The ME charities
are campaigning for early diagnosis for this year's ME Awareness week.
Is this an issue? This is our story which tells how late diagnosis
caused us additional problems.
I'm really not sure when it
started. My daughter, who we will call Emma, had not been "right" since
before she started secondary school. Emma had been complaining that her
joints hurt while still at primary school but I'd left it, assuming that
this was linked to growing pains and would disappear as she reached full
growth. Emma began secondary school in September 1999. By winter term
2000 her attendance was causing concern and we were sent a warning
letter from the school. By July 2001, she wasn't getting better and we
had to plan around her energy levels more and more, so we started on the
rounds of doctors. With hindsight, this was the beginning of CFS/ME and
was what the GP suspected, but didn't think to tell us. Unfortunately,
the diagnosis of ME is by elimination. If other conditions are
diagnosed during investigation, confusion ensues.
July 2001: Visit to
the doctor to check out the sore wrist that hadn't healed after a
trampolining sprain. The first letter is sent to the head of PE at
school asking for alternative arrangements for Emma's PE lessons, and
copied to the SENCo (Special Needs Co-ordinator), Head of Year and form
tutor. I was working in another local secondary school with SEN
children and knew all about lack of communication in schools.
Referral to physiotherapist and first appointment with CFCS (Child and
Family Consultation Services, the Essex equivalent of CAMHS). The first
blood tests were taken. By 2003 I had to hold down a child who was as
big as me for sample after sample, while the phlebotomists debated
refusing to take blood at all.
physiotherapy appointment to work on wrist problems - followed by
fortnightly sessions to try and increase strength and mobility of her
right wrist - and yes, she is right-handed.
December 2001 liver
scan to check function after raised bilirubin levels picked up by blood
tests - Gilberts syndrome diagnosed.
Emma started having weeks, rather
than days, off sick during December 2001
Christmas holidays 2001 -
intensive physiotherapy on wrist so that she could write
referred to rheumatologist as three months physiotherapy had not
helped - yet another letter, copied everywhere relevant, asking for
alternative PE arrangements for Emma. Another full week off sick due to
feverish cold type symptoms
April 2002 another
bout of intensive physiotherapy on her wrist to enable her to sit her
SATs and another letter requesting that she be excused from PE because
we prioritised doing well in exams above risking another injury! An
appointment with Occupational Therapy who assessed a fairly high level
of dyspraxic difficulties
May 2002 an
unhelpful appointment and assessment with CFCS. Their assessment of her
mental state was that Emma had a specific learning difficulty and
unlikely to enjoy her current school as there were few peers of her
ability (she is very bright). She would start meeting more compatible
peers as she moved up the education system. Also, they had encountered
a number of other children from her current school who had mentioned
bullying issues not being adequately resolved, as I was a governor,
could I feed this back to the head teacher? I did, to no avail. Guess
what! More letters to the school to keep them informed.
June 2002 weekly
sessions of relaxation therapy started - provided by CFCS.
August 2002 Emma's
rheumatology appointment - hypermobility syndrome diagnosed. The
implications are that it's very easy to damage joints and they don't
heal particularly well. The only recommended exercises are swimming,
Pilates and yoga, none of which were offered by the school.
September 2002 back
to school and letters to everyone relevant requesting an alternative to
PE for Emma as most of the syllabus was on the "don't do it" list;
another waste of effort and paper. The school decides to organise a 12
mile sponsored walk to raise the £50,000 seed money to allow them to
apply for specialist status. I write to the Head of Year asking what
alternatives are on offer for children who can't walk 12 miles. No
reply. Emma is discharged from physiotherapy, who have done all they
can and have also offered to write to the school to reinforce my saying
12 miles is too far for Emma. As an aside I've walked the Pennine Way,
twice and am not against exercise, but I was against making my child
sick. Several letters later, and reassurance that there were
alternatives available, my daughter completes the 12 mile walk on 27th
September. Emma has to take a week off to recover.
October 2002 sent
home from school - this became a weekly event. I'd get called out of
the school where I was working to come and collect my daughter. She'd
then spend a few days off recovering, go back to school for a day or two
and so the pattern repeated.
November 2002 wrote
to the PE department, again. Emma had been sent orienteering, even
though she had no kit and after all those letters. And yet again, she'd
had to take a few days off to recover. She was off sick for three weeks
at the end of November and into December, staggered through to Christmas
when she did nothing but sprawl and went back to school in the January.
another letter to PE requesting an alternative programme for Emma. The
school office tells me, while asking me to collect her, that Emma
shouldn't be doing PE because she isn't well enough - that's why she's
being sent home every week. I tell them, despairingly, that I know,
I've written trees worth of letters trying to arrange an alternative to
PE for Emma, but they're being ignored. The school office "discuss" the
situation with the Head of PE and finally, Emma is excused PE.
