BRITISH BROADCASTING CORPORATION
RADIO SCIENCE UNIT
CASE NOTES
Programme 6. - TATT
RADIO 4
TUESDAY 11/10/05 2100-2130
PRESENTER:
MARK PORTER
REPORTER: CLAUDIA HAMMOND
CONTRIBUTORS:
ANN ROBINSON
LESLIE FINDLEY
BRIAN COLVIN
PAUL CICLATERA
PRODUCER:
ERIKA WRIGHT
NOT CHECKED AS BROADCAST
PORTER
Hello. Today's programme is all about unexplained fatigue - why do some people feel tired all the time, in the absence of any obvious cause for their symptoms?
Are doctors simply missing the diagnosis? Something that can happen with conditions like coeliac disease - a common bowel problem that often causes an apparently inexplicable lack of energy. And if doctors don't ask the right questions, or do the right tests, then the diagnosis, and the opportunity to treat, will be missed.
But what happens when the diagnosis is one of exclusion - when a host of tests come back as normal but the patient is obviously unwell? I'll be talking to one of the UK's leading experts on chronic fatigue syndrome, or ME, to find out how opinion has changed on a condition thought to now affect 150,000 people in the UK, many of whom are children.
CLIP
People often ask me if it's a psychiatric illness but what 14 year old is actually going to put themselves in a wheelchair especially for the 14 months that he's been in one. They might do it for 24 hours but there's no way that they're going to put themselves through what Stephen's obviously gone through.
PORTER
More from worried mother, Julie, later on.
My guest today is Dr Ann Robinson, a GP in North London.
Ann - we are going to be talking about apparently unexplained fatigue, which means we won't be talking about fatigue associated with an obvious underlying physical or mental problem, but that's exactly what we GPs hope to find when a patient comes in with that sort of story isn't it.
ROBINSON
Oh absolutely, I mean the best thing for a GP who's trying to get through a consultation in five or six minutes is if somebody does come in and say they're very tired to be able to immediately pinpoint something and say well you're anaemic, here's some iron or you're a bit low in thyroid, take some Thyroxin. But life, as we all know, is rarely that simple. We know that in 90% of cases that we fully investigate we're not going to find an underlying physical or psychological cause that we can put a finger on but that really doesn't mean that doctors shouldn't engage with the problem.
PORTER
Let's go back to the 10% where we might find something. A quick check list, the sort of things that you would look for when somebody came in with an apparently inexplicable set of symptoms.
ROBINSON
Well I mean the most important thing is to listen to what the person has to say, sounds really obvious but how often do we actually do it. And then to ask the right questions and that will often lead us to the right diagnosis. The things we're looking for are medical conditions like anaemia, like an ongoing infection, sometimes people have a pneumonia, I mean they might have a cough and a low grade temperature that they haven't even mentioned and they've got a pneumonia bubbling away there, sometimes it's the first sign of cancer but not often. And we're also looking for diabetes and an underactive thyroid. And sometimes for sleep disorders, like the people who are snoring all the way through the night, just not getting a decent night's sleep.
PORTER
Patients often underestimate the importance of a good story, I don't know about you but I think actually probably I make nine out of ten of my diagnosis from the story alone.
ROBINSON
Well they always say that you get, as you say, about nine tenths of the whole diagnosis just from listening but I don't think it's really the fault of the patient mostly. It's our fault as doctors because they've found that if the doctor can just shut up and listen for 90 seconds, critical time it seems to be from video analysis of consultations, 90 seconds, a minute and a half, to let the person, as you say, tell their story you will get the diagnosis. But when you videotape consultations in GPs' surgeries most doctors are incapable of just listening.
PORTER
So normally when we order a set of tests we would know what we're looking for and we'll talk a bit more about that a little later on but, for instance, things like thyroid and diabetes, pretty simple answer really from the test?
ROBINSON
Yes, it is pretty simple and you should do the blood tests and I think if somebody comes in saying they're abnormally fatigued, rather than just a bit tired temporarily, I think it is a really good idea to do a full physical examination and to do these basic blood tests.
