* I've changed the blog address from www.sarahsworld.me back to the original (badly chosen, but I'm stuck with it) address of www.kiwikchat.blogspot.com .

This means that some links to older posts and old links from other sites don't work. :(

Friday, November 11, 2011

What's in a name?

I overheard something today at the doctors which got me thinking.  (Yes I was getting an IV, no I wasn't in the same bed as the one Large Dad sat on.)

Nurse: So how are you going, how are your legs?

Mr Eastern European: A liddle bit achy, not so bad, not so good.

Nurse: cluck cluck (yes she actually clucked) But overall how are you doing?  Is your health generally alright?

Mr Eastern European: sigh, I suppose so..

Nurse: Do you have any other problems?

Mr Eastern European: yes my wife.

Me: cough cough

Nurse: Anything apart from your wife?

Mr Eastern European: No.

He was serious, the cliched response in this case was true.  He then went on to talk about his wife's Alzheimer's and how looking after her was getting to be more than he could cope with.  

Alzheimer's disease, I shuddered.  It feels like it is something that might actually happen to me, not just to other people.

I pondered this for a while.  Everyone gets a bit absent minded at times but we know that Alzheimer's disease is so much more than that.  Everyone also gets a bit fatigued at times so why is me/cfs so misunderstood?

One answer is that Alzheimer's has been well branded.  It has one name that has come to represent the devastating complexity of the disease not just one of the symptoms. Would something called Chronic Absent Mindedness Syndrome or (C.A.M.S) be as well known?

The naming of me/cfs is one of those topics that can easily lead me into a rant and I don't want to bore you, as I'm sure you've heard it all before and probably have your own opinion on the subject.  So I've decided to be proactive for a change and ask for your help.

Can you please take the time to fill out a little survey?

It's really short (4 questions).

Click the link below and have your say.

What's in a Name?

Results from this survey will be displayed here on the 11th of December 2011 and also sent to me/cfs organisations and researchers around the world.

Below is the full link, in case you want to cut, paste and share :)


Thanking you in kind anticipation.


  1. Damn I wrote a long comment and then lost it!
    The gist... I think it is great that there is so much research going to help cure breast cancer etc but there is so little effort being put into solving the problems of so many women whose lives are so adversely affected by things like ME/CFS and FMS. Too often we are accused of faking or malingering when really the problem is that the Great God, Medicine has yet to find a way to identify our problems and is even further from finding any kind of cure.

    I'm sorry to say we are both suffering for this.

    (PS I blogged on this topic (well similar) too a week or so ago)

  2. Hi,
    Bummer about the lost comment, I hate when that happens it's very deflating. I wish we were faking. In fact I aspire to get well enough to be a malingerer. :P

    Hope you are feeling a bit better.