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BRITISH BROADCASTING CORPORATION
RADIO SCIENCE UNIT
CASE NOTES
Programme no: 10 - ME
RADIO 4
TUESDAY 06/11/07 2100-2130
PRESENTER:
MARK PORTER
REPORTER: ANNA LACEY
CONTRIBUTORS:
ESTHER CRAWLEY
ANNA GREGOROWSKI
ANNA HUTCHINSON
PRODUCER:
PAULA MCGRATH
NOT CHECKED AS BROADCAST
AMY
Before my ME I used to go out with my friends, I was never home and then I used to come in for dinner and I only used to come home for tea and then I used to go back out again.
PORTER
So what were you doing - you were out playing were you?
AMY
Yeah, going up the park, on the swing, walking round, running, normal stuff.
PORTER
Are the swings where you had your accident, you fell off did you? Tell me what happened.
AMY
Yeah. I was on the swing one day and they were going really fast and I wanted them to stop so I thought that I'd sit on the edge of the swing so I could slow myself down with my feet and as it came up my bum bumped off the swing went backwards and I fell down.
PORTER
And landed on your head.
AMY
Yep.
PORTER
So what happened - I mean when did you start to feel a bit funny was it straightaway afterwards?
AMY
A couple of weeks afterwards I started feeling really tired, started getting quite dizzy. I had aches and pains in my legs and I got headaches, stomach ache.
PORTER
Thirteen-year-old Amy who has been so badly affected by chronic fatigue syndrome that she rarely leaves the house - and when she does it's in a wheelchair. We'll be hearing more from her later.
Chronic fatigue syndrome - otherwise known as ME - is thought to affect at least a quarter of a million people across the UK, many of whom are children.
To find out more about the condition, and its management in today's NHS, I travelled to The Royal National Hospital for Rheumatic Diseases in Bath to spend a day with Dr Esther Crawley - the only paediatrician in the country who specialises in CFS/ME.
CRAWLEY
Yeah there's lots of names for chronic fatigue syndrome and the patient group usually call it ME or myalgic encephalitis or myalgic encephalopathy and that is because that actually described their symptoms, so muscle aches and pains and cognitive or thinking problems. In fact doctors don't like that because when you actually look there's no evidence of muscle inflammation. And so doctors decided to call it chronic, which means long term, fatigue and syndrome, which means a collection of symptoms. Patients didn't like that, so we're now ended up with CFS/ME is the actual official terminology.
PORTER
At what age does it tend to strike?
CRAWLEY
The most recent study in America shows that it probably affects about 2% of the adult population. Studies in children suggests that it affects between 1 and 2% of children. That's using a definition of chronic fatigue syndrome as disabling fatigue, so fatigue that actually stops you doing stuff. In children it probably increases in frequency in puberty but we certainly see a considerable number of children under the age of 12 and in fact our youngest child that we've seen was actually about three and we've had several children under the age of five. So this is an illness that affects everybody and is surprisingly common.
PORTER
Is there a sex bias, is it more likely to happen to boys or girls?
CRAWLEY
Well it depends on whether you're seeing them in a specialist clinic or not. If you actually look in the population in children under 12 it's equally common in boys and girls and - in children and in adults it's a bit more common in girls than boys. But in specialist clinics you're much more likely to be seen if you're actually female. And the same is true for ethnic groups as well, so in a specialist clinic you're much more likely to be seen if you're white. But in the population the most common ethnic group is actually Bangladeshis. In specialist clinics you're most likely to be seen if you're social class one and two, so if you're relatively wealthy, in the population it's actually most common in social class five, it's common in poor socially deprived groups.
PORTER
And what do we think causes chronic fatigue syndrome, is this a response to a number of different insults or could there be one - one single cause?