PORTER
Well basic haematological tests - looking at the physical characteristics of blood and the make up of the cells it contains - are now universally done by doctors investigating severe unexplained fatigue. But although they can detect a problem, they don't always tell you exactly what that problem is. Dr Brian Colvin is consultant haematologist at the Barts and the Royal London Hospitals. So, what can be gleaned from examining the blood?
COLVIN
We might look at the blood viscosity, which really tells you how, in a sense, thick the blood is. So if it's of normal consistency then the viscosity will be low, but if there's something the matter it'll get a bit more sort of treacly, if you like, and that'll come up in the viscosity test.
PORTER
Why might something going wrong somewhere in the body make the blood treacly?
COLVIN
Well because when something goes wrong we make antibodies to whatever is the problem and the characteristics of the blood are just altered by illness really.
PORTER
So non-specific test - if the viscosity is normal that's reassuring, if it's abnormal it doesn't give us a clue as to what's going on but it suggests something's going on. So where might we go next?
COLVIN
Well I think the next thing to do is to do the routine screening tests that any doctor will do, that is the full blood count measuring the haemoglobin, that's the red stuff in the blood that carries the oxygen, the white cells and the other cells that float about in the blood and these tests are just looking for some clue as to whether something is wrong.
PORTER
What can you as a haematologist learn by looking at the full blood count?
COLVIN
Well the numbers of how many cells there are, their size and shape, are all given in a numerical fashion by the printout from the machine. Once you've got those numbers and the characteristics you can stain a blood film, which means you spread the blood on a glass slide and look at it under the microscope. And then you can study the exact shape and appearance and colour of the white cells and the red cells and make a lot of judgements as to what, if anything, is wrong.
PORTER
Going back to the patient - the main complaint is unexplained fatigue - so what sort of things might you pick up on a full blood count, can you give me some examples?
COLVIN
Perhaps the best example in a young person who's complaining of fatigue is they might have glandular fever. And this is an infection with a virus very common and you look at the film and there are white cells, so-called lymphocytes, that are bluer than they ought to be, a funny shape and you immediately say to yourself this is glandular fever.
PORTER
Now what happens if the doctor, who's ordered that full blood count, hasn't thought of glandular fever and hasn't specifically asked you to do that test?
COLVIN
Well I think that the next thing to do is either to go back to the doctor saying this looks like glandular fever, why don't we do some confirmatory tests or I think really in these circumstances it's quite reasonable to go the extra mile and perform the confirmatory tests yourself without going back to the doctor. Because after all the reason for the consultation is to solve the clinical problem.
PORTER
What about other things that you might pick up - presumably anaemia is a common cause and it's not always picked up by the clinician looking at the patient, they're not obviously pale are they?
COLVIN
Pallor's a very difficult thing to determine, you can look at people's eyes, you can look at people's mouths but you're right anaemia's not that easy to pick up. And when you look at your blood printout it will tell you whether the haemoglobin concentration is normal or not, that is whether there's anaemia or not and it will also give you quite a lot of indication as to what the reason for the anaemia is if it's present.
PORTER
Dr Brian Colvin.
Ann, there is a perception among the public that if you come in and have a blood test that the doctor is looking - has tested you for everything but that's not the case.
ROBINSON
No it isn't at all and often it actually leads you into a false sense of security really, you think oh well I've had the blood test I must be okay. But of course a blood test will check for the things that we've just heard about but they don't tell you if you've got some forms of cancer, they don't tell you if you've got pneumonia - I mean most conditions really one could argue don't have a specific blood test.
PORTER
And even those that do you often have to specifically request them. I mean for instance we heard there about a glandular fever test, now that might be done routinely if the haematologist noticed something wrong with the film but to get one done - to be sure of getting one done you'd have to ask for one wouldn't you.
ROBINSON
Yes, exactly. I'm often really surprised actually that people have blood tests done and they don't ever ask - they say was it okay doctor? They don't say to me - what were you actually testing for? - or perhaps more importantly - what did you fail to test for doctor? And I think it's really useful if people ask for a printout of their results and get the GP to explain what they were testing for and what the rationale was.
