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TX: 05.11.07 - ME Discussion

PRESENTER: PETER WHITE and JOHN WAITE
THE ATTACHED TRANSCRIPT WAS TYPED FROM A RECORDING AND NOT COPIED FROM AN ORIGINAL SCRIPT. BECAUSE OF THE RISK OF MISHEARING AND THE DIFFICULTY IN SOME CASES OF IDENTIFYING INDIVIDUAL SPEAKERS, THE BBC CANNOT VOUCH FOR ITS COMPLETE ACCURACY.


WHITE
Now it's with some trepidation that we begin our week long investigation into the illness ME or Myalgic Encephalomyolitis, to give it its proper medical name. We've not had such a big response to a series trail prior to broadcast in recent times - already over 200 posts have been lodged on our Radio 4 message board about our ME initiative. Some are obviously expecting us to fail to do justice to the subject, to miss the most significant issues about the condition and to over-represent received medical opinion, compared with the experience and knowledge of individual patients. ME is a condition which guarantees controversy, many of those who have it seemed to have ill disguised contempt for those who treat it. Some experts we've contacted refused to speak publicly on the subject for fear of the hostility they would generate from some patients and many patients feel that ME is not understood or treated seriously by almost anyone except those who suffer from it.

WAITE
Treated as little more than hysteria and dismissed as yuppie flu in the past, ME is now officially recognised as a neurological illness by the World Health Organisation. And this summer the National Institute for Health and Clinical Excellence published its first guidelines, advising doctors how to treat the condition. Something which also created controversy.

Well this week on Radio 4 You and Yours and Case Notes will be asking what the illness is, how it's diagnosed and why it provokes such strong debate. We'll be looking at the treatments available, both on the NHS and privately. We'll be talking to those with the illness and those recovering from it. And looking at what research is being done.

But first here are some essential facts about ME introduced with a track from the Scottish band Belle and Sebastian whose lead singer, Stuart Murdoch, had ME.

ME FACTS
ME or Myalgic Encephalomyolitis is a chronic disabling illness. It's also known as chronic fatigue syndrome and post viral syndrome.

There's no specific test for ME, doctors have to exclude other diagnoses that can cause ME like symptoms, such as depression or thyroid problems. So it can take time to reach a diagnosis.

It can affect men, women and children from all social and ethnic groups. Women are more likely than men to have ME.

The symptoms can include severe fatigue, problems with memory and concentration, muscle pain and sleep problems.

Some people are able to continue everyday activities, such as work or education, but the most severely affected can be housebound or bed bound most of the time.

There is no one way of managing ME that helps everyone and the cause of ME is still not known.

In August 2007 NICE guidelines were published to advise doctors on its diagnosis and treatment. There are several options to try and those recommended by the guidelines include cognitive behaviour therapy, graded exercise therapy and lifestyle management, including pacing.

ME is recognised by the World Health Organisation as a neurological illness.

Certain medications can be used to help symptoms such as insomnia or pain. With appropriate treatment most patients improve and some recover.

WHITE
Well an indication of just how contentious this illness is, is the fact that even its name causes heated arguments. One poster on the message board says:

MESSAGE BOARD
There are nigh on no ME medical experts in the United Kingdom. Those who champion themselves as such confuse the conditions of ME and chronic fatigue syndrome. They are not the same and they need separate treatment.

WHITE
Well joining me now are some of those experts. Dr William Weir, a consultant physician in infectious disease; Ondine Upton, who is a trustee from the charity Action for ME and she has ME herself and Professor Peter White from Barts and London Hospital, hereinafter referred to as Professor Peter White, so there's no confusion.

Now we recognise that all our guests come to this table with their own clearly defined view of the condition. Can I ask, if I start by asking you Professor Peter White, why are we still arguing about what this illness should be called, an illness which has been around for at least the last 50 years?

PROFESSOR WHITE
I think the problem with naming the illness is we don't really know what causes it. And in fact I think it's a reflection that the illness probably, and the latest research suggests, is probably a collection of different illnesses come together, in other words it's heterogeneous.

WHITE
And does that cause a lot of problems, the fact that you're putting a lot of things into one basket?

PROFESSOR WHITE
Yes and no, in that it may well be rather like many diseases that can cause your kidneys to fail but kidney failure is one presentation, that some of these treatments that we have available that you've mentioned already may help the illness whatever its original cause.

WHITE
Dr William Weir, what do you prefer to term the illness?

WEIR
I prefer to term the illness ME, although I would qualify that by saying that ME is probably a sub-category of the more broad brush definition of chronic fatigue syndrome.

WHITE
But a lot of people get very cross about the term chronic fatigue syndrome, don't they, and feel that that causes confusion because fatigue doesn't sound anything like as severe enough for what they feel they suffer.

WEIR
I'm very sympathetic to that because just characterising the illness as a cause of fatigue doesn't really do justice to the effects it has on the patient's lifestyle. And this is a very, very severe illness which because fatigue is seen as the only manifestation and there are, in fact, many other manifestations it tends to be trivialised.

WHITE
And Ondine, I mean what do you say you have and where do you stand on this debate?

