Patients' description of ME/CFS

"I am a ghost in the land of the living – forgotten, ignored and drifting on the edges of life, whispering my message in the ears of the lucky ones who can participate in life and community." – Alwyin Catchpole.

"I describe it as my body being like a dodgy phone battery. It drains a lot faster than everyone else’s, and even if I charge it multiple times a day it still ends up flat. No amount of sleep feels refreshing and on bad days I ache all over." - Kayleigh Bell.

[ME is like] "a prison the exact dimensions of your body, which shrinks if you struggle." - Charles Turner.

"Imagine how you would feel if haven’t slept in three days, you caught the flu, had the worst hangover of your life - and you had to run a marathon feeling like this. This is how I feel everyday." - Ellie Bunce.

"I keep improving, getting another virus and so being set back again, sometimes worse than I was before. I feel as tho I fell down a muddy bank. I scramble up a bit and slip back. I scramble up once again and once again slip back, this time further down. Again and again and again." - John Peters.

"I used to tell my philosophy profs it was like Sisyphus. Putting all my energy into getting better, making up for lost time at school, then the boulder rolls back down and it’s square one again. No respite."

[ME is like] "the end of a thriller where the protagonist has been running for so long and is so badly injured they can't see properly and can't get up and are struggling to each for the phone but their arms won't work." - Ruth Braham.

"Sometimes I feel like a monk who has given up all earthly possessions including the body, mind, and identity, and now exists as free-floating disconnected consciousness. Many bad things happen to this consciousness, but it can't remember them all."

"For me, a crash feels like I’m falling out of control. I imagine I’m falling down a deep, dark hole (like a dry well). My instinct is to fight it, to put my hands out trying to grab onto the walls, but this only causes more injury and makes everything worse. The more I fight, the longer and more severe the crash becomes." - Jo Moss.

"Exiled into the Shadowlands symbolizes how ME makes one physically, emotionally, and socially isolated. This is the fallout from historical neglect, disbelief, and judgments surrounding this disease. Shame and isolation have been shrouds over this community for decades. For many, their own beds become a prison sentence of unknown duration, served behind closed doors, unseen, unheard, and still disbelieved. You can’t help but feel like a whisper of your former self, inaudible to the world." - Christina Baltais.

"Life with ME is all chutes and no ladders. One extra step indoor some days is one too many. And this is for the moderately affected. For the severely affected it's a never ending free fall into an abyss of physical disability." - PwME 4 a Molecular Signature.

flare-up A symptoms flare in ME/CFS is a temporary increase in symptoms, alternatively known as experiencing post-exertional malaise. May be referred to as a "crash" or "collapse".

PwME Acronym for a "Person with ME" (myalgic encephalomyelitis).