CRAWLEY
Well there's quite a lot of evidence that chronic fatigue syndrome, as in a lot of chronic diseases, is genetically heritable. A lot of twin studies to show, for example, if you're an identical twin and one of you gets chronic fatigue syndrome the chance that the other will get it is up to 80%. If you're a non-identical twin it's about 30 or 40%. And those studies have been repeated and the evidence is strong. And it seems as if you're therefore genetically vulnerable to getting it but you still need your trigger and the trigger often is the glandular fever virus - EBV - in fact most "glandular fever" is actually chronic fatigue syndrome. If you get the EBV virus most people are only sick for a couple of weeks, if you're sick for three or four months nowadays we'd call it chronic fatigue syndrome. But other infections trigger it as well. So we see quite a lot of children with chest infections that trigger chronic fatigue syndrome, head injury's another interesting one - if you look at people disabled after a head injury they're usually disabled by fatigue and even minor head injury can cause that. In fact one of the patient's I've seen today has had that as a cause. But also other things - so cancer patients, for example, often end up with very, very severe fatigue afterwards. So you have the genetic vulnerability and then you get your stimulus and then whether you get better or not depends on a lot of other things going on.
PORTER
By the time they get to see you what are the classic symptoms?
CRAWLEY
The most common symptom after fatigue is memory and concentration problems. Headaches is up there as a very common symptom. A lot of children have a lot of nausea - they feel sick a lot of the time - and abdominal pain - tummy ache - in fact abdominal pain is more common in younger children, as a GP you've probably seen lots of children with recurrent abdominal pain. Another classical symptom is sore throats and tender lymph nodes and these children often present to the GPs and to paediatricians with recurrent tonsillitis every Thursday and Friday at the end of the week.
PORTER
And that delayed response is a common factor - symptoms in people with CFS/ME are typically worse a day of two after physical, emotional or cognitive exertion. On good days they naturally do more than usual, but then end up dealing with the payback later. And in the case of school children that's often towards the end of the school week.
First up in today's clinic is James, who has been under Esther's care for a while.
JAMES'S MOTHER
Towards the end of the first year of secondary school he started to have time off with tonsillitis and in the second - beginning of the autumn term of the second year - tonsillitis recurring all the time, it was just not responding to antibiotics. And this was not recovering ...
PORTER
And you say in terms of not responding what were you actually noticing as a mother, I mean was he - he was poorly all the time, was he in bed or ...?
JAMES'S MOTHER
Lying down all the time, very pale, constant tonsils, head, unable to even get dressed. So in the end I think I went four times in two weeks to the GP saying nothing's happening here.
PORTER
And the response was?
JAMES'S MOTHER
This GP took it very seriously, straightaway did glandular fever tests, lots of blood tests I think and straightaway referred to paediatrics at the hospital.
PORTER
Where the diagnosis of chronic fatigue syndrome was raised, was that a surprise to you?
JAMES'S MOTHER
I thought there was something more than just tonsillitis going on but I had no idea that children had chronic fatigue, I hadn't even heard of chronic fatigue as a title.
PORTER
So that was two years ago, since then how's James been?
JAMES'S MOTHER
Made a very good recovery within six months. He was back at school four out of five hours but since he's had an operation so that's sort of knocked it for six really.
PORTER
So he's had an operation on his back, quite a big operation, and since then some of the trouble's come back?
JAMES'S MOTHER
Yes. Occasionally he talks about tonsils and head but mainly just the tiredness now.
PORTER
Can you tell just by looking at him how he is?
JAMES'S MOTHER
Yeah I can tell before James can from the colour of his face, yeah, it begins to sort of just lose his colour and I know he needs to rest but at that point is when he decides he doesn't need to rest.
PORTER
James you're not at the school at the moment so how are you keeping up with your school work because you're 14 now aren't you - it's quite an important time for you?
JAMES
I've just started my GCSE year and tutors have just started coming round. I'm having maths and English tutoring. And my dad, who used to be a science teacher, is now teaching me my science.
PORTER
One of the major contributors to the fatigue central to CFS is thought to be poor quality sleep. But the solution isn't as obvious as you might think - indeed it's the exact opposite.
CRAWLEY
They don't have the necessary signals to get up in the morning, they also don't appear to have the necessary signals to go to bed at night - they don't have, what I call, the sleepy hormones. So that means that they're not getting the right cues about how much sleep they need and because they feel tired they sleep for longer. And what we know in all illnesses if you extend the amount of time you sleep then your sleep quality deteriorates. There's only a portion of sleep that actually makes you feel better and that gets less, so you sleep for longer and that gets less, so you sleep for longer and that gets less and so you feel worse and worse and worse.
PORTER
Which is counterintuitive, I mean most people would think the longer you spend in bed the more rest you have the quicker you get better.
