People with ME/CFS can experience a wide range of symptoms because many parts of the body do not function properly. Terms mean different things to different people, so it is worth learning what they mean in ME/CFS.
‘Debilitating fatigue’ in ME/CFS is not just feeling tired or exhausted.
It is worsened by all kinds of activity, is not caused by excessive cognitive, physical, emotional or social exertion, and is not significantly relieved by rest.
Loss of energy is accompanied by feeling unwell:
feeling flu-like, especially in the early days of the illness
restlessness or feeling ‘wired but tired’
low energy or a lack of physical energy to start or finish activities of daily living and the sensation of being ‘physically drained’
cognitive fatigue that worsens existing difficulties
rapid loss of muscle strength or stamina after starting an activity, causing for example, sudden weakness, clumsiness, lack of coordination, and being unable to repeat physical effort consistently.
Post-exertional malaise(PEM) is the worsening of symptoms that can follow minimal cognitive, physical, emotional or social activity, or activity that could previously be tolerated.
Symptoms can typically worsen 12 to 48 hours after activity and last for days or even weeks, sometimes leading to a relapse. Post-exertional malaise may also be referred to as post-exertional symptom exacerbation (PESE).
Sleep problems include unrefreshing sleep or sleep disturbance (or both), which may mean that:
Even after a full night’s sleep, people do not feel refreshed. They wake up exhausted and feeling as if they have not slept at all, no matter how long they were asleep.
feeling flu-like and stiff on waking
broken or shallow sleep,
altered sleep pattern or hypersomnia (excessive sleeping).
Cognitive difficulties (sometimes described as ‘brain fog’) may include:
problems finding words or numbers
difficulty in speaking
slowed responsiveness
short-term memory problems
and difficulty concentrating or multitasking.
Many people with ME/CFS experience the following symptoms:
orthostatic intolerance and autonomic dysfunction, including dizziness, palpitations, fainting, nausea on standing or sitting upright from a reclining position
temperature hypersensitivity resulting in profuse sweating, chills, hot flushes, or feeling very cold
neuromuscular symptoms, including twitching and myoclonic jerks
flu-like symptoms, including sore throat, tender glands, nausea, chills or muscle aches
intolerance to alcohol, or to certain foods and chemicals
heightened sensory sensitivities, including to light, sound, touch, taste and smell
pain, including pain on touch, myalgia, headaches, eye pain, abdominal pain or joint pain without acute redness, swelling or effusion.
