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Programme 2. - Chronic Fatigue Syndrome
RADIO 4
THURSDAY 01/12/05 1500-1530
PRESENTER:
BARBARA MYERS
CONTRIBUTORS:
LESLIE FINDLEY
PRODUCER:
ANNA BUCKLEY
NOT CHECKED AS BROADCAST
MYERS
There's a lot we don't know about ME or chronic fatigue syndrome. What causes it? Why are the symptoms so different from one person to the next? And how is it that some people get better - and others don't.
For a long time there was a heated debate about the condition. But not any more. The World Health Organisation now recognises it as a diagnosable disease. The Chief Medical Officer identified it as a major health problem. It does cause considerable distress and disability to patients. And it can and should be treated.
Sadly specialists in chronic fatigue syndrome are few and far between. One of them is Professor Leslie Findley, who is with me to take your calls today. The number is 08700 100 444. Or e-mail checkup @ bbc.co.uk.
We've been overwhelmed by callers and those who've e-mailed us. Margaret has come to the top of the heap, Margaret is in Middlesbrough and is asking about a simple test - is there a simple test to diagnose ME, what's behind your question Margaret?
MARGARET
I'm rather concerned about my husband. He's a schoolteacher in special needs. And for the past year and a half or so when he gets a cold he's always been worse you know than the normal and then about last February, March he was really poorly for about five weeks. And he's extremely tired - he'll come home from work and it's not him - he used to cycle to work and now if he cycles for one day he suffers - he's really tired. He has no energy, he's been to doctors and had blood tests which show he's fighting off a virus at the moment but there's no hint from them as to what's causing the tiredness, they just sort of say it's a virus. And now it's started again, he's into the fourth week, he's back at work of course because he only takes a day or two off.
MYERS
So it would be good to know if you can definitively this is or indeed it isn't ME, is that possible Professor Findley?
FINDLEY
Unfortunately with the information given it's impossible to say whether this is chronic fatigue syndrome/ME or whether he's suffering from recurrent viruses or other causes.
MYERS
I mean it would make it easier if they were a test, is there anything on the horizon?
FINDLEY
You're asking for a simple blood test, the answer is at the moment no.
MYERS
Okay, so what should Margaret do on behalf of her husband - watchful waiting?
FINDLEY
Well I think she's doing the appropriate - taking the appropriate action by consulting her GP and if she has serious doubt then he should be referred on to a specialist.
MYERS
Okay thank you very much for that. And I'll move to e-mails, of which we've had very many today and there are lot which actually want us to understand better what we're talking about here, which is to say the descriptions are quite dramatic. Philip Taylor says that he has ME, he no longer has a life, he says he lost his career - he was a teacher - he can't attend social events. Paula says that she never recovered from a bad flu attack, she changed from being a fit and energetic person to a shambling exhausted wreck. She says that she has the sense that someone has thrown an enormous heavy blanket over her and that she's seeing the world through grey fog. Now you're seeing patients day in and day out, does that sound familiar?
FINDLEY
It sounds very familiar, in fact it takes me back to the clinic this morning. I think it should be underlined that chronic fatigue syndrome/ME almost certainly is a hydrogenous group of disorders and that patients have a wide variety of symptoms and each patient's symptoms have to be analysed for them and that's the way treatments are approached.
MYERS
Let's go to our callers again, Sue is in Herne Bay and wants to know about getting a diagnosis. Sue?
SUE
Hello, yes for 21 months I've have repeated bouts of flu-like pains and debility with other infections like sinusitis, throat and ear problems, dizziness, nausea, throbbing heart and head. And I've had two severe bouts - one at the beginning and one currently and in both times I've felt as though my head was ill, this time my whole body seems to have shut down - fever, pain, swollen glands, extreme weakness, infections. And I was bedridden for two weeks with no improvement. My doctor's treated the infections and he's tried blood tests in January this year which were inconclusive and he's just given me some more blood tests and he's referring vaguely to a post-viral problem but he hasn't been specific and I'm just wondering what it might take to achieve a diagnosis and if there's anything that I can do?
FINDLEY
Well I have to say we're talking about very complex disorders here and it is difficult to be dogmatic, particularly early in the condition. If your doctor's saying this is a post-viral syndrome he's obviously not committing himself as yet, quite rightly, that this is chronic fatigue/ME. I think that if he's in doubt then again a specialist opinion should be sought. However, I would underline that the government has actually said that the diagnosis and management of chronic fatigue syndrome/ME should largely rest with the general practitioner.
MYERS
But now how does that fit with other e-mails that we've had saying that GPs seem to be pretty unsympathetic and I think in your own experience you've found that they're a little bit reluctant to get up to speed on the business of ME?