CRAWLEY
I know and if a parent managed to work out that they're tired child needed less sleep I'd probably be out of a job but yeah, so that one of the first things we do we actually sleep restrict and that's really, really hard ...
PORTER
And practically that would mean - I mean what sort of level are we talking about?
CRAWLEY
So you sleep restrict - so a total amount of sleep that's the same as their peers would be getting. So for a 16 year old child it would be about eight hours sleep a night, a 12 year old child about nine hours sleep. So that means that for most teenagers we're suggesting that they don't go to bed till about midnight and they get up at eight and they don't sleep during the day. Now to begin with they feel absolutely awful but after two weeks their restorative sleep increases massively and they start to feel better. And the next thing we do is we work on activity. There are three types of activity - there's physical activity, cognitive or thinking activity and emotional activity.
PORTER
So what you're saying is that activity in general is not just the obvious - which is physical - but it's - if you're arguing, if you're upset and if you're doing challenging work - you're doing maths homework or ...
CRAWLEY
Maths or computer or computer games - those are all engaging things. And we know that anything that uses the brain is a. very tiring and b. uses up lots of energy.
PORTER
Do you limit those activities?
CRAWLEY
Well what we do is you look at how a child is living their life and what you'll find and what you see in the children we're seeing today is that they have days when they do loads and days when they do nothing. And the issue is on the days when they do loads they're actually feeling okay and then the next day they feel absolutely dreadful. And so what you're trying to do is not limit activity but spread it out, so it's the same every single day. So in a seven day period they will get the same amount of stuff done but they will do the same everyday. And what that feels like for the child is that on a good day they want to go and do their six hours of stuff and they're only allowed to do three and they're twiddling their fingers and feeling bored and on a bad day they may not feel like doing three hours work but they still do it. And we use a chart system to find the level and when they've found a level then we use a red card system, this was actually invented by one of my patients and I'm particularly proud of it. And what I have in front of me are some red cards, numbered with the number of minutes on them, we use red for high activity and when a child has worked out how much they're meant to do in a day, say it's meant to be three hours, they give themselves three hours worth of red cards which they can use during the day.
PORTER
So 18 10 minute cards.
CRAWLEY
That's right. And so if they - is that right, I haven't checked the maths - so if they go on the computer, for example, for 20 minutes, they use a 20 minute card and then if they go and watch 20 minutes of exciting television they use another 20 minutes or 20 minutes of homework they use the same.
PORTER
And when they run out they have to stop.
CRAWLEY
They have to stop. And they then have to do activity that's not - that's restful or boring and doesn't stimulate them.
PORTER
And what colour is that?
CRAWLEY
Well that's a yellow colour and we don't have yellow cards because that's everything else. And then we also encourage children to do what we call deep rest and there's very good evidence that if you can do that then actually that reduces a lot of the biology that's going on that makes you feel unwell.
PORTER
That's the so-called flop time is it?
CRAWLEY
Yeah we call it flop time or chilling out or something. And quite a lot of teenagers use meditative techniques for that - Tai Chi, Yoga - those sort of things or something called guided imagery. And teenagers are really fabulous actually in using that to enable them to get through a whole day at school or college.
PORTER
And in the card system - so that's your green.
CRAWLEY
That's your green card.
PORTER
And they have to spend that.
CRAWLEY
And then they have to try and introduce a five minute rest every hour for top gold stars.
ACTUALITY
CRAWLEY
How's your sleep at the moment?
JAMES
Well after the operation it was okay and during half term it kind of got mucked up a bit.
CRAWLEY
[Indistinct words] and so there are four colours - blue is sleep, green is rest, yellow is low energy and red is high energy - and the aim - what we're trying to do is to avoid a boom bust cycle and it's pretty good, there's a little bit of variation here, I am quite strict with it as you can imagine. And then what you're really looking for is an absolute equal number of red squares each day and you can see where we did it and we had the same colours [Indistinct words] so I can look it very quickly. So I just tend to add up very quickly - four, five, six, seven, so, one, two, three, four, five, six, seven - so it's about seven hours of red every day and red is physical cognitive or emotional activity, so physical walking, sitting up - in your case riding a bicycle and stuff. For the severely affected children physical would be sitting up, having a meal, brushing your hair and so on. Cognitive would be schoolwork, television, computer and so on. And emotional worries or arguments. And we get them to record emotional stuff here so that if they have a flare - the arguments with the sibling - and it is very important and the point is that if you're having lots of arguments and you don't record it then you end up changing your physical activity because you think it's a physical activity that's set it up. So we get them to record all this. And then yellow is low energy and that's things like television you're not engaged in, so for me that would be watching Top Gear or something like that, that I'm not particularly into or reading Hello magazines rather than a book.
