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BRITISH BROADCASTING CORPORATION
RADIO SCIENCE UNIT
CHECK UP
Programme 2. - Fatigue
RADIO 4
THURSDAY 30/11/06 1500-1530
PRESENTER:
BARBARA MYERS
CONTRIBUTORS:
LESLIE FINDLEY
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PRODUCER:
ERIKA WRIGHT
NOT CHECKED AS BROADCAST
MYERS
Hello, how are you? Tired out. Well that's not surprising if you've had a succession of broken nights or are recovering from a bout of flu but what if you're exhausted all the time - zero energy, overwhelming fatigue, both physically and mentally which doesn't lift even for a moment? Well feeling tired all the time can have underlying medical causes - anaemia, diabetes, thyroid problems and depression - to name just a few. Once they've been ruled out you may be left with a diagnosis of chronic fatigue syndrome. It's a diagnosis not to be given lightly since recovery can be slow and uncertain, there's no pill for this ill as our expert today can sadly testify - he's well placed to know since he runs one of the country's few specialist centres for severe chronic fatigue syndrome or ME as it's also known.
So call us now with your questions about unexplained tiredness for Professor Leslie Findley. The number is 08700 100 444 or you can e-mail of course, that's checkup@bbc.co.uk. We've got our first caller lined and waiting - Sandra, who's concerned about her 13 year old daughter, what are the problems that you're having Sandra?
SANDRA
Hello, yes. My daughter is 13 and it's 20 days ago now, she came home from school feeling tired, she'd had a strenuous swimming lesson, said she had a sore throat. I sort of put this down to the chlorine in the water but she immediately took to her bed. She went downhill. Well basically she's been in bed more or less ever since feeling generally poorly and tired.
MYERS
And has seen the doctor?
SANDRA
Yes, I took her to the doctor five days after she came home and his comment was: She has no symptoms I can't create an illness but she's most probably got a virus. And to take her back the following week. Well she was just the same - in bed, sleeping 15 hours at a time. So I took her again and she's had blood tests and the doctor suspected glandular fever but she also requested other tests and thyroid, anaemia, blood sugar - these all came back negative at the start of this week.
MYERS
Alright, well let me put you over to the expert. Is this something that if you saw Sandra's daughter you'd be very worried that she might have chronic fatigue syndrome?
FINDLEY
No it's not possible to diagnose chronic fatigue syndrome and it would be inappropriate after such short a time. Chronic fatigue syndrome needs to exist, for us to make a diagnosis, for months, usually six months is given as the time span. I mean what this young lady has is not unusual, that is a period of debility which there is no obvious cause and providing she's been properly assessed by a competent physician and had the necessary blood tests then I think one would expect a slow but definite recovery. I mean we normally say these are viral infections and we can only test for a few viruses and there are a myriad of viruses which can produce this.
MYERS
So this might be a case of really expecting her to be a lot better, a lot quicker, if she has had a viral infection, which you may or may not be able to find as a result of the tests that the GP would have done?
FINDLEY
Well I'm not sure what tests he has done but I guess there are only a limited number that can be done in any one time and provided serious other causes have been ruled out then I think one can - tender loving care and she will improve.
MYERS
You've heard it from the expert Sandra, I hope that's helpful.
SANDRA
Tender loving care - she's getting plenty of that and she's enjoying it.
MYERS
Well keep on giving it, it seems like the answer.
SANDRA
Well that's fantastic. Thank you.
MYERS
Okay well thanks for setting us off with that call. We'll go to a second caller now and wanting to talk to us is Graham Ross. Graham, you're wondering what we're talking about here when we're talking about fatigue or exhaustion, what's your question in particular?
ROSS
My question relates to does the mind play tricks in as far as it puts up the possibility of a fatigue as a reason for not doing something, maybe something unpleasant.
MYERS
Ah now this is sort of touching on the idea that was quite popular at one time when you're talking about being extremely tired, it's really a sort of an excuse for not getting on with perhaps difficult things in life. Hasn't that really been pretty much discounted when we talk about chronic fatigue Leslie?
FINDLEY
I think as a drive to pathology I think it has but the caller is quite correct, I mean if you take soldiers and give them a task which is pretty grim and pretty nasty and pretty unpleasant and measure their perception of fatigue it will be very much greater than if you give them a task of say swimming in Saint Tropez. Clearly the mind does, as a protective mechanism, save the organism, if you like. So yes it is correct but is it a major factor in day-to-day illness, I think it's a small factor.
MYERS
So you would look for some more objective tests if you were really trying to get to the bottom of what we mean by a diagnosis of chronic fatigue syndrome?
FINDLEY
Well if somebody has fatigue syndrome then there is evidence - there's got to be substantial - there is evidence that they cannot function in many domains and it's usually cognitive as well as physical. I don't think laziness is a common deferential diagnosis, I mean a lazy person will be picked up by a competent physician or should be able to pick up a lazy person.