FINDLEY
Well I think it's easy to be hard on GPs, I think they have a hard time. But I think in fairness many of them have not been educated about chronic fatigue syndrome/ME it wasn't part of their basic medical curricula and I think enlightenment is growing exponentially, more and more GPs are attending courses and there is more emphasis on the need for knowledge.
MYERS
So what are you saying ultimately though to Sue that if the GP doesn't take it any further - I mean how long should you persist before you say look I really need to know, my life's not together here and I need a proper diagnosis from a specialist?
FINDLEY
Well if symptoms go on for a period of time, other than the time that we'd normally expect after a routine infection, then - and the general practitioner is uncertain - he must refer on for a specialist opinion. And the patient has a right to that.
MYERS
Let's go to another call, thank you for that one though Sue. But it's related I think - Jane Colley's in Leicestershire and is concerned about her child and getting a diagnosis, which took a length of time - how long exactly Jane before you found out?
COLLEY
It took me four and a half years to get a proper diagnosis for Elizabeth . She started being ill just before her 10th birthday and she was getting on for 15 before we had a proper diagnosis. We did see a specialist and we were told that she had the post-viral blues and I did keep attending the doctors. And in the end a GP gave me some advice which at the time for her to push herself out of the illness. And after that particular piece of advice Elizabeth was no longer able to walk, she couldn't read and she couldn't write and she really hasn't recovered since, since that stage.
MYERS
And how did you get the diagnosis in the end?
COLLEY
In the end I did a lot of searching and I was given the name of a well respected paediatrician who specialises in ME.
MYERS
So I don't know if that's a familiar tale but common sense suggests that that's far too long to wait for a definitive diagnosis for a child of 10, whose was 14½ or 15 before you're clear what's going on.
FINDLEY
Well it's very difficult to diagnosis chronic fatigue syndrome/ME - at the age of 10. And many patients with symptoms at that age will in fact - they will pass off. But clearly this didn't and although it was a long time the right course was taken, in that a specialist was called - appropriate specialist was found - and the diagnosis was given. I mean it should have been given earlier. But this is a really difficult area - the pre-teens, teens, with fatigue states, I mean there are so many other possible causes. And it's an uncomfortable area for many doctors.
MYERS
How helpful has it been Jane, for you and for Elizabeth , to have a diagnosis, because it's not a great diagnosis to get is it?
COLLEY
Well I think partly because it took so long to get the diagnosis, at her school a lot of people were very sceptical about her and she sat her GCSEs in this school year and on the odd occasion she went into school, from February through to the summer, everybody stopped speaking to her at school because she - they decided she was a fake. And that had a terrible impact on her. In the end she had to sit most of her exams at home in bed and despite all the school she'd missed and all the unkindness that she faced she achieved straight As in her GCSEs which is a testament to her strength of character, I think.
MYERS
So it was really important to have a diagnosis because she was being considered otherwise to be making it up. And we do hear this story that people - the worst thing for them is that no one seems to believe them, including in some cases their own doctors.
FINDLEY
It has to be said there are many mimics to chronic fatigue syndrome/ME in the teenage period. It's a difficult diagnosis, there are few specialists that are really competent to diagnose and manage. And I think the health service is beginning to address this.
MYERS
Let's go to Joanna - and thank you for that call Jane - let's go to Joanna Marshall, she's in Andover, again picking up this point about whether it's all in the mind, whether doctors give it particular regard, what's been your experience Joanna?
MARSHALL
Well just that - all in the mind. [Indistinct words] I've had ME for over 20 years now and I'd like to know why when there is now medical evidence that people with ME have problems with their muscles, hypothalamus, possibly their genes etc., and when the World Health Authority has stated several years ago that ME is a neurological illness why do so many doctors still believe that it is all in the mind and patients are being directed to psychiatric services more and more frequently?
MYERS
It's a very fair question.
FINDLEY
Well I think it is a very fair question.
MARSHALL
I do have one more question at the end.
MYERS
Okay let's just ...
FINDLEY
I need to try and tackle this one first. It is a very fair question. I don't think it's true that more and more doctors believe it's all in the mind ...
MARSHALL
[Indistinct words]...
FINDLEY
Well allow me to finish. It's not true that more and more doctors believe it's all in the mind, I think now less and less. But there are a hard core of doctors that do take that view and for most patients that is totally incorrect. It's a question of education - it wasn't in their medical curriculum, they've never been taught about it. Now there is much more opportunity and much more emphasis from the health service. So I think that you'll find that that problem, which certainly exists and did exist to a greater extent, will get less and less.
MYERS
Is the complication that there are psychological overtones, which is to say if you're feeling very ill then you may very well be depressed?