PORTER
Olly's been recovering well from a prolonged episode of chronic fatigue following Esther's advice to restrict his sleep, pace his activity and take regular rest. But he has come to see her today following a recent relapse - or flare up.
ACTUALITY
OLLY
It started in September on my college course.
CRAWLEY
Course in what?
OLLY
Computer games design a Trowbridge.
CRAWLEY
This has been the issue with Olly all alone because Olly is fantastic at computer games and computers and we have had lots of arguments, would you say that's fair?
OLLY
A couple, a couple.
CRAWLEY
About computer usage compared to other things that boys of 15 have to do like schoolwork. So you started your college.
OLLY
Yeah started off really well, did three days. And then I got payback obviously and then it's just kind of gone downhill from there.
CRAWLEY
So before you started college how much were you doing?
OLLY
I was doing quite a lot of exercise but I wasn't doing a lot of academic work because I'd done everything that I needed to do for school and just lying around in the garden enjoying the weather.
PORTER
Flare ups can be triggered by physical, emotional or cognitive stressors, and other insults like viral infections - typically coughs and colds at this time of year. Olly's setback was almost certainly prompted by the strain of going back to college, but many of Dr Esther Crawley's patients are too ill to even get that far.
CRAWLEY
About 10% of children and adults are so severely affected that they cannot leave the house. And in fact what we think in this country is that most of those have properly disengaged a medical professional. So I do go round the country and see children that have been in bed for seven or eight years and don't have a doctor looking after them which I think is still astonishing. On the other hand there is a really interesting illness among athletes called overuse under performance syndrome which sounds exactly like chronic fatigue syndrome. So they get a virus, they reduce their exercise, they try and catch up on their exercise programme, get sick again and the cycle continues. And in the Bath area we have a lot of young teenagers who are training for the Olympics, for example, and they come our way as well. So they're very high level functioning and people don't think they're disabled because they're managing full time school but they still can't do what they really want to do.
PORTER
This has been a very controversial area, both amongst - the way the media's portrayed it, the fact that a lot of doctors have not taken it as seriously as they should have. We've just had a new set of guidance issued by NICE, what difference has that made to you as someone with a special interest in this condition?
CRAWLEY
Well the NICE guidelines is incredibly important. We know - and I think what you're referring to - is about 50% of GPs feel able to make a diagnosis and in fact there was another paper fairly recently that showed 50% of GPs didn't believe in it. So I think the NICE guidelines says very clearly this is a real illness, it causes a huge amount of suffering and by the way a huge amount of loss of earnings and you must take it seriously. As a paediatrician the NICE guidance says three things that are very important. First of all it says that when you see a child who is fatigued, disabled by fatigue, you need to look for lots of reasons for it, you need to exclude leukaemia and things like that and you need to do it quickly. If they're not making any improvement by six weeks you must refer them to a paediatrician, that's new, a lot of GPs don't necessarily refer children to paediatricians. If the child is not making progress, even if they're mildly affected, they need to be referred to a specialist service within six months. If they're severely affected, i.e. unable to leave the house, they need to be a referred to a specialist service immediately. And if they're moderately affected they need to be referred to a specialist service within three months. And that has got huge implications, mainly because there's only about 10% of the country has a specialist service for chronic fatigue syndrome. And this is great for chronic fatigue nationally because it enables people like me to go to commissioners and ask for them to commission specialist services in parts of the country where children currently have no access to help.
PORTER
And in this guidance have NICE come up with an overview of how we should be tackling children with CFS or indeed adults with the condition?
