Consider The Evidence
© Jane Colby
Consider the evidence.
You've had what you thought was flu. Or something like glandular
fever. Or, you've had a stomach upset, a gastroenteritis. Or, you've
had a bad throat, a cough. Maybe you've had a combination of these,
or just some weird bug, perhaps something you hardly noticed, or
believed was a cold.
You expected to throw
it off and get on with your life. As we normally do with these
things. And maybe, to start with, you do. But in a short while,
something else happens. Something quite other than what you expected.
And this you don't throw off.
This mirrors the
pattern of poliomyelitis; an initial infection, an apparent
improvement, followed by the complications. Your bug was quite the
chameleon, a shape-shifter par excellence. It could have mimicked flu
if it chose, or glandular fever, it could have given you a bad
throat, a funny tummy, aches and pains, sneezes. It is versatile and
has many different presentations. So some people are told they've had
flu, some are told they've had glandular fever, some are told they've
had tonsillitis - you get the picture.
What follows is clearly
none of these. It's another stage, a terrible development from the
original infection. Your immune system didn't kill it off, it is
still engaged in the battle, and is likely to be for a long time.
Weeks and months later,
you still feel dreadful, worse than you've ever felt with other
illnesses. You don't recognise these feelings. Something's different
about them, truly different. Your mind tries to alert you to the
presence of injury, but you can't take it in. No more can anyone
else. You're not just unable to exert yourself, you're in pain, your
muscles won't work properly, they twitch and hurt, you fall
downstairs when your brain forgets how to put one foot in front of
the other, your skin burns and prickles, it can't bear to be touched,
yet half your face has gone numb. You ring the doctor in a panic. Is
it a stroke? You can't speak your own language correctly, or make
sense of what others are saying. You know what the words mean, but
they don't hang together. And it all takes so long to process. It's
as if your internal Broadband went down. You feel unsafe; for the
first time in your life, you can't trust your body.
Recognise any of this?
One day you struggle to
a local shop and find you can't count the money in your purse. Your
fingers buckle when you get home and try to cut bread. From now on,
you buy sliced bread, only to find you can no longer grip the can
opener to prepare what you thought was an easy lunch of soup and
toast. With an Olympic effort, you get at the soup and sit on a stool
as it warms. You eat your lunch, which tastes rubbish, and leave the
washing up for a rest. But you get sick of staring at days' worth of
crumbs on the carpet. So you get out the hoover, like Hercules.
That's more like it. You're normal after all. Relieved, pleased,
proud, you heave it back into the cupboard and collapse on the sofa.
You're clearly on the mend. It'll be fine.
It's not fine.
Soon, you're in serious
pain. Your muscles feel sore, inflamed inside. Suddenly, your heart
starts racing, it's tripped into a different mode and doesn't switch
back again for ages. What a relief when it does. But that's not
normal, surely? And you're ill. So ill. You couldn't say quite how
you know that. Your body is telling you many new things, things it's
never had to say to you before, and you're still not used to these
messages. But now you begin to take heed. Somehow you get to bed;
you'll see the doctor in the morning. Next day you wake not knowing
quite who you are or what the day is. You can't stand up.
This is not funny.
It's not material for a
comedian's jibe, nor a presenter's cheery: 'We must sort that one
out!' before moving on to the next feature. Oh yes, that's been said.
With no conception of the public health threat we are facing, and
that they are not announcing.
It's certainly not
amenable to exhortations to 'pull yourself together'. Or to confident
assertions from physiotherapists that riding a bike, or playing
tennis, will cure you in three weeks. Oh yes, that's been said too.
This is uncharted territory for you, perhaps also for your GP, your
relations, your neighbours, your boss, who's naturally asking when
you'll be back. You don't know when you'll be back. You just want to
be better and you don't care how. You start on the endless quest for
a quick fix, you start believing it when you're told it's depression,
or that you need psychological therapy; you pore over all those
clippings given you by well-meaning friends, stories of someone who's
found a magic 'cure' (and who, by co-incidence, is now selling it at
eyewatering rates) and you wonder, like the ancients thousands of
years ago: 'What did I do to deserve this?'
In the end you get a
diagnosis. Chronic Fatigue Syndrome. Chronic what? That can't be
right. Fatigue? I know what fatigue is. It's when you wear yourself
out, you sit with a cup of tea and in half an hour you're ready to
go. Or it's when you've worked long hours, you have a bath before bed
and wake ready for a new day. That's 'fatigue'. This is not fatigue.
Whatever it is, it's unfamiliar, alien. And, at last, you start
trusting yourself. You start believing in your own judgement.
And all this time your
body has been pleading: 'Let me alone please, just feed me, love me,
let me rest, try to find pleasure in something simple - the flowers
and the trees and the rain - endure the pain, ask the doc to check
out the ache in your chest, but don't bother me with trivia like how
you're going to afford months off work. I've got a life-saving job to
do here. It's going to take me some time. Read a book. Several books.
Well, OK, read the whole library, even if you can't hold the book or
focus for long, and keep forgetting the plot. I understand. I really
do. Get yourself a new life, a different one. It'll be restricted but
if you just let me work on it, I'll give it my best shot. You don't
have a choice really, do you?'