FINDLEY
I mean there are psychological overtones in many patients, as there are in many chronic illnesses. I mean we can't avoid the idea it's either mind or body is a hundred years old but it's not primarily for most people a psychiatric disorder. And this questioner is quite correct.
MYERS
You had another question or point Joanna, quickly please.
MARSHALL
Yes, I wonder Professor Findley as a neurologist whether you see any treatment in the near future because I really would - I don't want to go through another 25 years if possible?
FINDLEY
I'm treating my patients all the time and the majority of them are getting better. What you're asking me is there going to be a quick fixit pill that one can take and remove chronic fatigue syndrome/ME, well it depends what type you have because we're looking at a group of disorders and everybody, every patient, is an individual with this and their symptom complex varies. So the answer is no, no quick fixit pill, almost certainly not in the foreseeable future or even the distant future but patients can be managed and I think you need to see a good specialist with a supportive multidisciplinary team.
MYERS
If we could take it on to aspects of management - good management. Let's go to another call, we've got - who have we got - Nyree who's in Buckinghamshire and has found something that I think works for you, can you tell us a little bit about that Nyree?
NYREE
Hi, I didn't catch the first part so I tell you a bit about?
MYERS
Yes any treatment that may have worked for you.
NYREE
Yeah, well, yes, my own treatment. I was - I sort of stopped soon after the twin towers fell down.
MYERS
I'm sorry I missed that, what did you say?
NYREE
I actually stopped and fell with ME in the same month the twin towers came down. I was very shocked by what happened and previous to that I had a load of chest infections and pneumonia. I was seen by a private specialist who said yes you've got ME and was straightaway packed off to [indistinct word] to do graded exercise. [Indistinct words] about ME, I got everything myself.
MYERS
Nyree I'm really sorry, I'm going to just hope that we got that - the phone line was really quite bad there - but I think you were asking about graded exercises and the role of exercises versus rest. So what's the way forward for people, particularly if they really are incapacitated and don't feel like doing exercises?
FINDLEY
Well any treatment programme has to be individualised for that person and it would depend on a lot of factors, including the severity. Graded exercise - I would much - that is in itself okay for those with relatively mild chronic fatigue syndrome but we're talking in general about patients who are more severely affected. And we tend to not use graded exercise so much as activity programmes using activities of daily living in a structured format, guided by a trained therapist, using rest and activity in a structured manner. And that re-establishes normal patterns of functioning. Later on in the evolution of their recovery then they can go on to more simple exercise programmes. But it's got to be a holistic programme, it's got to be directed by a skilled therapist.
MYERS
It's interesting you make the point about being holistic, I think that's exactly what Phil Taylor has come on to talk about, he's in Tyne and Wear. Yeah you'd like doctors to have this more holistic approach to the patient, have you suffered from not having a doctor who looks at you in the round?
TAYLOR
Yeah well what happened to me is I've received excellent treatment from various consultants and so on in specialist areas and I've been very pleased and happy with what they've done but there's been absolutely no way in which the summary, the totality of what I've got has been appreciated. I've got various medical problems associated with ME and experts working within those different areas but nobody, absolutely nobody, has any idea about the totality of my condition.
MYERS
Well Leslie's nodding his head.
FINDLEY
Well I think that is a real problem that's undervalued, the fact that the patient has to be looked as a whole person and where he is and you have to treat all the associated conditions if you're going to allow that patient to recover. It's no good treating one particular part of him or one particular symptom, he has to be taken as a whole package.
MYERS
Well what's been in particular left out, if you like, of your treatment plan do you feel Phil, that someone just hasn't really kind of got hold of, haven't grappled with and yet's important to you and the way you can live your life with ME?
TAYLOR
Well the big problem is obviously that the key thing is lack of energy and the inability to function as a normal human being. And I've had various aspects of my illness treated very sympathetically, I think the NHS is the greatest organisation on earth and the 91Èȱ¬ being the second one obviously. But the thing is that there literally isn't - there isn't any attempt to put all the factors together. The structure of the NHS doesn't seem to allow that.
MYERS
Well again there's a sympathetic nod.
FINDLEY
I think that's absolutely correct. A fully comprehensive multidisciplinary team is a very expensive investment or relatively expensive investment but it has to be that if we're going to deal with this problem.
MYERS
Do you feel we've made any progress over the last few years Leslie?
FINDLEY
Oh absolutely. I mean better recognition, better diagnosis. The government recognises this is a problem. It's investing in development of community fatigue teams, so that the primary care physicians can be supported and that can take care of most of the straightforward, uncomplicated, fatigue patients. Clearly there's going to need to be secondary services developed in hospitals to deal with the more complex and the more diagnostically difficult.
