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ME - The New Plague 2


Episode Two

Tonight with Adam Boulton : Sky TV 22 May 1997

Copyright © Jane Colby

Another 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.

Cue the music: Adam Boulton opens.

AB Tonight: 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.

According 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. […]

But 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?

Why 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? Call me.

Joining 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.

It's 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?

JC The 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.

Asked 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.

AB Is this something that anyone can catch? Or is it actually something that depends on their psychological make-up?

JC I 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.

JC I 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.

At 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 infection.

AB We're 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?

R [female] 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.

AB And 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?

R I really don't know. I have no medical training whatsoever. All I know is that I feel ill, that I am ill. It started with a virus.

Education is then discussed, and how her home tutor was withdrawn when she turned sixteen.

AB F, in Spain. Hallo. What do you think about this?

F [male] 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.' [...]

AB Thanks for calling. N in Belfast. Hallo. What do you think?

N [male] Right, 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 hell.

AB OK, thanks for calling. M from Birkenhead, hallo.

M [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 schooling.

AB And you're convinced this is something from outside.

M I think it's just all the viral infections. She just cannot fight off any infection that she gets.

AB Well, there 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 identify?

Here 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?

AB Let's go back to the phone lines. J in Dublin. Good evening. What do you think about this?

J [male] 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.

AB But nonetheless, whatever the cause, for these people it is a severe problem, it is severely disrupting their lives?

J Is it?

AB Well, I don't know, I'm asking you.

J Well, I don't think so.

AB You 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?

JC 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.

AB Well, that is really where ME comes in, because that's actually describing it as a brain disease. What does ME stand for?

JC 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.

Dr 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, clearly'.

Indeed 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'.

JC I 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.

AB If people do think they have a case in the family, what should they do?

JC Buy my book!! [Loud, general laughter] No, but seriously, it will help them!

Sky 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 talking off-air.

And now, after the space of years, I look back and see how much has changed, and yet how little.

There 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?

Reader - as Charlotte Bronte would say - you know the answers.

* * *

Note: 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.

Is it time, now, to introduce that overused word 'scandal'?

Now go to Episode Three