Symptoms Of M.E

Living with Severe Myalgic Encephalomyelitis (ME) can feel overwhelming, and we see you. The physical toll it takes is immense, with a range of serious symptoms rooted in neurological, immune, and other bodily dysfunctions. These aren’t just challenges—they’re profound struggles that can leave you feeling trapped in your own body. Right now, in the UK, there’s no clear medical pathway to investigate or validate the intense suffering you might endure for years, even decades, after a diagnosis. That lack of support can feel isolating, and it’s not fair. We’re here to shed light on what you’re going through and push for the recognition you deserve.

There are also conditions that might overlap with ME—like Ehlers-Danlos Syndromes (EDS), Mast Cell Disease, Periodic Paralysis, or Mitochondrial Disease. These could be part of your story too, and they deserve thorough exploration. We’ve heard from many in our community about the symptoms that define Severe ME, and we’ve listed them below based on the International Consensus Criteria (ICC). These aren’t just words on a page—they’re real experiences that can turn your world upside down. You’re not alone in this.

Symptom	Description
Cognitive Dysfunction	“Brain fog” that clouds thinking, memory, and focus—making even simple tasks hard.
Pain	Relentless discomfort or agony that can strike anywhere in the body.
Energy Poverty	A deep, unshakable exhaustion that rest can’t fix, draining all stamina.
Muscle Fatigue	Weakness in muscles that makes movement feel impossible or unsustainable.
Post-Exertional Neuroimmune Exhaustion (PENE)	A crushing crash after even minor effort, leaving you worse for days or longer.
Muscle Spasms	Sudden, uncontrollable muscle twitches or cramps that disrupt your peace.
Tremor	Shaking or trembling that you can’t control, adding to the physical strain.
Paralysis	Temporary inability to move parts of your body, locking you in place.
Movement/Motion Sensitivity	Overwhelming dizziness or discomfort triggered by motion or activity.
Hyperesthesia	Heightened sensitivity to touch, making even gentle contact unbearable.
Gut Issues	Digestive troubles like pain, nausea, or irregularity that sap your strength.
Dysautonomia	Body systems (like heart rate or blood pressure) going haywire, leaving you unsteady.
Sleep Difficulty	Trouble falling or staying asleep, or waking unrefreshed despite rest.
Emotional Lability	Mood swings or tears that come out of nowhere, hard to predict or manage.
Paresthesia	Tingling, numbness, or strange sensations creeping across your skin.
Temperature Dysregulation	Feeling too hot or too cold, with your body unable to find balance.
Hyperacusis	Painful sensitivity to sound, where everyday noises feel like an assault.
Photophobia	Light—natural or artificial—hurts your eyes or worsens your condition.
Visual Disturbance	Blurred vision, trouble focusing, or other eye issues that distort your world.