MYERS
Let's go to Gareth, who's in South Wales, and is asking about treatments, perhaps taking on what we've been talking about, what in particular do you need to know Gareth?
GARETH
My GP has been very supportive from the start - Dr Saunders has been great. When I've gone to see the incapacity benefit doctors they've dismissed me virtually as if it's all in my mind and I'm suffering from depression, when I point out to them that depression is a cause of my condition, not the other way round type of thing. But with my GP all I'm on is anti-inflammatories and painkillers. I was first diagnosed with chronic fatigue about three years ago and then about six months later I went to see a specialist who said it was fibromyalgia. Now on the research I've done they're both very, very similar.
FINDLEY
Well you're quite correct. Depression is common in patients with fatigue syndrome and it may be the patients are ushered in with depression, depression may go into fatigue syndrome. Likewise muscular skeletal pain is de rigour in fatigue syndrome and some of it will be indistinguishable from fibromyalgia. We're dealing with an overlapping group of disorders, that's why the patient has to be assessed as an individual. But as part of it a lifestyle management programme is essential, it's not just a question of giving out pills and making diagnoses, it means lifestyle adjustments - reduction of stress, a living style which is appropriate to the symptoms.
GARETH
Yeah, I quite agree with that. I mean I've done a lot on a self-management basis - reducing stress in my life - what I find is that I'm extremely tired all the time and if I do something a little bit like going shopping, for example, even if I'm only out for 10-15 minutes by the time I come back I'm absolutely exhausted. So I go from tired to exhausted very, very quickly and it then takes me a long time to build up sufficient energy to even attempt to do anything.
FINDLEY
May I make a suggestion over the air that you've done your own programme, I think you need to see a specialist therapist to get a programme for yourself so that someone else can be the external pacer of this.
GARETH
I'd love to, I keep asking my GP are there any specialists and he tells me no, so.
FINDLEY
Well go back and ask him again because there are.
GARETH
Right, marvellous, okay and can I quote your name as well?
FINDLEY
You can if you wish, everybody else does.
MYERS
Thanks very much for that. We've had lots of e-mails about alternative remedies that people have found, not necessarily remedies - they're not going to cure the condition I suspect but they are going to make people feel better and that's a big part of the story. 91Èȱ¬opathy has been suggested, acupuncture, we've had John in Luton talking about fish oils. So quite a lot of different things that if you're looking at lifestyle issues no harm in trying them I guess.
FINDLEY
If the patient's got a proper programme and is properly diagnosed and finds alternative medicines helpful then certainly I would support it. But these are not getting at the core of the problem but they have good effects in controlling pain, controlling wellbeing, relaxation and all these are important - sleep - all these are important factors. And I would argue that the only restrictions I would put is if the treatment they're out looking for is harmful - potentially harmful to themselves or if it's ultra-expensive, because there are plenty of people out in the big world who are peddling remedies which have no basis in - any logical basis or otherwise and are expensive. And patients do need advice and protection in those areas.
MYERS
Thank you very much. We'll go to another call - Helen Watson is in Lancaster and wants to know about the genetic basis of ME. Is that what you've heard that it maybe genetic?
WATSON
Hello yes, well I've had ME myself for many years now, having never recovered from glandular fever about 24 years ago. I have a daughter who is 20 years old and this year she has been diagnosed with chronic fatigue syndrome, although in her case there was no apparent viral infection that triggered it. So I'm wondering if she's inherited the susceptibility from me and if she were herself ever to have a family would her children be likely to get the illness in the future?
FINDLEY
If I can answer that - it's not directly inherited but obviously somebody who develops chronic fatigue syndrome must be predisposed, otherwise they wouldn't get it. And it's also almost certainty multi-genetic and probably the slight loading you have towards developing it, some of it has been passed on to your daughter. But that's true of all of us with a whole range of conditions.
MYERS
Does that help, is that useful to know?
FINDLEY
I very much doubt if your daughter's offspring are going to be vulnerable to chronic fatigue syndrome.
WATSON
Right, so it isn't something that she ought to have in mind in the future then when considering a family?
FINDLEY
Certainly not, no, no, no, no absolutely not.
MYERS
Thank you very much for that call and thank you very much to all those who have e-mailed and phoned us today, we have had a really overwhelming response, we've hit here on a very widespread common condition and a certain amount of confusion around it. But thank you very much indeed to our expert today for guiding us through that - Professor Leslie Findley. If you need more information you can of course go to our website, that's www.bbc.co.uk you can follow the trail - radio4/science to the Check Up website. Next week join us again if you will we'll be back and talking about stammering.
Ends
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