PORTER
When we mentioned last week that we'd be looking at unexplained fatigue today we had a flurry of e-mails keen to highlight various conditions that our listeners think are often missed - things like tic borne infection, Lyme disease, hepatitis C. And that's a nagging doubt amongst us clinicians as well isn't it, we worry that we're missing something.
ROBINSON
Yes that's true. I mean we don't really worry that we're missing the obvious because the obvious is usually obvious. We worry about missing the not so obvious. And it's not always that easy, which is why I think people who feel unwell, who feel fatigued and who don't feel they've got to the root cause of it but are concerned that there might be something there do need to keep going back, don't need to just perhaps accept it. But as I say very often at the end of all the tests, no matter how specific, no specific cause will be found.
PORTER
Well one condition that can be missed is coeliac disease - primarily a problem that presents with bowel symptoms but fatigue is a common feature too. And if you don't mention your bowel symptoms, and your GP doesn't ask, then the diagnosis won't get made and you won't get better. Claudia Hammond reports.
SMITH
I would go to work Monday to Friday and spend best part of the weekend in bed because I just was so tired. But there's something about that tiredness that is excessive.
HAMMOND
For 15 years Jacqui Smith had to put up with this level of exhaustion, as well as bowel problems. Now and then she approached her GP, but never seemed to get to grips with it, until she decided to take matters into her own hands.
SMITH
I had chronic diarrhoea, bloatedness, tiredness, being anaemic. I was really quite poorly. And I needed to do something myself and I thought because I had irritable bowel that if I extracted wheat out of my diet then things would get better. And of course once I started to do that I felt better.
CICLATERA
Coeliac disease is a response to gluten, where you get damage to the small intestine, which results in loss of the absorbative area and so patients usually present with diarrhoea but can present with being either tired or anaemic or other complications of the condition.
HAMMOND
Dr Paul Ciclatera is professor of gastroenterology at Kings College London. It's still not exactly clear why fatigue is a symptom of coeliac disease.
CICLATERA
The tiredness can become very severe, so that patients find that they spend most of the working week in bed. The condition used to present most commonly in young children when they were starting to be placed on solids but now it's much more common to be diagnosed in the roughly second, third decades of life and there's another peak in the fifth, sixth.
HAMMOND
And once people have been diagnosed how easily treatable is it?
CICLATERA
The treatment is very straightforward - they have to go on to what's called a gluten free diet where they avoid food products that contain wheat, barley, rye and I advise patients not to take oats.
HAMMOND
If people do that how soon will they see a difference in symptoms like tiredness say?
CICLATERA
They usually start to experience significant improvement in their symptoms after about five days. And when you've seen people who've been ill for 20, 30, 40, 50 years and they can get better in five days it is pretty amazing.
ACTUALITY NUTRITION AND HEALTH SHOW
Welcome ladies and gentlemen to the Nutrition and Health Show's cookery theatre. For our next session entitled Gluten Free Cooking Made Easy, please welcome chef de cuisine Chris Batton and dietician ...
HAMMOND
A diet without any bread or pasta does sound pretty restrictive but at the recent Nutrition and Health Show in London they showed just what you can make on a gluten free diet.
ACTUALITY
I'm going to make a starter which is based on goats cheese, goats cheese panacotta, which sounds delicious. And it's served with a tomato and basil sorbet...
HAMMOND
I caught up with Norma McGough, head of the diet team at the charity Coeliac UK.
MCGOUGH
The gluten free diet is quite complex in that although it sounds very black and white people with coeliac disease do have different levels of tolerance. But there is a host of gluten free foods available these days in the supermarkets, not just the health food shops. Gluten free foods are also available on prescription for people medically diagnosed with coeliac disease.
CICLATERA
If a mother has coeliac disease one way of dealing with it is to actually put the whole family on a gluten free diet. I see approximately one patient a year who is unwell with coeliac disease whom my advice is to buy a separate toaster from the family toaster because the crumbs from ordinary bread coming across on to the gluten free bread is enough to make some of these people unwell.
