By Jane Colby, Executive Director of the TYMES Trust
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.' What?
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.