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Episode Three

If, Imagine, Definitely

Copyright © Jane Colby
Preamble

While we're discussing the media, here's a cautionary tale. I was once phoned by the Daily Mail needing a last minute quote. 'There had been a new report on ME. Did I welcome it?' I said I hadn't seen it yet. 'But did I welcome it?' I said I couldn't say what I thought of it until I'd seen it. 'But did I welcome it?' Oh, for goodness sake: 'I welcome the fact that people are studying ME and writing reports about it, but I can't say what I think of this one till I've read it.' Next day the piece read: 'Jane Colby welcomed the report.' On the front of the Daily Mail.

It took a while to live that one down. When people say something in print, we tend to believe it. When they say it often enough, other people repeat it. And that's why we're in the mess we're in - because of something people keep saying.

If

If I hear one more person say: 'We don't know what causes ME' I shall probably explode. In The Hunting of the Snark one of Lewis Carroll's characters announces: 'And what I say three times is true'. That is how myths are born. Say them often enough and people come to believe them.

Since the middle of the 20 century we have had a very good idea of what ME is; in ME - The New Plague I went into it in some detail. Yet how many times have you heard or read that mythical statement?

Of course, it's true that we don't know – and can never know – what causes Chronic Fatigue Syndrome, because Chronic Fatigue Syndrome isn't a disease. It's an artificial construct (a phrase I coined some years back, which caught on because it's accurate); it was originally a collection of symptoms used for research. Which might be all right if it had stayed there, restricted to an interesting academic exercise in an ivory laboratory. But it hasn't. It's got taken into the clinical arena (the GP's surgery, the consultant's clinic, the students' training programmes, the regional fatigue clinic) where untold damage can be done.

We can't find the one cause of CFS any more than we could find one cause of Sneezing Syndrome, if we were so perverse as to invent it. (Someone hasn't, have they? I wouldn't be surprised.) How many conditions make you sneeze? Or we could invent Afternoon Doze Syndrome. The cause? Perhaps you never get more than two hours' sleep a night, or you might have narcolepsy, or you could be very traditionally Spanish (Siesta anyone?). Then we could identify all these causes, list them, see which patients have which condition, and call it phenotyping and genotyping. That sounds really impressive, doesn't it?

This is a great game. We make a list of symptoms, find a suitable name - how about Rather Thin Thighs Syndrome? (I wish), call it a heterogeneous condition (that just means there are lots of conditions under that name) then split them up again into their original components and there you are. Job done. Papers written. Professorships earned. So, here are some components for Rather Thin Thighs Syndrome (RTTS) for which I am sadly not the correct genotype: the patient could a) be slimming b) have a terrible wasting disease c) be suffering from anorexia nervosa d) be living through a famine or e) just be naturally thin. I wish.

Absurd examples like these serve to illustrate an important point. Hidden within umbrella terms may be problems that will need urgent treatment, and which must not be missed. Then there will be others for which no treatment is available, some for which no treatment is necessary, and some which are relatively simple to put right.
But none of them – NONE OF THEM – are diagnosed when only the umbrella term is used. This is the tragic, unscientific nonsense of a situation we have found ourselves trapped in. For a 21st century advanced society, this is Carroll's Looking Glass Land.

There are those who argue that fatigue as a single symptom observed in many conditions is worthy of research in itself. They maintain that it will be helpful if we understand more about the body's mechanisms of causing fatigue. Perhaps we can extrapolate from one disease to another, finding common pathways leading to fatigue in all sorts of illnesses. Fine. But what has that to do with ME? Do people with ME have 'fatigue' at all? What people object to is being treated (and given treatment) as if they all had some kind of generic fatigue which will respond to a bit of fitness training. I have heard of 'chronic fatigue' practitioners warning: 'There is no treatment that doesn't have side-effects.' Oh really? ME patients know a get-out clause when they hear one.

Key fact: those with classic ME, trapped under the chronic fatigue label, don't even recognise the term 'fatigue' for what has happened to them. Fatigue doesn't come close to it. They are trapped in a body that doesn't function. Severe cases involve bouts of paralysis; as the child once said: 'My legs won't do what I tell them to.' Out of the mouth of babes. And when they do manage to get their muscles to work, they become ill after the event, sometimes severely.

I am reminded of the hymn:

Wider still and wider
Shall thy bounds be spread...

ME patients have had enough of the fatigue empire. They do not wish to be part of it.

Imagine

Imagine that, under the noses of the world's public and the international media, one of the worst medical travesties in our history has been quietly going on, from decade to decade, through the late twentieth century, into the twenty-first, creating empires and professorships, and dragging even the best and most conscientious doctors along in its wake – not to mention tens of thousands of patients.

