When I was a kid I wrote into ‘the Gusher’ aka the Daventry Express, I wrote about the apalling lack of facilities around for kids who had no money and nowhere to go – I wrote it in response to a person who complained about the gangs of kids hanging around the end of their street, (the same kind of thing I complain about now – though to be fair the gangs I hung around with didn’t throw things or attack people) the next thing I know there’s a double page spread featuring me talking to various council members and other kids my age, that was the start of my summer of fame – I was in the paper more than I was school I think, 1992 was a good year *grin*

Here’s hoping my latest letter to the sunday times doesn’t have the same effect – I could well do without that kind of notice these days, it caused enough hasle back when I was 16 at 30 it doesn’t bear thinking about!

Anyhow, this is the letter I emailed out last night:

With regards to this article on Sunday 7th January 2007, specifically the response to the question on CFS as posed by EW from Brighton.

There is a LOT more to over coming CFS (Chronic Fatigue Syndrome) than the use of mild anti-depressents – and the struggle to keep going is a daily feat of no little courage in some quarters.
It is a truly terrible illness that is all but ignored by a large percentage of the medical profession.

Recovery is a long and slow process hampered by the misinformation that abounds within the NHS, the recent NICE guidelines are a joke and they seem unable to grasp the possibility that this is a physical and not a mental illness – despite all the research to that effect, research may I add that has been wholly funded by charities.
Isn’t it amusing that the government (mainly male) can authorise a research grant of around £2 million on a cure for male baldness but not a single penny is spent towards researching an illness that costs them at least £6 billion a year in benefits and medical costs and affects three times as many women as it does men?

How does baldness wreck a persons life to the extent they are unable to function?
How does that justify a £2 million grant from taxpayers money and yet an illness – yes an actual life destroying, and in some extreme cases, life threatening illness, merits NOTHING?

I worked on the security team at Manchester University Students Union for 6 years and was damned good at my job until I became too ill to work.
Even on my worst days with this illness I had that inner confidence, a core belief that no matter what I could still look after myself enough to keep safe and out of trouble.
That confidence went the night I had a CFS attack whilst in a club celebrating with my family. I ‘crashed’ in the seating area just up from my brother and his girlfriend, as I lay there listening to the music and the hum of voices, I felt a pair of hands touching me intimately and someone kissing me all over my neck and I couldn’t do a thing to stop them – I wasn’t drunk (I don’t drink) I was just too weak and fatigued to move or defend myself.
In that second my whole world view changed – it’s taken me a long time to realise that I can no longer look after myself. Something important has been taken from me and that hurts. I haven’t been to a club of any kind since that night.
I’ve suffered with this for nearly 3 years now but that was the first time I’d ever felt truly vulnerable and helpless as opposed to merely embarrassed by my ‘sleepy fits’ and general physical malaise.
I look healthy and normal to everyone – even members of my family disbelieve I have anything seriously wrong, but they don’t see me on the days I need carrying to the bathroom or on the days I can’t even construct a sentence because I’ve practically forgotten how to speak.

This is the true curse of CFS, not that it’s a horribly debilitating illness – it’s the fact that it’s a hidden illness that fluctuates both in severity and frequency.

..and that’s coming from someone who isn’t severely affected – there are people who haven’t seen the outside of their bedrooms for YEARS, people who live alone and basically starve for days at a time because they are too fatigued to get food for themselves. I’m one of the lucky ones – I’m only bedridden for approximately 3 days out of 7, I can leave the house at least 2 or three times a week without suffering too dearly for the exertion and I have a loving partner who makes sure I eat and rest and don’t get too bogged down in despair over the situation.

Forgive me if I come across as a little emotional but seeing my condition belittled in print by a practising doctor obviously has that effect on me.
Perhaps your ‘Dr Know’ can now offer a more in depth response – or at the very least directions on where to look for more information, if he or she is stuck for these reference points perhaps these websites can offer a little more in the way of information for him:

http://www.afme.org.uk/

http://www.25megroup.org/

http://www.meresearch.org.uk/

http://www.cfsrf.com/

and for those of you willing to read what it’s really like for people with this illness then look here:

http://www.investinme.org/mestorygallery1.htm

I know it’s a bit strong but it’s not lying – everything i’ve said in that letter is true – that’s the rotten thing about it, I wish people were more aware of this illness, it’s more insidious than cancer, it can be the cause of death and yet there is no treatment or cure and very little research into gaining either, yet all people seem to know about it is that the sufferer feels a bit tired all the time.

It’s SO much more than that! The thing is, unless you’ve seen or felt the effects you’ll never understand and because of the kind of illness it is it will never be high profile, the people who could explain it most clearly just don’t have the energy for a campaign of that nature and people aren’t interested in hearing about something without a celebrity or 5 attatched to it.

Sadly that’s just the way of the world these days so what can one little girl like me do?

If any of you feel like helping out a little, why not email the sunday times yourself – every little helps, who knows – if enough of us write in it may get a little print and we could see some kind of positive and informed response.. for a change.
letters@sunday-times.co.uk