Action for M.E.


'Don't say nothing  if it ain't worthwhile'

Stacy Hart has wanted to make it in the music business since she was 13
years old. While a decade with M.E. has limited her options, she gave up
waiting for better times and resolved to record her first CD. The result,
'Mama Chill', includes a powerful track about the problems she's had getting
support from the medical profession. This is her story.

Music is all I know; it's in my blood. As a kid I used to enter talent
contests with my electric guitar. I found as a teenager that my rock chick
look either went down a storm or was too ­ shall we say 'different' from the
sweet and wholesome singers I was up against. I won some, lost others, but
it gave me good experience.
Now it takes all my energy just to leave the house. When I got sick in my
early 20s I struggled to hold down my day job in a newsagents', just holding
on by my fingertips. Too weak to walk, I'd be driven there and back by my
mum. She also collected me at lunchtime so I could lie down for an hour on
the sofa before dragging myself back to work where I'd lean on the counter
trying to remain upright.
Creative misdiagnoses
My GP kept saying there was nothing physically wrong with me and we needed
the money so on I pushed. But the last six months as my vision became
blurred and my words more slurred, I became really frightened about what was
wrong with me. 
Finally my sister took me to hospital where the doctor took one look at my
punky hair and slurred speech and said I had all the symptoms of a drug
addict! He refused to accept that I didn't take drugs and said if I wouldn't
come clean about my 'habit' he couldn't help me.
I went back to my GP who eventually referred me to a neurologist in London.
I really got my hopes up during the year-long wait for my appointment so was
surprised when, after checking my reflexes, the doctor asked me to breathe
very quickly. I did as he requested but soon felt quite ill so  asked if I
could stop. His diagnosis for all my exhaustion and pain was
hyperventilation. 
I went back to my GP whose words were: 'When are you going to accept that
there is nothing wrong with you?' I couldn't, because I knew he was wrong.
During a week's admittance to another hospital for investigations, I went
for days without food, awaiting an exploratory procedure that kept being
delayed. By the fourth day I had episodes of paralysis and failed to respond
to stimulation of my foot reflexes. My mum was incredibly worried about me
but despite neither running tests, or talking to me about my symptoms, the
ward sister told her I had depression. 'But she's never depressed!' fell on
deaf ears.
Fourth time lucky 
Finally I happened to see a different GP who asked if I'd been referred to
an M.E. consultant yet. Well...no. It was worth another long wait for the
appointment to hear the words: 'I believe you' from the consultant at
Coppetts Wood hospital. He diagnosed M.E./CFS, and having little in the way
of treatment to offer, recommended I try meditation.
Six years after becoming ill, at least I had a firm diagnosis: not
depression, drug addiction or hyperventilation, but M.E. The GPs at my
practice have grudgingly accepted this diagnosis but my doctor recently
said: 'It's been scientifically proven that M.E. is a psychological illness
­ there's no physical basis for it.' My passing out in the waiting room
obviously didn't count for much.
I now avoid going to the GP's surgery unless an episode of stomach pain and
fever forces me there. There's nothing they can do for me.
I have had real help from some unlikely quarters though. After five years on
an antidepressant called Motival, I was worried about dependency and wanted
to come off it. To help the transition, I was put on Prozac in addition to
the original drug but within 24 hours felt suicidal.
Medics at the psychiatric unit my mum and dad took me to couldn't believe
I'd had M.E. for so many years without being offered any help, and reassured
me that my sudden suicidal feelings were due to an ill-advised drug
combination. They wanted to help, but seeing no signs of mental illness,
there wasn't much they could do.
Help ­ off the record
Unofficially, however, the psychologist there did help me get a place on the
waiting list for an M.E. clinic that St Albans' hospital were hoping to set
up. While the clinic sadly died a death due to lack of funding, I am now
part of a small group of people with M.E. being supported by a team there
including a physiotherapist and occupational therapist. Their plan is to put
me on a structured programme of rest and activity which I hope will help.
I've always believed I could get better but it has been hard to live with my
wings clipped, my social life so limited and my confidence deeply dented by
everything that's happened.
Then one day I realised: If this is how it's going to be, I need to do
something now or I'll be drawing my pension and still waiting to get well
enough to sing again. I've always wanted to record my own rap demo and after
saving up for a year, I managed to find a recording studio I could afford.
When the producer heard my stuff he offered to record three tracks for the
price of one, letting me spend two hours in the studio at a time with days
off to rest in-between.
It doesn't matter about my dream of a record deal anymore; achievement and
success mean different things to me now.
Doing the three tracks and getting the CD off to DJs and radio stations
provoked a relapse that left me housebound for a time but it was worth it.
Just doing something that gives me so much pleasure has been fantastic. If
the magic recording contract never comes along at least I can look back and
know that I gave it my best shot.
I'd like to thank everyone at AfME for your struggles on our behalf,
especially as many of you are battling the illness yourselves. It's you that
drive us, offering hope and making us realise that better times are on their
way.