MYERS
Laziness is something you can choose to exercise but chronic fatigue syndrome you would neither choose to nor want to.
FINDLEY
Well there are other markers of chronic fatigue syndrome and there are associated symptoms which cannot be mimicked.
MYERS
Graham thanks for that call, and that very interesting answer from Leslie. Let's go to our next - well we'll go to an e-mail now because Marigold sends us this message. She's 23, has suffered from tiredness and lethargy since she was a teenager. She says she always tries to get a good night's sleep, she takes regular exercise and eats healthily - so she's doing all the right sort of things. But she says that nothing seems to help when she's feeling drained of energy. So anything else she can do to boost her energy levels when she feels like this?
FINDLEY
I think it really depends how frequent these periods of loss of energy are, how severe they are because there are many reasons for periods of loss of energy, for instance in some females it relates closely to the cycle and there may be a hormonal component. In others it may relate to mood or anxiety or stress. I think one has to take a very careful history and until one actually gets the factors behind that individual's fatigue it's very difficult to be prescriptive in terms of therapies.
MYERS
And indeed it sounds as though it comes and goes somewhat, would that be at all typical of chronic fatigue or is that something that's pretty unrelenting when it hits?
FINDLEY
Well it is unrelenting but there is a relapsing and remitting type but the relapses are usually very intrusive, this is not I feel - it's not a perception, it is a period of intrusive dysfunction.
MYERS
Let's go to another caller who doesn't want to give his or her name but is calling from Gerrards Cross. Hello and what's your question please?
ANON
Hello. Well I think my case sounds very similar to the lady who e-mailed you. I've been tested for thyroid, diabetes, anaemia and all the usual things and take lots of exercise, eat a pretty - pretty good diet but I've just got no energy and I'm going to bed around 8 o'clock, 9 o'clock, have a tremendously good night's sleep but wake up exhausted. And I - I'm taking zinc at the moment because somebody said that might help but it's just this permanent feeling of being absolutely shattered.
MYERS
Well again let's hand you over to Leslie Findley.
FINDLEY
I wasn't quite clear how long this had been going on for.
ANON
It's been going on for quite a while and I must confess that it is worse at this time of the year.
FINDLEY
Well you've done the right things, you've obviously seen a physician, you've excluded very readily treatable conditions. There is not doubt that there are individuals who are sensitive to seasonal changes. Chronic fatigue syndrome itself is invariably worse in the winter months, almost without exception, and there are patients who only get symptoms in the winter months. So if everything else has been excluded and there's nothing unusual in your lifestyle it may be worth trying the effects of a light box, which is - can be purchased quite cheaply from most outlets and it may make a difference.
MYERS
Can I just quote Katherine who's e-mailed us to say that this seasonal affective disorder in the winter has dogged her with exactly the sort of symptoms of course that we're talking about - tiredness in the afternoon, for example, waking with a foggy head, depression. She has just splashed out on a light box and says within a week her symptoms have been improved - she's sleeping better, thinking more clearly and she says I don't care if it's psychosomatic, it works. So the proofs in the pudding. But I'm wondering whether you think that we're in the right area here, with you, our caller from Gerrards Cross, do you think that might explain it?
ANON
Well it might be and I'm willing to give anything a go, so I might zoom out and buy one.
FINDLEY
I wish you luck.
MYERS
At least stay - stay and watch - listen to the rest of the programme before you rush away but let's go to another caller and we've got Chris on the line from Bristol who wants to talk to us about stress and fatigue. What's your exact question Chris?
CHRIS
Well it's not so much a question. I was diagnosed about 12 years ago with chronic fatigue and I could hardly get up the stairs but now 12 years on I'm actually back at work part time. But just to say I found that I dumped a lot of the stresses in my life and I just encourage people to dump the rubbish, the stuff they don't need. And when I came back, we'd been working abroad, and I became ill, I went to see an anxiety management counsellor and I never thought I'd end up chatting to somebody like that. And it's been a fantastic coping mechanism. So I would encourage people to just look for the things that are causing the biggest drag on their lives and making them tired.
MYERS
Well that does sound a very good commendation then for getting rid of stress insofar as you can but I always think of stress as being sort of pressure that you can't actually control, so it's slightly easier said than done, so well done that you've managed it Chris. But take it on if you will Leslie.
FINDLEY
Well I think Chris should be sitting here because what he says is absolutely bang on. That stress in individuals can be the major perpetuator of fatigue states. I always say stress to fatigue is like petrol to flames. And any management programme has got to examine the stress factors in that individual's life. Of course recovery has got to be in an environment which is realistic and pragmatic and the person has eventually got to go back to work and take on responsibilities. So what we need to do is have programmes which reduce the stress levels but allow the person to manage them sensibly and this is very, very important, in fact I'd go as far as to say in fatigue syndrome if the person remains under uncontrollable stress they will not recover.
