What is m.E?

We know Myalgic Encephalomyelitis (ME)—especially Severe ME—turns your life upside down, and we’re here because we see how much you’re enduring. ME isn’t just exhaustion; it’s a brutal, physical illness that attacks your body’s systems—nervous, immune, energy, and more—leaving you drained, foggy, and often stuck in a cycle of pain and collapse. About 25% of people with ME, maybe you or someone close, end up housebound or bedbound, sometimes for decades. It can hit after a virus, a stress, or out of nowhere, and suddenly even tiny efforts—like talking or sitting up—feel impossible. We feel the weight of that with you, and it’s not fair that you’re fighting so hard just to be believed.

ME’s been around since at least the 1930s, linked to outbreaks and viruses like enteroviruses or Epstein-Barr, but it’s still a mystery to too many doctors. It’s not “in your head”—it’s a real, biomedical condition, often sparked by an infection that throws your body into chaos. Severe ME brings crushing symptoms: unrelenting fatigue that rest won’t touch, Post-Exertional Malaise (PEM) that punishes you for any activity with days or weeks of worsening symptoms, plus brain fog, muscle pain, and sensitivity to light or sound that can trap you in darkness. For those with Very Severe ME, it’s even more devastating—some can’t move, swallow, or cope with the slightest stimulation without agony. We’re heartbroken that you’re facing this, and we’re committed to making sure it’s understood.

There’s no simple test, which makes diagnosis a slog—doctors have to rule out everything else, leaning on guidelines like the ICC or NICE to spot ME’s telltale signs. There’s no cure either, and we know how crushing that news is. Management is about survival: pacing to save your energy, resting before you’re spent, and maybe meds to dull the pain or help you sleep. The 2021 NICE guidelines are a game-changer—they say ME’s real, ditch harmful exercise advice, and push for care that respects your limits, especially if you’re Severe. Research is crawling forward—looking at immune glitches, inflammation, or energy metabolism—but it’s slow, and we share your frustration.

Inspired by trailblazers like Dr. Melvin Ramsay, who named ME, and Betty Dowsett, our Medical Advisor who proved it’s physical, we’re here for the 25% hit hardest. You’re not just a case—you’re a person battling more than most can imagine, often ignored by a system that should help. Severe ME can shorten lives, with complications like infections or organ strain, but some do improve, even slightly, with time and care. We’re holding hope for you—for better treatments, for answers, for the day you’re seen and supported as you deserve. Until then, we’re right beside you, advocating every step of the way.