with Adam Boulton : Sky TV 22 May 1997
© Jane Colby
TV studio, another day. Why does a Dublin GP phone in to insult
patients? This is perhaps the most thorough and thought-provoking
media discussion I have taken part in to date, the day when the
Dowsett/Colby study on ME in schools hit the headlines. In these
excerpts from the 30 minute show, let's focus in on the patient's
voice, with names removed.
the music: Adam Boulton opens.
Yuppie Flu [OK,
we'll forgive him that]
is attacking schoolchildren now. But is it a sickness of the body, or
the mind? Good evening. I'm Adam Boulton. It's been called 'ME'. Now
it's officially CFS - Chronic Fatigue Syndrome.
to a report today it's reached epidemic proportions and now accounts
for over half the days missed through sickness, by school children.
The victims are absent from class for prolonged periods, sometimes
stretching to years, and their supporters are demanding an increase
in special tuition. […]
some doctors are still sceptical it's an illness at all. There are no
tests to prove its physical existence, other than the personal
testimony of sufferers. So how much is real, and how much imagined?
Is it merely an excuse, conscious or unconscious, for being feeble
and avoiding stress at school?
does it affect twice as many girls as boys and why is it worse in
some areas of the country than others? Above all, is there a
dangerous new illness in need of more resources to tackle it, or not?
me tonight are Jane Colby, who helped compile today's report, and
she's the author of 'ME - The New Plague'; Dr Tony Cleare from
Kings College Hospital in London [now
a professor of psychiatry];
and the psychotherapist Peter Bull, who's treated many ME sufferers.
Welcome to you all.
a controversial disease so I've tried to lay out the facts as we know
them. Can we even agree on terms, such as what we should call this
problem, and what it is? Jane Colby.Your
suggestion is what? This is a definable illness?
illness I'm talking about is a neurological illness. We know that if
you talk about chronic fatigue, that's an enormous number of people.
Within those you have got subgroups, and if you're talking about the
actual neurological disease of ME, then you've got to find a suitable
name. I think chronic fatigue syndrome is a confusing one.
to comment, both other guests agree that chronic fatigue syndrome is
'a broad definition' and that there is a definable 'syndrome' which
people need help to manage.
Is this something that anyone can catch? Or is it actually something
that depends on their psychological make-up?
believe it does have a viral base: 39% of the cases we found were in
clusters in the schools. […] There is a history, where you get a
bug going through a school and after that you get a cluster of ME.
They've been written about and they've been documented. That's one of
the reasons we started the study, because we wanted to see if that
was just an isolated situation occasionally or if it was a general
pattern, and it does seem to be a general pattern.
this point Dr Cleare states that 'we are not looking at one thing,
this is a syndrome' and says: 'the evidence isn't very good that we
can identify a virus that causes this'. But we then hear from four
callers describing their own cases. All severe, all following
joined on the line from Plymouth by
R, who first developed ME six and a half years ago. What, for you,
does your problem amount to?
Basically, it's taken away my whole life. I'm now mostly housebound,
if I do go out I have to go out in a wheelchair, I have no social
life, I've had to give up my education for the time being […] It's
the aftermath of doing something, the total and utter exhaustion,
both physically and mentally, the pain from the muscles, the severe
brain symptoms, the lack of concentration, the memory loss, it just
totally means that you can't function properly.
do you feel this is a disease that you could have developed like
measles or cancer or leukaemia? That something has come into your
body and taken it over, as it were?
I really don't know. I have no medical training whatsoever. All I
know is that I feel ill, that I am
It started with a virus.
is then discussed, and how her home tutor was withdrawn when she
F, in Spain. Hallo. What do you think about this?
I'm amazed that the medical profession still consider ME as some kind
of fantasy. It's not just in the mind, it is a virus, mostly in the
intestines. My son came out of university with an honours degree, set
up a very successful computer business, suddenly went down with ME,
which lasted four years, not a few months as some people are now
suggesting, and he had to face this thing. It ruined his business
completely and for four years he suffered, greatly suffered, and he
says to me: 'Dad, if I had to face this thing again, I'd top myself.'
for calling. N
in Belfast. Hallo. What do you think?
ten years ago, I took a flu-like illness. And from that, I developed
ME. It took me five and a half years to get out of it. And if anybody
says 'it's in the mind', I can confirm that it definitely is not. A
few months ago I took a similar illness and I was diagnosed as having
post viral fatigue syndrome. And I can assure you it is living like
thanks for calling. M from Birkenhead, hallo.
