© Jane Colby
we're discussing the media, here's a cautionary tale. I was once
phoned by the Daily
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
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.
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.
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?
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.
can't find the
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?
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.
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.
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.
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
I am reminded of the hymn:
Wider still and wider
Shall thy bounds
patients have had enough of the fatigue empire. They do not wish to
be part of it.
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.
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
nightmare we are 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
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.
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
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.
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.
has there been a public furore? That depends on what you mean by
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
programme and others. Unlocking the doors for me, they asked, 'Have
you seen The
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
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.
returned to the strangest thing. The British
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'.
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
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
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.
win some, you lose some. But I still consider the link between ME and
polio as unfinished media business.