No more CFS

This page is about ME and other immune disorders. If you don't want to know, just move on. 

Last week - or was it a fortnight ago? - I heard a programme on BBC Scotland radio dedicated to ME. The ME Society's Dr Charles Shepherd was on with Scottish MP Alison Thewliss who has taken up the cause (we're so glad to have her onside) and Stuart Murdoch of Belle & Sebastian who has ME - has had for 20 years off and on. 

A week on, the one comment that has stayed with me is from Dr Shepherd: he rejects the term CFS (Chronic Fatigue Syndrome) as a description of the condition - chronic just means it's persisted for more than 3 months - and talks only about ME (Myalgic Encephalomyelitis). 

I've resisted using the term ME so far, but I've now decided it's time to say: f*ck that for a game o soadgers. I have ME. Have had it for 2 years now. It started with a cold and a chest infection. The original infection went, but the exhaustion, lack of concentration, weakness, sensitivity to noise, etc - all stayed. And it's still with me. 

It's an up and down kind of problem.

For example, I made a great recovery last autumn. Nearly cancelled my membership of the ME Society, telling myself there was nothing wrong with me. I was out and about. Saw friends. Had lunches - liquid lunches even. Shopped. Made plans to go to Orkney round about now. Then at the end of November, I got a virus. Weeks later, I'm still mostly at home and often in bed. Really missed out on Christmas. Never made the January sales (unheard of at Casa Nisbet because I do like a wee bargain). Sometimes confused (I couldn't decide what day it was when I woke up on Sunday and then realised I'd also lost track of a consultant's appointment about my hearing - it's on Wednesday, not Tuesday). Still hating noise, so mostly the telly and radio are out. Still going from sleeping 14 hours at a time to not sleeping at all - like now! I need to get my hair done but so far I've had to cancel twice. Poor Alison at Jones & Co must wonder what on earth is going on. 

What treatment am I getting for ME? None. Rien. Nada. Niente. Nichts. Neechevaw. 

Charles Shepherd mentioned on the BBC Scotland programme that there is a difference between ME and Fibromyalgia. Fibro is also a disorder of the immune system but it apparently involves pain. I'm quite jealous of people with Fibro: it looks like they have a proper diagnosis. Nobody has tried to send them for 'exercise' or for cognitive behaviour therapy or suggested it's really all in their minds. The doctor's surgery doesn't rejoice that they've lost 8 kilos, not realising it's because they're no well! Imagine that: being jealous of someone else's illness. Let that sink in. 

I know I'm lucky. I have family who help when they can (and if I ask them - which I know I'm bad at). I have friends who tolerate my ups and downs. And a growing group of ME friends I can talk to online. On a practical level, I can have my shopping, my wine and my books delivered (thanks to Alex and Elder Park Library). I've learned to shop the sales online. And I have the company of a bonkers cat that demands a lot of my attention.

Lots of young people don't have any of that. And that worries me a lot. Because ME and Fibromyalgia - and a lot of other immune disorders - strike at any age. Often in teenagers. People can and do lose their teens and twenties - and beyond - to these illnesses. What a loss to us all. So much talent going to waste. 

So we keep on plodding on. Good luck to all ME and Fibro sufferers - and more power to their supporters!