ME Association – ME Hurts!


This leaflet carries factual information and comments from people with M.E. and their loved ones, who explain what it feels like to have this neurological disease.


“One day I caught a virus… and I never got better!”

M.E. often starts that way – with something like a ‘flu virus that knocks you sideways. You expect to get over it in a week or so, but weeks, months and even years go by, and you feel no better…

We believe that well over 250,000 people in the UK are living with this nightmare of an affliction. M.E. stands for myalgic encephalomyelitis. It has other names, including CFS – chronic fatigue syndrome – but the end result is always the same: M.E. hurts!

“I have to choose between brushing my teeth and washing my hair – I don’t have enough
energy to do both,” Dawn.

“At its severest M.E. can be fatal. The very severest lie bedbound in dark rooms, tube fed,
catheterised, paralysed, in horrific pain and unable to tolerate even a slight comforting touch. Merryn, was just 21 when she died,” Clare.

“Severe ME is the pits! – all the good things of life: light, company, entertainment, activity and stimulation become potentially harmful or can feel torturous,” Kathryn.

Telephone Helpline

The ME Association telephone helpline – ME Connect – is available every day of the year, during the hours of 10am-12noon, 2pm-4pm and 7pm-9pm. Please phone: 0344 576 5326 if you have any questions or would simply like to talk to someone who is there to listen.

Please note this leaflet is a download. You can read it on-screen and save to your computer, phone or other device and can attach it to any email you might need to send. But you will need access to a printer if you wish it printed.


0344 576 5326

Available every day of the week between these times: 10am - 12noon, 2pm - 4pm and 7pm - 9pm.

Calls cost the same as other standard landline numbers (starting 01 or 02). If you have a call package for your landline or mobile phone then calls will normally come out of your inclusive minutes.