HAMMOND
Is there anything else coming up in the future, are you optimistic that there might be other treatments, other than a gluten free diet?
CICLATERA
Well we're involved in a project where we're actually identifying those parts of wheat which are toxic and actually create a gluten free plant with the baking and nutritional qualities of the original wheat. This is obviously a completely novel approach but in my opinion within the next five years we'll completely revolutionise the treatment of this condition.
HAMMOND
Even though coeliac disease is getting better known there are still misunderstandings.
SMITH
Some people think you're just being faddy, I find it very difficult when people say oh vegetarianism is more important, actually it isn't, vegetarianism is a choice, mine is a medical condition and I'm not being fussy because if I eat it I'm unwell.
HAMMOND
But it's possible that as many as 90% of people with coeliac disease haven't made these changes because they don't even know that they've got it, even though there is a blood test for it.
CICLATERA
I think there isn't widespread knowledge of the use of the blood test to be able to screen for the condition.
HAMMOND
So are these blood tests quite straightforward, I mean can a GP just order them if they want to?
CICLATERA
Absolutely, completely straightforward, so that all the GP has to do is to ask for the blood test to be done.
SMITH
I took a couple of years really to recover because it was later found out that actually I couldn't tolerate the gluten or the wheat, so I'm supersensitive. I mean I'm now a very active person, I go to the gym three or four times a week, much more energy, a different outlook on life, it's great.
PORTER
A revitalised Jacqui Smith talking to Claudia Hammond.
You are listening to Case Notes, I'm Mark Porter and I am discussing unexplained fatigue with my guest Dr Ann Robinson.
Ann, why is it that we miss so many cases of coeliac disease?
ROBINSON
I think it's because it's a long term condition that sort of creeps up on people and often they haven't put two and two together themselves. I mean it's probably unusual for someone to come and say I think I've got coeliacs because I know every time I eat a lot of wheat I feel particularly bloated and unwell. It's something that creeps up on them over years. And they sort of get used to feeling below par. So it can be difficult for the person to pinpoint it and obviously if it's difficult for them to pinpoint it and they're living with it, it can be quite hard for the busy GP to think of it.
PORTER
The initial consultation - the asking about bowel symptoms with fatigue might not be the first thing that springs into the doctor's mind. But we are much more aware of it now than we used to be.
ROBINSON
We're definitely more aware of it. I mean every time I go to the supermarket now I see shelves of gluten free products, which always prompts me to think oh I wonder who I've missed today with coeliacs disease. But you know gluten free products are out there now and that probably makes some people come to the diagnosis themselves when they see that. And people are talking about it more and as we heard there's a test for it now, which wasn't widely available previously. So I think all those things are coming together. For me, I must say, the thing that brought it to my attention was when a friend of mine developed it and she'd been gradually losing weight and had some diarrhoea and bloating but didn't think much of it and felt very tired after the birth of her second child. She just sort of put it down to lifestyle things and didn't go to the doctor for ages with it and even then it took another six months. But like Jacqui, once she went on to the gluten free products she was like a different person.
PORTER
Now coeliac disease is something we can certainly screen for, the diagnostic test is often done in hospital, but we can screen for it at general practice level, when should we be referring - when do we stop investigating people that we can't find anything in or when do we decide to send them on to another colleague?
ROBINSON
Well I think quite often it is really useful to ask another colleague, like another GP, to come and talk to the person as well to get a fresh look at the problem, bring some new ideas, that also tells the patient that you are concerned and you're really trying to find an answer. I personally always refer children with chronic fatigue, unless it's very obvious why, because children are not normally fatigued and it worries me. If I'm missing depression in somebody under 18 I want some specialist advice and perhaps there's an underlying condition I should be looking for. And that includes chronic fatigue syndrome - I don't feel confident to deal with that myself as a GP. If I'm worried that there is an underlying disease - I had a patient who turned out to have a cancer of his kidney that really was difficult to pick up but we knew that there was something else going on, various blood tests and things were pointing to it.