CRAWLEY
Yeah I mean I think there's two forms of treatment that have good research evidence that they work and obviously no treatment works in everybody. The two forms of treatment that have been shown to work are cognitive behavioural therapy and graded exercise. Now what NICE says and what we do in this service is we provide individualised rehabilitation programmes for children that use a sort of pick and mix system that works for the child. And the two areas that we concentrate on mostly is sleep and activity management.
PORTER
Our reporter Anna Lacey met up with Alex Woolnough and his father Mike at Gt Ormond Street Hospital in London.
MIKE WOOLNOUGH
He was getting very low, very depressed, about it not least because the attitude of his peers was to call it chronic laziness syndrome. And unfortunately this was an attitude also of some members of staff, one of whom was want to refer to him as the boy who never was. And this all helped to create a very negative attitude and he'd lost most of his friends just because he wasn't able to maintain the links with them.
ALEX WOOLNOUGH
I was getting tired a lot and I kept catching lots of - any bug that was going around, so I ended up being quite ill and sometimes I was sick and sometimes I wouldn't be able to get out of bed. About one year ago I came to Great Ormond Street and they got me into a routine where I'd be getting up about 9.30 at the latest in the morning and going to bed about 10.
LACEY
The type of routine Alex mentions is also known as graded activity. And one of the people involved with the programme is Anna Gregorowski - a specialist in adolescent medicine.
GREGOROWSKI
So if a young person, for example, wants to get back into going shopping with their friends they would break that down into the component parts - the walking, the being out for a certain number of hours - and very much starting with the amount of activity that the young person is currently doing, work out a programme of very gradually increasing the - let's say walking and the being able to tolerate physical activity.
ACTUALITY
GREGOROWSKI
Okay you've just seen the physiotherapist, Monica, and I wonder what goals we set with her today.
ALEX WOOLNOUGH
Put the walking from 25 minutes to about 45 minutes now.
GREGOROWSKI
Was there anything around time spent at college?
ALEX WOOLNOUGH
I think about 70, maybe up to 80% of the time. We might consider moving up a bit and seeing how it goes from there.
LACEY
Like many young people with ME, going to school five days a week is a real struggle and pushing themselves to do as much as their friends can make the symptoms worse. In Alex's case, the graded activity approach has helped him to gradually increase his time in college to four days a week.
ALEX WOOLNOUGH
Well a year ago I would probably only be getting in about 20% of the time at school, so I ended up having to spend a lot of time at home catching up with work. So as a result I'd be making myself more tired and being able to get in less and that's in a vicious spiral.
LACEY
And can you give me an idea of some of the targets you're working towards at the moment?
ALEX WOOLNOUGH
I'm currently working towards about getting in for 70-80% a day.
LACEY
But chronic fatigue syndrome isn't just about lacking physical stamina. Missing out on school can mean losing friends and getting behind on work, which can all lead to feelings of anxiety and depression. To help deal with these problems and regain confidence, the programme includes one to one psychology sessions. Here's clinical psychologist Anna Hutchinson.
HUTCHINSON
We tend to work on what the young person brings and what the young person feels they need to explore in order to help them get better. So some examples would be how can I improve my mood even though things are still tough. Social confidence - how do I re-engage with my peers when I haven't been able to for two years. Young people might predict having been away from their peers that they'll be different from their peers so we explore those thoughts and we encourage young people to take a risk sometimes and experiment with having a go at getting involved socially and things like that.
LACEY
With psychology sessions, graded activity and going back to school, there's quite a lot to think about. So I asked Alex what keeps him going.
ALEX WOOLNOUGH
Well it's just the general prospect of being able to get better so I can do more things and socialise and go into town with my friends and generally get into college more so I can learn and get decent grades.
MIKE WOOLNOUGH
It's changed from me being - having to take him into school everyday, bring him home from school everyday, he's now able to make his own way into school on the bus, he's able to go in and socialise much more. It's like getting our son back.
PORTER
Mike Woolnough talking to our reporter Anna Lacey. Mike's son Alex may have found it helpful but not everyone supports the use of graded exercise, or psychological interventions like cognitive behavioural therapy. Some claim the former actually makes many people worse, and that the latter just reinforces a widely held misconception that CFS/ME is primarily psychological in origin. Back in Bath, Dr Esther Crawley disagrees.
