Let’s talk about ME

Today is ME awareness day. Or this week is ME awareness week. Or possibly both, I’m slightly confused. Confusion (cognitive difficulties) being one of the problems that affect people with ME.

ME is an invisible disease. Often inaccurately called Chronic Fatigue Syndrome, (CFS) especially in the USA, it is a lot more than just chronic fatigue. ME stands for myalgic encephalomyelitis. Myalgia means muscle pain and encephalomyelitis means inflammation of the brain and spinal cord. The symptoms are many and harsh. Crippling fatigue, headaches, dizziness, loss of balance, nausea, irritable bowel syndrome, muscle pain, joint pain, cognitive problems, and all sorts of other unpleasant things. Any activity results in a massively disproportionate payback. Walking to the shops can cause leg muscles to lock up, go solid and produce agonising pain. Standing in a line is difficult because of pain and dizziness. I’ve written more about this in my blog post What is ME? and I also described how I struggle with waking up in A morning with ME.

ME varies a lot too. I have been so ill as to be housebound or bedbound through much of the last eleven years, but I have also been well enough to work for a reasonable portion of that time. Of course “well enough” is relative, as while I might have looked fine at work (and sometimes I didn’t, to the consternation of my colleagues) I often collapsed in bed as soon as I made it home and was able to do nothing until going out to work the next day. Today I am going to go out for a meeting which is the other end of an hour long motorbike ride. Two months ago I didn’t have a hope of even getting on the bike, but at the moment I can as long as I pace myself, and even then it will hurt tomorrow.

People with ME look well because unless you visit them at home, you only ever see them on a good day, when they have mustered the strength to venture out. That is why the illness is invisible. Spend any length of time with an ME sufferer and you will notice signs of exhaustion creeping in. Visible wilting, muddling of words as brain fog takes over.

Earlier today I was sent this video made by @daisydinosaur_, I think it is a good summary of the problems that we face. 

Author: Latentexistence

The world is broken and I can't fix it because I am broken. I can, however, rant about it all and this is where I do that when I can get my thoughts together. Most of the time you'll find my words on Twitter rather than here though. I sometimes write for Where's The Benefit too.

2 thoughts on “Let’s talk about ME”

  1. This is a great piece. I am constantly shocked by the lack of knowledge about ME that social care and medical professionals have. It’s not a though it’s a new thing is it. More years ago than I care to disclose I worked as a disability rights worker and did a lot of work claiming Mobility and Attendance Allowance and then DLA for people with ME; then nearly every claim went to multiple appeals as no-one seemed to know or understand much about ME, seems to me it’s not any different now. Thank you also for pointing up the difference between ME and CFS – my partner has CFS and there are some crossovers in the effects but they are two different things

  2. the doctor who gave me my tentative diagnosis then sent me to a specialt to confirm his thoughts said on the first day to be prepared to live with an invisible illness. he said i would be fine if i had something people could see like a broken leg.
    most of the time i look well, mostly because i cannot go outside without factor 30 when the sun is out or i will burn, so look a bit tanned. my other half has become very good at monitoring me over the day as he can pick up small things others cant, that even i dont notice.
    but also i am a smiley person even when in pain (mostly, sometimes i could cry and get teary but try not to) i refuse to let it get me down and i will always say ‘yes i am fine’ even though its a lie

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