MYERS
But would you go as far as to say that stress is the cause then and therefore we're all going to be feeling a little bit guilty if we suffer from this really very difficult condition and we feel we've brought it on ourselves?
FINDLEY
I don't think - I don't consider it self inflicted. I think most patients with fatigue syndrome the cause is multiple. One of those factors is for many people stress, they go through a particularly stressful period - job change, bereavement, family stresses, they may have put stress on themselves by being over ambitious. These sort of factors have to be taken into account. And I know it's a glib word to say we've got to get rid of stress but certainly it's got to be changed for that individual.
MYERS
So Chris would you say you're now cured of your chronic fatigue?
CHRIS
No I mean unfortunately - I'm back at work doing 21 hours a week working in a psychiatric patient environment but I rest every lunchtime, I have a deckchair and I have a sleep.
MYERS
And you don't feel at all guilty about that?
CHRIS
Well it's in my lunchtime and I put my feet up, I put a note on the door, no one bothers me and I rest and it's like a power nap, as some people like to call it. But I can get up and go on and I've just had a nap this afternoon and as I speak to you now I'm about to paint my lounge.
MYERS
Well thank you very much that will be encouraging to people. If I can ask ...
CHRIS
I'd just say it's managing, it's about managing what you've got and don't try to run too fast with the whole thing.
MYERS
Yes absolutely. Leslie, would you say that most people can expect to make a recovery from a diagnosis of chronic fatigue syndrome, what are the sort of numbers we're talking about?
FINDLEY
We normally - a consensus view would say that the average duration of the illness is between three and five years with about 40% of that group not going back to previous levels of functioning, it doesn't mean to say they don't improve and get back into the real world but they don't go back to their previous levels of performance. And possibly many of them don't want to, they've found it better that they don't try and go back to the way they were.
MYERS
You're listening to Check Up with me Barbara Myers and Professor Leslie Findley. It's just after quarter past three and we're taking your questions on unexplained tiredness.
Now Leslie I know that at your centre you deal with severe chronic fatigue syndrome, we've had an e-mail from Steph and I guess she would very definitely fit into this severe category, she says that she's been ill for very many years. But it wasn't until she was pushed into what she calls here a graded exercise programme that she relapsed very badly, became housebound, unable to walk, she says she's now completely housebound, bed bound indeed, in a pitch black room, needing tube feeding. That's a very bleak picture indeed. How many people are facing that progress, as it were, in their disease?
FINDLEY
Well fortunately only a very small percentage of the total. And probably this particular person assumes that it's all down to graded exercise and the misuse thereof but there may be many factors which has caused this particular person to deteriorate. But if I can talk about, very briefly, about graded exercise. There is evidence in mild to moderate chronic fatigue syndrome graded exercise properly applied and properly supervised can be of help. But the evidence for it in severe and very severe is not - we don't have it and there is no doubt that some patients, particularly if they're not supervised, can be made worse by this. So I think this particular case, obviously I can't talk about it in depth because I don't know the case, but it illustrates the fears that we have that in severe and very severe fatigue syndrome graded exercise should only be considered under very careful supervision, preferably by a multidisciplinary fatigue team and the person's responses to that exercise carefully monitored.
MYERS
Well Steph, who wrote the e-mail, and thank you for sending that in, because I know it's hard work to even get to a PC and send an e-mail under the circumstances, but she did want to offer the advice, which is: To those who feel very tired and who aren't depressed, she says that needs treatment in its own right, but to those who are very tired and are newly diagnosed do not push yourself. Would you agree that that's good counsel?
FINDLEY
Well if that person - if an individual hasn't got any other advice at all that's safe advice and I go again and say if the person's got intrusive fatigue they need to see an expert, preferably a team. And there are now teams around the country in the community, I mean these are embryo teams and there's not enough of them but they are available and I think it's best to get good advice.
MYERS
Is this a sign with these community teams that the condition is being taken ever more seriously?
FINDLEY
Yes I think it is being taken more seriously but I think that the health service and health providers are in a situation where they have to do something because you know it's almost in epidemic proportions.
MYERS
How many people are we talking about with a diagnosis?
FINDLEY
We're talking about a minimum of a quarter of a million people at any one time with chronic fatigue syndrome, a minimum.
MYERS
Let's go to another caller, Lesley Lewis in East Sussex who has a daughter who sadly fits into those statistics. She has a diagnosis then of chronic fatigue?
LEWIS
Yes, she was diagnosed about three weeks ago after being quite unwell for about three years. Hello?