And imagine that, like the maze at Hampton Court, there is a path connecting the signs and symptoms of this disease, and that some joker has come in the night and stuck up a collection of signposts pointing in conflicting directions, reading: 'This way', 'That way', 'The other way', 'No - this way after all' so that virtually no-one can connect with the real route, or find the centre of the maze, or discover the way out. Lewis Carroll would have recognised this landscape too, for this is the Alice in Wonderland nightmare we are in.

Fact One
In 1996, in the original ME – The New Plague, written during my long convalescence from severe ME, I argued that the 'mystery' of ME was no mystery, merely a myth, which I debunked. I was fortunate to have met arguably the foremost microbiologist in the field, who had diagnosed me and asked me to work with her. In the book, I proposed that ME springs from a variant poliomyelitis-type infection. Just as paralysis is a dreadful complication of poliovirus infection, so ME is a dreadful complication of polio-related viruses. Indeed, one of its former names was atypical polio, for very good reason. But no-one had officially accepted that classic ME is a polio variant;no-one would use the name. We might have vaccinations by now if they had. My own virus was part of the polio family, discovered in my gut by researchers. My diagnosis was ME. Did you know, that outbreaks diagnosed as polio have not just been caused by viruses named 'polio', but also by their close relations? Yes, all these viruses are part of one family. The entero (or gut) viruses. I'll come back to that later, including how to discover them in a patient's stomach.

Fact Two
A year after the book, my five year study of ME in UK schools, carried out with my microbiologist friend (the famed Dr Elizabeth Dowsett, for those not familiar) revealed that ME was the biggest cause of long term sickness absence from school – far bigger than cancer and leukaemia combined – and it appeared in clusters. Indeed, the study, the biggest in the world, was sparked off by a documented school outbreak. We were seeing the pattern of an infectious disease. That's what led to the Adam Boulton show.

Put these two facts together, and what do we get? A scandal of international proportions. For those fortunate enough to have no personal experience of ME, let me say immediately, scandal is not too strong a word. And I don't use it lightly.

Children have, as always, suffered disproportionately. They don't just suffer from the disease, but from disbelief and cruel treatment. Catching a devastating virus, many become disabled, like those children who caught the classic form of poliomyelitis, only to be dismissed as not physically ill at all. Of course they can't get to school. It's a no-brainer. But, mislabelled as cases of school phobia, victims of overprotective mothers, or of harm at the hands of their parents, they are still being forcibly exercised into disability by a dogma that belongs in the dark ages. Your muscles won't work? We'll cure you by force. I don't think so.

So has there been a public furore? That depends on what you mean by 'furore'.

Definitely

Definitely there was a furore in the press, over our study. With my camera-shy colleague going to ground, asking me to front it up (oh, Betty!) I was caught in a media scrum; almost every news channel in the space of one day. And what a day, truly a day when the Patient's Voice was heard. The night before, BBC and ITV came to my home to record. Early next morning I was at BBC Essex for 'down the line' interviews; the Today programme and others. Unlocking the doors for me, they asked, 'Have you seen The Guardian?' We had made the front page: 'Schools swept by ME Plague'. On ITN's lunchtime news the late Carol Barnes interviewed me in depth. Sky sent a car for their evening show; from Essex to Westminster and back. On the journey, we stopped to do Drive Time. This was no small story. But without all these special provisions, it would not have been physically possible. I had to turn down Richard and Judy; by then I was in Southern Ireland for a rest, a book reading, and a meet with the Irish press.

I returned to the strangest thing. The British Medical Journal had appeared to react hysterically, filling pages with criticism, both of our findings and of me personally. After much fuss, they printed a 450 word letter from Dr Dowsett and myself which they headlined: 'Journal was wrong to criticise study in schoolchildren'. Data on 333,000 children, we wrote, could not be so easily dismissed. Things then got surreal. I was commissioned by an American editor to write the story (US-style) for a collection called That Takes Ovaries! Bold females and their brazen acts. In 2009 it was reprinted for the University of Wisconsin, Michigan, in a US college textbook: Women's Health: Readings on Social Economic and Political Issues. The chapter is 'Politics of Disease, Prevention and the Environment'.

So much for the media furore over the scale of childhood ME, until then unaccepted by the medical Establishment. But where is the furore over the link with polio? Where is the furore over the children, their horrific treatment, their punishment for having the temerity to frighten doctors with the severity of their illness? Severe ME is an in-your-face spectre, a spectre of childhood disease thought long buried.

In the late 1990s, I worked on that, in partnership with a television producer. It was commendable of the press to major on our schools study, but they had so far shied away from the other half of the equation, the scandal of a dreadful infection plaguing families, schools and communities, yet still not a notifiable disease. We were invited to pitch the story to the Channel Four Features Editor with a view to commissioning us to make a Dispatches programme. The interview lasted an hour. In the end, it was a reluctant no. They seemed concerned about dipping their toes in a potential whirlpool; perhaps it's no coincidence that Channel Four was the only major news channel not to cover the schools study.

You win some, you lose some. But I still consider the link between ME and polio as unfinished media business.

Now go to Episode Four