The Daily Telegraph 02.04.04

I am losing my youth to ME


Until she was 12, Jane Fawcett was a sociable, sporty girl - then,
out of the blue, she fell ill. Now 17, she describes the long hard
road back to school.

When I was 12, I was just the same as any other girl. I was a member
of the school and local hockey teams, played for a local football
team, was a member of the Reeth Junior Band and a local scout group
and went to rug-making classes. There was only one week night when I
was not at a club.

This all changed, though. At the beginning of 1999, I had lots of ear
infections and then, in April, I suffered a suspected appendicitis. I
was first struck with ME that September, when I was starting Year
Eight. I had to go home one breaktime because I could not carry on
with the rest of the day. I felt really tired and was suffering from
ear and throat ache. I didn't make it back into school until nearly
two months later.

The doctor, who was covering for our GP, said I should just go back to
school even though I hardly had the energy to stand up. All I could
do was wake up late, then make it downstairs to the sofa and just lie
down. After an hour or two, my mum would bring my clothes downstairs,
so that I could slowly get dressed. I remained on the sofa watching
television, only getting up to go to the loo and sit at the table for
a family supper. At first, I could barely eat.

When our GP returned, he diagnosed ME more or less straight away. We
did not believe what he told us, although we had every faith in him,
and we asked for a second opinion. But that turned out to be the
worst thing we could have done. The paediatrician that I went to see
believed that the only thing that was wrong was a phobia about
school. He suggested that I see a physiotherapist once a week for
half an hour. The physiotherapist gave me too much to do, so I
literally had to be carried home. When I managed to do whole days for
half a term, I went back to see the paediatrician. He believed that I
had recovered from my phobia and discharged me.

I managed a good patch at the end of 2001. The head of my year, Miss
Merckx, helped me by holding a little group for some of my friends
and me during registration once a week. We had a biscuit and
discussed things that my friends could do to support me. This really
helped my friends to understand my illness. Miss Merckx also got some
religious studies work for me to do once a fortnight when others did
PE, because I had missed all the lessons.

After the Christmas holidays, I went back to school for three lessons
and had to go home again. We then spent 11 weeks trying to get home
tuition for me, but the outbreak of foot and mouth disease did not
help because we live on a farm and the home tutor couldn't come to
the house. So I had to go into school to have the tuition, but I did
not find the tutor up to the same standard as my normal teachers.
When I brought some maths work to do one day, she was unable to give
me the help I needed. When the review came at the end if the year, it
was decided that I would go back to school full-time
after the summer.

During the holidays, we read an article in a local paper about Dr
Speight, who is a leading paediatrician in ME in Durham. He gave us
the name of the best paediatrician at out local hospital,
Northallerton, for ME, who is Dr Dammann, and we went to see him.
Compared with the first doctor we saw, he was a great improvement.

The symptoms that you have as a sufferer of ME vary from person to
person. I suffer from headaches, earache, a sore throat, aching legs,
arms and shoulders, concentration lapses, inability to sleep some
nights and tiredness. One day, I can feel brighter and, the next, I
might feel worse because I have overdone things the previous day. We
can no longer plan events in advance as a family, but have to see how
I feel each day. If we are going somewhere, I have to rest for a day
before and afterwards.

Suffering from ME means that I can't eat citrus fruits, caffeine and
processed foods. I take a lot of supplements, which have helped. These
include evening primrose oil, vitamin C, kelp, zinc, echinacea and
omega-6 fish oils. I have been going to see a homeopath for a long
time now, which has helped a lot as there is nothing that the doctors
can do for the symptoms.

At the beginning of my GCSE course, I managed three full days in
school, but afterwards, my legs hurt so much from walking around that
I cried continuously for a few nights. When we contacted the
paediatrician, he suggested that wheelchair would help. We contacted
the school about this and I wasn't allowed to go to school until we
had a meeting with the head teacher to discuss it. The school nurse
and head teacher were not in favour of the wheelchair.

However, they suggested I might like to cut down on the number of
subjects That I would take for my GCSEs because you really only need
five to get into sixth form or college. Reluctantly, I decided to
give up textiles, which gave me some free lessons at school so I
could either rest or catch up on work. After nine months of struggle,
it was finally accepted that I would need to use a wheelchair after
all.

A classroom assistant helped me by pushing my wheelchair, taking
notes when I was tired, supporting me in some lessons and collecting
work that I had missed. I have had a lot of really considerate
teachers at school over the past few years, who have been willing a
help when I have been stuck.

I joined the Association for Young People with ME and the Tymes
Trust, which are two organisations for children with ME. They both
give a lot of support to sufferers and their families, send out
newsletters and organise schemes that unite ME sufferers, including
arranging penpals. Through this, I have a great many friends in our
area and all over the country who are in the same situation. There is
also an ME support group in Northallerton, where we discuss problems.

I took my GCSEs this year, with the help of special arrangements so
that I could have breaks during the exam to keep myself going. After
a mix-up with one of the papers, I had a bad relapse and had to miss
some of the exams. We had great difficulty getting a medical
certificate to cover the ones that I missed, because we had to see
the stand-in GP who does not believe in ME.

When my results came through, all the hard work for the past two
years and our efforts to get a wheelchair paid off. I got an A*, two
As and six Bs. My results enabled me to return to my school's sixth
form, and I am now studying art, maths and English language as AS
level. I am managing to attend school more now.

A lot of my friends made new friends while I was absent, but I have
two really great mates, Anna and Ceri-Jayne, who have helped me and
stuck by me. My family and I just hope that, one day, I will improve,
be able to live the life of a normal teenager and catch up on all the
years that I have missed out on.


Association of Young People with ME, tel: 01908 373300 or see
www.ayme.org.uk

Tymes Trust, tel: 01245 401080 or see www.youngactiononline.com


ME: the facts

It is estimated that more than 25,000 children under the age of 18
suffer from ME (myalgic encephalomyelitis) in Britain. The symptoms
that most commonly affect young sufferers are acute fatigue,
headache, neurological disturbance (dizziness, disturbed balance,
concentration lapses and poor temperature control), insomnia, aches
and pains, and depression.

ME was officially recognised by the Department for Health in January
2002, but for many years, a large section of the medical profession
refused to acknowledge the condition. Some GPs are still reluctant to
diagnose ME, claiming it is just a convenient label for a range of
psychiatric illnesses. Young sufferers are often told their symptoms
are caused by a phobia, anorexia or depression.

Wendy Holloway of the Association for Young People with ME says that
the children she works with are desperate to return to school, but are
debilitated by the disease. They also suffer from feelings of
isolation, because they are unable to socialise with their friends.

There are three ways of managing the disease: cognitive behavioural
therapy, graded exercise and pacing, which involves learning to
balance the amount of energy you expend with rest breaks. The latter
is the most popular among young people, as it affords some
opportunity for them to regain control of their lives.

Chloe Rhodes