PORTER
Often it's that little man or woman that sits on your shoulder isn't it, that says something's not quite right here, you don't know what it is but it gives you that nagging doubt.
ROBINSON
Well a man in his mid-60s who'd always been very, very active and suddenly for no obvious reason at all - he wasn't depressed and there was nothing else going on and he was profoundly fatigued. A man who played 18 holes of golf every day, who suddenly could hardly get out of bed. Clearly this man needed to be referred, even though we couldn't find something. And as I say he did turn out to have something. But that's the exception really. And sometimes there are people who just feel that we are not giving them the service they feel that they need and want and they want specialist advice. And I would say it's a crazy GP who would refuse to refer someone like that.
PORTER
Well in many cases no demonstrable problem is found, but the picture fits a recognised pattern - that of chronic fatigue syndrome, also known as myalgic encephalomyelitis or ME. Historically the condition has not been taken that seriously by most doctors - many of whom felt it was an unusual presentation of common psychiatric problems like depression rather than a discrete clinical entity. But recent evidence showing abnormal brain activity in people with ME, and a better recognition of the classic symptoms that occur with the condition has meant it's now a much less controversial diagnosis than it was in the days when the media labelled it "yuppie flu". Dr Leslie Findley is a consultant neurologist with a special interest in ME - so what exactly is it?
FINDLEY
This is a pathological fatigue state affecting both physical and cognitive performance. It's substantial, it's new onset, so it's not lifelong, it's acquired and it has to be present for at least six months. The presentation most patients with chronic fatigue syndrome - ME - is very typical and it's muscle pains, recurrent sore throats, recurrent glandular enlargement, new onset headache, mood disturbances, sleep disturbances. Patients will complain of physical fatigue, inability to start or sustain activities, inability to think clearly and most importantly that when they try and push and increase their activities there is a prolonged recovery time associated with an exacerbation - an increase - in the fatigue and this may go on for several days or indeed weeks.
PORTER
What about trigger factors, are there classic trigger factors that we should look, I'm thinking here possibly a viral infection?
FINDLEY
When we talk about chronic fatigue syndrome - ME - we talk about predisposing factors, trigger factors and perpetuating factors. Predisposing factors include history of certain other conditions, for instance asthma, eczema, hay fever are more common in patients prone to fatigue. Symptoms of irritable bowel. Previous history of low mood states and other psychological disturbances. All these seem to give a clinical loading to the vulnerability of developing fatigue. When we come on to trigger factors the common trigger factor is infection, usually viral infection, it may not be serious at the time, can be considered a serious viral infection, for which the recovery does not really occur.
PORTER
A problem all too familiar to Julie, whose 14 year old son still needs a wheelchair to get around nearly 18 months after contracting glandular fever - a common infection caused by the Epstein Barr virus.
JULIE
It was the beginning of the May bank holiday last year when he was playing football all day on the Sunday because he played as a goalkeeper for his local team. The next day he woke up feeling like - he described it as being flu, which he'd never had flu or anything like that before, so that he felt too unwell to go to school. He had no energy, was just only able to lay on the settee, unable to eat anything and his glands were very big. He had numerous blood tests which in the beginning never picked anything up and then later on he went on to have the Epstein Barr virus, which is a type of glandular fever blood test which wasn't showing up on the normal other blood tests. And in the about I think July of last year that came up positive that he'd actually had the Epstein Barr virus at the beginning of May and he'd also had a streptococcal infection on top of that. And I think the two viruses together had actually knocked out his immune system and caused the chronic fatigue. We have been told that one in a thousand children that get the Epstein Barr go on to get ME and unfortunately he was the one in a thousand.
FINDLEY
It can be extremely severe, they can be totally bed bound and totally dependent on their family and friends for every activity. The average duration of the disorder, consensus view would say three to five years with at least 40% of patients never returning to previous levels of functioning. However, I have to follow that by saying that fortunately many patients don't develop severe fatigue syndrome.