21st January 2003
Emma is sent home with "a virus" and except for an hour in February,
then later to sit exams, she doesn't return to school. She was in year
10 so missed 18 months of school. Without a diagnosis we had had no
acceptable reason for trying to excuse her from PE and the sponsored
So what did this "virus" look like?
The worst case of flu you have ever seen. A temperature that doesn't
abate, a child who can't stand or sit or swallow, can't hold a
conversation and can't concentrate on anything. And this went on for
weeks. At least four, but I lost count. By February I was working part
time because Emma was so ill that I felt terrible leaving her. I was
lucky that my work allowed me to bring work home, so I was going into
school for two days to do some of the teaching I was supposed to do as
maternity cover, and then more administrative work from home. It meant I
had the advantage of knowing how to access education for sick children.
With hindsight this could have been a relapse from the earlier
By April 2003, Emma could
concentrate for long enough to answer a question and could sit up for
around 10 minutes at a time, so I wrote to her school asking that she be
put on School Action Plus and that home tuition be considered.
Interestingly, the school had not followed up Emma's absence, although
by now it was three months. At a parents' evening, the SENCo suggested
that Emma might have ME. This was the first I'd heard of it and that's
when I started researching. The meeting to arrange home tuition was in
June 2003, by which time we had seen the paediatrician.
The paediatrician is a large, noisy,
dominating character - paediatrics is an interesting career choice for
someone who scares his students. He and I had an argument that reduced
the student to a heap with his head in his hands and Emma to tears. It
didn't help that my response to one of his edicts was "That comes from
the 1999 Chief Medical Officer's Report - the 2002 Report says ..." This
appointment finally gave Emma the diagnosis of CFS.
This was the second paediatrician I
had spoken to, the first wanted to repeat all the blood tests from a few
weeks before, the ones I had to hold Emma down for, and was suggesting
anti-depressants and a hospital stay before he'd even seen her. Emma
was now so noise sensitive that I couldn't listen to the radio at home
and the thrice-daily playtime at the nearby school would reduce her to
tears. She was also very light sensitive and had the curtains
permanently drawn. Bright lights or sunshine made her to weep with
pain. Hospital would be agonising.
We borrowed a wheelchair from the
Red Cross, bless them, to get to appointments, and to escape from the
flat we went out using my new toy, a bat detector. Fortunately there
was a roost just up the road that was accessible by wheelchair and bats
like it quiet and dark too.
Some time around May or June 2003 I
got a letter from social services asking me to contact them. In my
innocence I thought it was a follow up to our claim for DLA (Disability
Living Allowance), so from the disability team offering support. Not a
bit of it, my sister had reported me for suspected Munchausen's by
Proxy. The fact that she hadn't seen us for two years hadn't held her
back. So to add to the difficulties of dealing with the school, the
benefits system, a paediatrician from hell and a sick child, I now had
to deal with a social services investigation. Fortunately, I laughed it
off and suggested they check their files - we'd been there before when I
wouldn't play ball with my dysfunctional family and that social worker
had decided that I deserved sympathy: she found my family overbearing.
I heard no more about the investigation, just silence. But it meant
that I felt as if I couldn't contact Social Services for support in case
I reopened that particular can of worms.
We also had a visit from the medical
examiner from DLA. I'd read such horror stories of DLA being turned
down that I pushed Emma to overdo it the day before so he could see how
ill she really was. It was a mistake. She was back to having full body
spasms, having to be held down on the bed so that she didn't
involuntarily flick herself off on to the floor. It also took weeks to
Another little humiliation was the
monthly visit from the Educational Welfare Officer. He was pleasant
enough, but the permanent checking up by officialdom was not. It also
used energy better spent constructively.
This isn't all doom and gloom. Now,
in April 2005, my daughter is much better and is doing her best to "pass
as normal" at college. She's attending part time, taking 3 AS levels to
add to the 5 GCSEs she passed well last summer. It has taken all this
time inching forward to get this far, including over a year using a
wheelchair. We passed on the GET (graded exercise therapy) and CBT
(cognitive behaviour therapy), which was all that was on offer and
relied on pacing and diet as treatment - going it alone with the support
of the ME charities.
I gave up work in July 2003. I had
to take too much time off to be there for home tuition and appointments,
but returned in February 2005. While unemployed I studied art and yoga
at the adult education centre just up the road.
I am still the SEN Governor for the
school. I guess I hope that I will remind the staff of the issues
around my daughter and maybe, just maybe, it won't happen for another
We are lucky. My daughter is recovering. Many don't.