CRAWLEY
Graded exercise has had a bad press and one of the reasons it's had a bad press is when the studies were written about how it worked a lot of people did it very badly. So a lot of patients were told just to go to the gym and just to go and get more exercise and that actually isn't what graded exercise is about. It's much more complicated than that. And if delivered by specially trained professionals it can be very effective. And there are a lot of studies to show that. I mean my feeling is and the feeling of NICE is that actually there are lots of different forms of treatment and what you need to do is with the patient - and NICE says this over and over again - is work out very carefully what it is they want to do. So, for example, with the athletes that walk through my door if their primary goal is to get fit then a graded exercise programme is probably very appropriate for them. But for a lot of children and adults it may not be the ideal treatment.
PORTER
And a lot of people feel that doctors think of CFS principally as a psychological problem.
CRAWLEY
And that's also a shame because there's actually - there's very strong evidence to show that this is a genuine biological illness.
PORTER
That doesn't mean that CBT won't help does it?
CRAWLEY
No, no of course, CBT's used for heart failure, it's used for cancer patients, it improves fitness, it improves outcomes, it improves survival. When children and families come and see us we talk about all the various options and we make a plan together and I've not had a single child or family say that they didn't want CBT, it's a mutual decision and they benefit a lot from it. Having said that we only - I think when I looked at the figures - we only offer CBT to about 30% of children that are seen here, the rest don't need it.
We're going to go and see Amy now. She's a 13-year-old girl with chronic fatigue syndrome who I started seeing at the beginning of this year. Her chronic fatigue syndrome started after a fall off a swing when she banged her head.
PORTER
So that was a head injury, she injured her head?
CRAWLEY
She didn't injure it badly, she just had a fell off a swing and banged her head and didn't think very much of it and then became increasingly very rapidly disabled by fatigue. And we know that big head injuries cause high levels of fatigue and I think it's becoming increasingly recognised that minor head injuries also cause fatigue.
PORTER
And the reason why we're going to see her at home, a domiciliary visit, is because she's too poorly to leave the home.
CRAWLEY
Yeah, so about 10% of children and 10% of adults actually with chronic fatigue syndrome are too sick to leave the house. And when I first saw Amy she was actually too sick to leave the bed. And so if you actually want to get them better you have to go and see them at home and devise a programme for them that's manageable at home. And actually going to the home often gives you quite a lot of clues into how you can actually adapt the programme for them.
ACTUALITY
Hello come on in, nice to see you.
CRAWLEY
How are you doing? I think the last time I saw you was about what six weeks ago, something like that? Your mum said on the phone that you were doing really well.
AMY
Yes.
CRAWLEY
So how are things?
AMY
They're going okay thank you.
MUM
Bit stuck on a bit of a plateau at the moment. Too scared to go forward to make that step aren't we.
AMY
Yeah.
CRAWLEY
I think that's really common actually and that's not necessarily a bad thing. So what are you up to activity wise at the moment?
MUM
Well we've increased it now, she's up to 25 minutes twice a day on the computer. We're going out for 15 minutes a day at the moment in the wheelchair but she is trying to build up her strength and walk about five minutes a day. She's having her hour's tuition everyday but towards the end of the week she's crashing.
AMY
And it's always the next day is a good lesson, that we're going to be doing fun stuff.
CRAWLEY
If you're not able to do it on a bad day then we need to cut everything back and then start increasing it again. If you're doing 15 minutes walk four days a week then it would be the same as doing 10 minutes everyday, wouldn't it, it would be the same amount of exercise. It's not going back, it's just spreading it out. And it's not that you've done things wrong. Okay? That's why we come and see you regularly because it's really hard. You feel happier?
AMY
A little bit.
MUM
She just wants to go out with her friends, she wants to go to discos. She's just, you know - apart from her little trips out in the wheelchair that's it, she's housebound.
CRAWLEY
I don't mind if one day at the weekend you go into town for an hour or something.
AMY
Yeah that sounds really good.
CRAWLEY
You'd have to make sure you didn't do the computer that day and you'd just have to watch really lousy television for the rest of the day and stuff like that. When you go into town go into town and then find somewhere to have a real flop for five minutes and make sure the whole thing, from here - door to door is an hour.
MUM
We could do some Christmas shopping.
AMY
Yeah that would be great. Get me in the Christmas mood.
ENDS
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