Comments | kath_ballantyne: ME/CFS: It's so much more than just tired

kath_ballantyne

ME/CFS: It's so much more than just tired

Oct 23, 2012 22:39

Here are a couple of in depth articles on the PACE Trial in the UK. I have a lot I want to say about it but I just can't find the words. I'm angry about it. Really angry and it makes me feel sick the way this shit is being mishandled and the ridiculous stories that were printed in Newspapers ( Read more... )

me, health, fuck off world, cfs

Comments 6

nimnod October 23 2012, 19:16:28 UTC

Arg. I knew I had fibro, depression, IBS, irritable bladder syndrome and transformed migraines which caused short term memory loss and confusion. I didn't know they could LEAD to CFS. Fuck. Now I'm shit-scared its going to get worse!

kath_ballantyne October 24 2012, 02:28:37 UTC

I don't know that they lead to CFS as such. They just often turn up at the same time.
People I know either had both turn up at once or had CFS first and developed Fibro.

*hugs*
I didn't mean to scare you with it. There is a certain amount of fatigue that comes with fibro and depression. They both take it out of you and cause exhaustion.

nimnod October 24 2012, 06:16:01 UTC

That's comforting, thanks! Sorry to have got all freaked - I'm changing meds at the moment and it's hellish. I was on Lyrica which supposedly works on nerve endings and was working very well, but making me put on tons of weight, worsening my headaches, and making me struggle to stay awake at work. I've changed onto an antidepressant called Cymbalta which is supposed to help with fibro but is currently causing terrible insomnia and anxiety, and not helping with the fibro at all. I have irritable bladder and have had it for about 5 months now, all the time except when on the lyrica, and it's absolute hell. I don't know anyone else with fibro who's had it for this long, most people tend to have it in short bouts! Also that list of things for CFS was scary because I realised I have something from every category everything except the very severe fatigue and the immunocompromised stuff which came as a bit of a shock to see all listed together. Anyway thanks for the reassuring words.

blamebrampton October 23 2012, 22:50:00 UTC

I agree that there is an apparent failure of CBT and exercise programs to treat severe and persistent CFS, and while I don't think that's a reason to rule them out of research entirely, it's definitely a reason to stop pretending they're working ( ... )

kath_ballantyne October 24 2012, 03:02:33 UTC

I was a little pissed off at the trial and may not have been very clear with what I was trying to say ( ... )

blamebrampton October 24 2012, 04:40:05 UTC

I agree fully. From what I have seen of my own illness against that of some of my friends, there do seem to be two distinct patterns. On the one hand there's one that seems to often be a post-viral thing, which is the type I had, and which literally felt like my body saying, 'You know what? We need some time off.' I liken it to when I shattered my foot, it took a lot longer than expected to get over both things, but there was in each case a point at which I could say 'I am now getting better ( ... )