'Oh, you do. You're
going to let them put you through their latest exercise programme.
(Sigh.) Well, my advice would be, wait till I'm much better. Hopefully
I will be, if you don't let anyone meddle and make me worse. Deal?'
Sadly, how you're going
to afford months off work isn't trivia. It may not be your body's
priority, but it's yours. Where are your living expenses to come
from? You cringe at the idea of benefits, you feel ashamed to need
them. Worse, proving your need is the stuff of nightmares.
And if you're a child?
The law says you have to work. They don't call it work, they
call it 'school', but it's the same thing. Going to work. Some adults
can negotiate working from home. Try doing that as a child. You don't
fit the mould. 'You're anxious,' they say ('If you had my disease,
you'd be anxious!') or, 'she's got social phobia' ('But I miss
my friends!') or your mum's neglecting you, or maybe doing something
to make you ill ('She's what? She's the only person I can
trust.') Then they get really suspicious: 'Her mother's aggressive.'
Let's think about that. Would you approach a calf when it's mother's
around? Parents are supposed to defend their young from a
threat. That's what mums and dads are for. School is no place for a
seriously ill child.
But the system doesn't
recognise what's wrong with you.
Now surely, I'm being
unfair, aren't I? Surely, most professionals are kind and caring and
sensible. And - well - professional. Indeed, many are. If you're
one of these people, know that you are like gold dust. You will never
be forgotten throughout that child's life. I was head of a school for
nine years, I still work with teachers, and have just signed Mr Paul
Willsher's Tymes Trust Young Hearts Award certificate for which he
was nominated by his pupil, Amy. But equally, I am ashamed at the
things that are said to children with ME by other members of
my own profession: 'I don't care how much pain you're in, you're not
going home till lunch time.' 'You've trained your brain to be ill.'
And from a seven year-old's school plan: 'When child does not wake in
the mornings, mum is to carry child into school in her pyjamas and
teachers will dress her when she wakes and take her to class.'
In the words of a nurse
in training who got dragged into the child protection nightmare: 'We
are just shellshocked by it all. I read the 1997 Panorama
programme transcript and felt physically sick. We don't know what to
do and we're scared of all this.' She continues: 'I am absolutely
bewildered as to why this has happened. I have to wonder how an
illness can cause all of this and why the person affected and their
families aren't listened to.'
That's my point. That
is what this scandal has led us to. History has to put it right. And
the patient's voice is where we get many of our answers. The patient
is telling the doctor what is wrong. And the doctor must listen.
Did you notice?
Did you notice my
sleight of hand? I named this episode 'Consider the
evidence'. Of course, I was referring to concrete evidence, your
evidence, your own personal, grounded, real-life lived experience.
There are those who
would have you believe that this doesn't count - well, not for
much. That's because evidence-based medicine (the buzz-phrase
being sagely reiterated like the management-speak satirised in The
Office) is all about randomised controlled trials (RCTs), the
'gold standard'. Perhaps, in theory,
it is more reliable than a
collection of uncontrolled anecdotes from individual patients. In
practice, it's not necessarily reliable at all. Not according
to the former head of the Medical Research Council. Why? Too many
pitfalls. Too many ways in which the criteria used for the studies,
the processes involved in analysis of results (not to mention the
slant - one might almost say 'spin' - applied at the writing up
stage) can be subtly shifted till a pattern emerges that is
satisfying to the researcher. It's natural. Scientists frequently
have a hypothesis; often the data appears to prove it. But we tend to
see what we want to see. Researchers are just as capable of error,
bias and downright stupidity as other mere mortals. They are human.
There was a time when
doctors were placed on pedestals and it did them no good at all; they found it hard to confess when they weren't all-knowledgeable, in
case they slipped off. Now the pedestal has been moved. Now it's
researchers sitting up there. But they no more deserve worship than
any other profession. Wise scientists, like wise doctors, wise
teachers, wise parents, wise human beings, recognise that it is in
no-one's interests to ignore reality. 'Once upon a time,' posterity
will say, 'there was a school of thought which held that people whose
ME got worse when they exercised, got better by being exercised.'
The tragedy is that
sincere people, doctors and therapists who want to do all they can to
help, get sucked into the black hole of belief, even when the
evidence is before their eyes, even when parents are telling them:
'Doctor, it doesn't work.'
When you know how these
viruses multiply after exercise, it is chilling.
I'll deal with that in a future episode.
Let's come at this from
another angle. I was very moved back when World War I veteran Harry
Patch, in his last years, announced to the media that war was
legalised murder, and that leaders who wanted to go to war should be
given a gun and told to go fight each other. This man didn't need a
randomised controlled trial of weapons to know the horrific things
they do to a human body. He had seen it at first hand. He had the
authority of personal experience from which to judge, and from which
to speak and be heard. I didn't notice him being derided. He may not
have been able to eradicate war - that surely is the holy grail -
but he wasn't ignored, he was listened to, given a media platform,
and his evidence wasn't relegated to some sort of basement dump.
People with ME have the
equivalent authority, yet when they clearly describe their illness
and recount their personal experience of what it has done to them,
how they have seen exertion worsen their condition, how their bodies
just do not function, too often they find their real-life evidence
relegated to the lowest category of reliability. The basement dump.
This has to change.