigue is accompanied by cognitive dysfunction, sleep dysfunction, and post-exertional malaise (PEM). Beyond these core symptoms, individuals can experience an array of symptoms, such as – but not limited to –pain, gastrointestinal issues, visual disturbances and sensory hypersensitivities.
People with ME/CFS also often have comorbidities (co-occurring conditions) such as postural orthostatic tachycardia syndrome (POTS), irritable bowel syndrome (IBS), mast cell activation syndrome (MCAS) and fibromyalgia. There is ample evidence demonstrating why the view that ME/CFS is a psychosomatic illness is inconsistent with biomedical research. Nevertheless, individuals with ME/CFS frequently face stigma, often as a result of healthcare professionals and others being poorly educated about the condition and thus perpetuating misconceptions.
Post-exertional malaise
Post-exertional malaise (PEM), the cardinal feature of ME/CFS, is the worsening of symptoms (and potential appearance of new symptoms) following minimal physical or mental exertion. It typically occurs 24 to 72 hours following the triggering event but may occur sooner. PEM can significantly reduce the level of activity/functioning of an individual with ME/CFS, and can last for several days, weeks, or longer. The Bateman Horne Center produced a detailed YouTube series exploring many aspects of PEM.
Fatigue
As “fatigue” is such a widely used word, healthy individuals may mistakenly equate their own experience with the reality of fatigue in ME/CFS. Fatigue in ME/CFS is not just tiredness, rather it is a persistent symptom that is not adequately relieved by rest and significantly impacts activities of daily living. Fatigue, in addition to other symptoms, can be significantly worsened through PEM. A physical therapist with ME/CFS describes her personal experience of fatigue: “The most severe symptom that I have experienced daily has been unrelenting exhaustion. I often describe it as having a battery that is at a maximum of 10% full, draining quickly. Once the battery is drained, I cannot charge it.” Read the full account.
Cognitive dysfunction
The experience of cognitive dysfunction cannot be equated to the occasional forgetfulness and lapses in concentration experienced by healthy individuals, rather cognitive dysfunction is a complex and distressing symptom. The CDC states “Most people with ME/CFS have trouble thinking quickly, remembering things, and paying attention to details. Patients often say they have ‘brain fog’ to describe this problem because they feel ‘stuck in a fog’ and not able to think clearly.”
Sleep dysfunction
Sleep dysfunction is a frustrating symptom which includes changes in sleep quality, quantity and patterns. One article states, “unrefreshing sleep is used to describe a light sleep that, even after a full night, doesn’t leave you rested. People with ME/CFS often report waking up exhausted and feeling as if they haven’t slept at all – no matter how long they were actually asleep.” Studies reveal a correlation between poor sleep quality and diminished quality of life in ME/CFS patients. Sleep disturbances intensify existing symptoms like fatigue and cognitive dysfunction.