PORTER
And what is the latest thinking on how we should be managing these people?
FINDLEY
Whilst many officials will say well there is no definite treatment for chronic fatigue syndrome, if you treat the components of the illness then that person's illness will be reduced in duration and in severity and they will have a more - an easier recovery. So it's assessment and treating the individual components of the illness. There are one or two treatments which are put out as being the proven treatments and one, for instance, is graded exercise - well graded exercise is really about fitness training and this may be appropriate for a small percentage of patients with very mild fatigue. But for the more severe types a much more subtle approach to activity promotion is required, supervised by therapists who are trained to manage fatigue syndrome. Another approach is of course cognitive behavioural therapy. This is really a talking therapy to interact with the individual for them to find - explore themselves to find if there are any factors or beliefs which may be impairing their recovering. And at the same time applying a lifestyle management programme.
PORTER
Are there factors in this story that you can look at and say well actually I can be quite positive in your case, I suspect you will pull through this and pull through this quite quickly?
FINDLEY
The answer is absolutely yes. I mean we know, for instance, that patients who have a very slow onset - their prognosis in terms of duration of illness, severity and recovery, is worse than someone who may have a very acute onset, coming on after an illness of a few days. I think also the associated conditions - most patients suffer some general pains but if pain is severe and uncontrollable then it's unlikely that person will recover easily from the fatigue state.
PORTER
What about the difference between children and adults - is there any difference in prognosis there?
FINDLEY
Children can be very difficult because it comes on at a time when they're developing physically and psychologically, they're heavily into education and so on. And education in general with the severe patients has to take second place. A lot of parents are very keen to get their children through examinations at certain times but frankly stress is a major factor which will exacerbate and perpetuate the fatigue state. So it's getting the balance right.
JULIE
The very outgoing bubbly child is no longer there, he's very quiet, no longer going to school with his friends. Before his illness he was in top sets, etc., at school. Unfortunately for him now he finds it very difficult to read and very frustrating - his brain can't seem to work to help him to read. I think it's a very cruel illness. I think the most important thing for us is that every day we do see tiny improvements and all the time that you've got that then I think that helps you.
PORTER
Julie talking about her son's ongoing battle with chronic fatigue syndrome or ME.
Ann, I think Leslie's point there that there isn't much we can do about the underlying condition but a lot we can do to ease the symptoms applies to a lot of cases of unexplained fatigue doesn't it.
ROBINSON
Absolutely, I think it does. And I think you know listening to those stories, which are really quite heart rending, especially in the case of the child who's affected, just reinforces to me how one's got to keep working in partnership with the patient. And the doctor really needs to show that just because they can't find a curable or cut-outable reason for this doesn't mean they're not interested and they're not concerned. I think it needs a little bit of working together to - because it's an ongoing thing and it's going to need support from the doctor. I think if you haven't got a sympathetic doctor and you've got this sort of condition you need to go out and find one.
PORTER
And one of the controversial areas of course with ME and with other causes is that when we start to talk about looking at people's mood - if we said we're worried about people getting depressed, because people get depressed with all sorts of - it's an accompaniment to all sorts of other illnesses don't they and we try and treat that, patients often feel that we're somehow dismissing their symptoms and saying that they're all psychiatric in origin.
ROBINSON
I don't really understand why it's seen as so stigmatising. We know that if people have a stroke or Parkinson's Disease they very often will get depressed, I mean they're understandably depressed because of their condition but also depression goes along with these conditions. And I think it's very remiss of us all not to recognise it and not to offer treatment for it. The treatment can be talking therapies - like cognitive behavioural therapy - and/or drug therapies like antidepressants. But I don't think that means - it doesn't mean that the doctor is saying to you oh you know you're just depressed, go away, here's an antidepressant.
PORTER
Ann, time dictates we must leave it there, Dr Ann Robinson thank you very much.
Next week I'll be exploring the world of cosmetic surgery - from the latest in breast augmentation, to the rapidly expanding world of quick fixes like Botox, fillers and light and laser treatments, where you can literally lose years in your lunch hour.
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