MYERS
Indeed we're hearing you, very distressing I expect to hear that. So how are you reacting to the news, how is she coping?
LEWIS
She's coping very well actually and I think she feels quite relieved to have a diagnosis now and not to feel that she's being ill and people aren't believing her. What my main concern is at the moment, as a near teenager, I still want her to have some kind of teenage life but be able to support her at the same time because she can still be - have fun.
MYERS
Absolutely. So Leslie it seems very young to have this condition, can it strike at any age?
FINDLEY
Oh yes, I mean I think it's less of an uncommon age for adolescent fatigue syndrome to start. I think that what the mother wants is - one should applaud, I mean it's what any parent would want. A few things I think the mother needs to take advice from the person who's given the diagnosis and the team that are involved with the care and ask how she can support and they will give her precise advice for that individual. But in essence to support what the therapeutic team have recommended, to make sure that the person sticks to that programme, to put education second, education has to come second, health comes first and if this is more than mild fatigue syndrome that person will be having difficulties maintaining school averages, keeping up with the others and so on. So it has to go on to the backburner, it may mean that she requires some home tuition and support. It may not be possible for them to keep all their teenage activities going because priorities have to be made because there is a limit on energy and it has to be used very sensibly and so really a lot of advice has to go into that individual's management.
MYERS
Do you feel you're being well supported, have you got a community team who are helping you?
LEWIS
It's been a very new diagnosis and once I received the diagnosis from the hospital initially I've had some very good support and some very good information and obviously early days yet and we're waiting for another appointment next week. So it's taking it from there really.
MYERS
And at least you knew enough to make sure she got a diagnosis.
LEWIS
Yeah it was a very on the ball GP.
MYERS
That's extremely good news, so he referred you to a specialist.
LEWIS
Yes.
MYERS
Okay, well thank you very much for your call and we wish you well. We've got another caller who was also interested about when you can get CFS and we were talking there about Leslie whose daughter sadly at the age of 12 has got a diagnosis, I think you're at the other end of the age scale are you Dorothy?
DOROTHY
Yes I'm 76 now and I've had this overwhelming sleepiness for I don't know how many years now. Certainly from when I was 70 onwards.
MYERS
Sleepiness, any other symptoms?
DOROTHY
No energy.
MYERS
No energy.
DOROTHY
No.
MYERS
And has anyone given you any sort of help or advice so far?
DOROTHY
Well I've been having some herbal medicines sort of various things, I've been offered ginseng and things like that but I don't like taking ...
MYERS
Well let me hand you over to a real expert instead of someone offering you alternative therapies, though they may have their place, we can talk about that in a moment. But Leslie what would you want to say then to Dorothy?
FINDLEY
Well first of all sleepiness is not a common symptom in chronic fatigue syndrome itself. It's usually only seen in the early stages of the illness. So that begs the question whether there's something else happening. I think there's no shortcut but to a good assessment by a very good general practitioner or physician to make sure there are no other causes for the sleepiness which this person clearly has acquired, it's not lifelong, it's an acquired disorder. And then I think treatments can be considered once that assessment has been made. You know I think a lot of people because fatigue is ubiquitous, sleepiness is ubiquitous, a lot of people accept it as part of everyday life but this sounds to be intrusive and I think it wants evaluating properly.
MYERS
And are you at all surprised to hear someone complaining of these symptoms perhaps coming on in their 70s?
FINDLEY
No, no my oldest patient is 88 and she's doing very well.
MYERS
That's very good news. Dorothy thanks for the call. Last call I think now to James who's in London with - has had glandular fever, still struggling?
JAMES
Yes I had glandular fever 20 years ago and it was then - because I had to carry on working and all sort of things, I mean it developed into chronic fatigue but since then I've had and I'm now suffering again exactly the same glandular fever symptoms I suffered all those years ago and I just wondered what were the doctor's comments on that.
MYERS
Have to be quick, let's see if we can get a ...
FINDLEY
Relapses occur, they can be triggered by a number of events, including viral infections and it could be you've had a second viral infection which has re-triggered the process and it comes on much more easily or readily as a second run and it should be perfectly manageable as was the first one. Probably we're better now than we were 20 odd years ago when you first had it. So again see a specialist - specialist team.
MYERS
Thank you very much. Do follow that advice James, thanks for that call. Thanks, as always, to all those who have phoned in and the many who have e-mailed us, I'm sorry we can't answer all your individual questions. But thanks for his expertise to our guest Professor Leslie Findley. You can listen to the whole of this programme again and indeed past editions of the programme if you've got the time to do so, go to our website bbc.co.uk and follow the trail to Check Up. You can get more information by calling our free and confidential helpline, that's 0800 044 044.
Join me again next week, if you will, for your questions on trying for a baby when youth is no longer on your side.
ENDS
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