Gransnet forums

Health

Blog about ME/CFS

(5 Posts)
kittylester Wed 16-Aug-17 11:45:07

This piece in the Huffington Post was written by a friend of DS1. I found her blog very moving.

www.huffingtonpost.co.uk/isabel-walter/living-with-me_b_17750928.html?

MiniMouse Wed 16-Aug-17 13:45:08

Devastating for someone so young sad

I find it quite baffling how little interest there seems to be in general about ME/CFS - even apparently on here! When it's cropped up previously there have been few posts.

Considering how many people are affected, it seems odd that more is not done to bring it to the fore.

I suppose we should be thankful that, at least now, it is recognised as a 'proper' illness. When I was diagnosed (donkeys years ago), I was so lucky that I had a neurologist who recognised it for what it is, i.e a physical problem and not all in the mind!!!

gillybob Wed 16-Aug-17 14:17:50

I have just read the blog kittylester and agree it is very moving (and sad).

Having a neurological disorder myself I can totally sympathise and empathise with a lot of what she says.

Luckygirl Wed 16-Aug-17 15:17:22

Such a dreadful illness; but at least the "yuppy 'flu" tag seems to have faded a bit - such a burden when you feel awful and there is an implication that you are malingering.

I worked for a brain injury service and the sort of cognitive hidden disabilities with which this lady is afflicted were very common and so so difficult to deal with.

And diagnosis is hard, because some of the symptoms overlap with depression and many doctors are tempted to go down that route, because they feel on firmer ground; and because some people with ME do benefit from anti-depressant treatment.

It is a complex and challenging illness that we simply do not understand and that is an additional burden for sufferers. I liken it to IBS, which is so common but so poorly understood.

MiniMouse Thu 17-Aug-17 11:56:35

Such a dreadful illness; but at least the "yuppy 'flu" tag seems to have faded a bit - such a burden when you feel awful and there is an implication that you are malingering.

You're so right Lucky! It especially applies if you don't look ill. Plus, of course, when people see you out and about, they don't realise that just because you're OK that day it doesn't mean that you haven't had a s**t few days before then - or that the payback for being active for a day is horrendous!