[female] The same thing can be said for my daughter in 1995. She
actually started getting better last summer and started to return to
normality, but then she fell ill again and she was diagnosed as
having chronic fatigue syndrome. She's going into school part-time
because just the effort of getting up in the morning and having a
shower is too much. But she's so desperate to keep in contact with
school because of her GCSE options. It's a very critical time in her
And you're convinced this is something from outside.
I think it's just all the viral infections. She just cannot fight off
any infection that she gets.
you are, four callers all convinced of the same thing. It started
with a viral illness, then it went on. Now that would suggest,
really, wouldn't it, that the medical profession is falling down?
That there's something it could identify which it's failing to
Dr Cleare commiserates with the callers: 'it's awful to hear these
stories'; he confirms that the illness is real and that 'undoubtedly
some severe viral episodes do trigger episodes of chronic fatigue
syndrome'; there is a need for more research, and for helping
patients. Peter Bull talks of helping rebuild patients' self-esteem
when they can do so little. And then?
Let's go back to the phone lines. J in Dublin. Good evening. What do
you think about this?
I don't like it at all. I'm a retired GP of 40 odd years in the
National Health Service and I cannot find anything in this, any
substance. I believe that they are all degrees of hysteria. Right
back to ME. If you look at the present condition of the country
today, you'll find that the young ones nowadays, all these lead on
eventually to court cases, to remuneration etcetera etcetera. In
other words, the country is suffering from compensationitis.
nonetheless, whatever the cause, for these people it is a severe
problem, it is severely disrupting their lives?
I don't know, I'm asking you.
I don't think so.
don't think so. OK J, thank you. You were laughing earlier, Jane
Colby, when I was talking about this professor in Princeton who
agrees with J there, that there is a strong element of hysteria or
psychosis. How can you actually refute what they say?
Because I'm in regular contact with people in the forefront of the
research, such as Professor Richard Bruno in the States, who does so
many MRI scans. You can see the brain. He says it looks as if it's
had a little shotgun taken to it, and if you compare it with the
brain stem of someone who's had polio, it's almost the same.
that is really where ME comes in, because that's actually describing
it as a brain disease. What does ME stand for?
Myalgic encephalomyelitis - there's a lot of argument about the
myelitis. What is interesting is that there are a massive number of
parallels with polio many years ago. I've looked back into that -
the flu-like illness that this guy on the phone line pointed out,
that was typical of what happened when people got polio. They got a
flu-like illness, appeared to recover, and then they went down with
the worst symptoms. This is exactly what's happening now.
Cleare states that 'these are all good hypotheses' but that brain
scans 'do not give us the answer' as abnormalities are found in other
conditions and in people who aren't ill. Referring to studies showing
evidence of polio-like virus in muscles, he comments that subsequent
studies have not confirmed this so 'we need to study it more,
we do. I'll come back to that. We then get into a discussion on
epidemics, and what we can learn from a survey 'asking schools
whether they've had a few cases'.
think you should point out that it's the largest survey that's been
done anywhere in the world and it's 333,000 pupils and 27,000 staff.
But I entirely agree, it shouldn't be down to people to do voluntary
studies, the figures should be officially collected.
If people do think they have a case in the family, what should they
Buy my book!! [Loud,
No, but seriously, it will help them!
gives out a support number, medical help is recommended by Dr Cleare,
and the producer is so fired up that we spend the next half hour
now, after the space of years, I look back and see how much has
changed, and yet how little.
are far more medical researchers involved. But - and what a big but
it is - how many are focusing on ME? How many are using the wider
definitions of Chronic Fatigue Syndrome or even broadening it right
out to chronic fatigue? Is the medical establishment now supporting
ME patients or imposing programmes of activity that make them worse?
Are they listening to the children who need education at home, or
forcing them into schools, so they relapse?
Are they listening to the parents? Or are they pointing the finger,
accusing them of damaging or neglecting their children, calling in
social services, taking them to court for condoning truancy?
- as Charlotte Bronte would say - you know the answers.
In the collegiate atmosphere of the Sky studio, we had all grinned at
the retired GP's beliefs. But oh! his poor poor patients, for whom it
is anything but a joke. And how did he get his ideas in the first
place? How many others agree? Only this year we hear that a European
doctor describes those who believe in ME as 'imbeciles'. That these
and others could be so ill-informed, so medieval in attitude, is
surely no accident. Someone is responsible.
it time, now, to introduce that overused word 'scandal'?