UPTON
Oh I definitely say I have ME and I think it's very interesting talking about fatigue because one of the best analogies I've heard is that it's like talking - comparing a kitten to a tiger. So you might suffer fatigue that just means you feel a bit tired after a day's work and the kind of fatigue that people with ME are grappling with is more of a tiger variety which is almost impossible for anybody able to imagine who hasn't got it.

WHITE
Okay, that's a helpful analogy. Well we'll talk to you all later but what actually is like to have ME? Zoe Williams from Farringdon in Oxfordshire was diagnosed with ME aged 13 and 17 years later she still suffers from it and Onshall Tornabene [phon.] Parsons from Eastbourne has been recovering from the illness after an initial attack in 2003. Our reporter Sarah Parker went to meet them.

PAT WILLIAMS
I'm Pat Williams and I'm Zoe's mum. This is Zoe playing Memory from Cats, probably just before she got ill when she was 13. One day she was well and the next day she was ill and we thought it was flu or a similar sort of virus. But she never got better, she's never had a day when she's been well since that.

ZOE WILLIAMS
I'm Zoe Williams. It just didn't go away and that was 17 years ago. I've been in bed virtually all the time since then.

BLYTHE
[BUZZER] That was the buzzer yes. I'm Katie Blythe, I am a carer but I work as a personal assistant to Zoe. Zoe will give me a Dictaphone message and list and as Zoe requires things during the shift she will buzz for me but it means there's the minimal communication between us.

ZOE WILLIAMS
Sleep disturbance is a big part of my illness and sometimes I'll feel very groggy all day and that will affect what I can do. I need the dark for resting and then I have a bit of light for when I'm doing things. Katie, please would you open the curtains a bit?

It was very difficult when I was more ill because I had to spend most of my energy on eating and getting to the loo and often that would make me collapse.

PAT WILLIAMS
Zoe has several PAs who come and so she will have cover everyday. I think to see a young person so debilitated was shattering and you want them to do things, you want them to have what you understand as a quality of life.

ZOE WILLIAMS
The worst symptom for me is called a malaise and it feels very painful all over, it's a kind of poisoned feeling throughout my body, as if it's in my veins. Well it affects all aspects of my life, I never went back to school, I haven't been able to do lots of things that most people do, like going to university or going out with friends.

SINGING

PARSONS
My name is Onshall Tornabene Parsons and I'm 36. ME started for me in 2003. I was working full time as a secretary in a very busy office and it was just a normal day - I went to work, I felt very weak and almost as if I was going to pass out. I'd never had any serious health problems, never been in hospital, apart from having my son.

PARSONS JUNIOR
I was eight when she was poorly. She got quite worse. She wasn't able to do a lot of things.

PARSONS
The first six months of the ME was I would say probably the most frightening for me because I was bed bound, I felt a lot of pain, like someone had sand papered your muscles during the night, they were hot, they were angry, tingly - awful symptoms.

ZOE WILLIAMS
When I was first ill I found that the doctors were very unhelpful because they didn't know what to think really and I just felt under pressure to get better all the time. After a while I was sent to a psychiatrist and it was a very unhelpful experience because I just found it confusing. She didn't seem to understand why I couldn't do things. Yeah I had lots of blood tests and various other tests but they just came back normal.

PARSONS
When all the tests came back negative then you're thinking well what's wrong with me. I was getting all sorts of random symptoms - my hair was falling out. I eventually went to see a consultant - and I had to pay for that, it was quite expensive. I just wanted answers really.

ZOE WILLIAMS
For the first couple of years I felt very isolated but I've gradually developed new friendships and found ways of taking part in the world without being able to go out. I have friends around the country with ME and we've started having imagining events - long distance events - where we might have a pretend party. The other week I joined up with friends in imagination under a tree because I had a nice photo of my granny's tree and I had some leaves and beech nuts from this tree so I sent people some leaves and nuts and a nice photo.

PARSONS
This is Amber, she's just turned two. It's not easy having a child when you have something like ME but I am able to do a little bit more now. I teach English at home to German teenagers and obviously working from home that saves me a lot of energy.

Shall we get shoes on and you go out for a little walk?

Yes I think granny needs to get a new puzzle book so she'll go out for a little walk.

NINA
I'm her mother, yes, I'm Nina. She's much better now than she was.

PARSONS
It's not always easy but when I'm working then mum looks after Amber and I can do more but I consistently still get ill.

ZOE WILLIAMS
The future is an unknown really but I try and live in the present and just make the most of what I've got now.

PAT WILLIAMS
She loved playing the piano, yes. And we always said that we'd know when Zoe was getting better because the first thing that would happen would be she'd start playing the piano again and that hasn't happened.

WHITE
The stories of Zoe and Onshall. Ondine Upton how typical are those experiences because this is the same illness, it's called the same thing, but clearly with a huge range in the severity of symptoms?

UPTON
Absolutely and I can identify very closely with both of those stories. I've had it for 18 years and I've had those days of lying on sofas, just spending the day developing your patience - watching raindrops go down the glass pane. And I've also been able to have a child and I'm now able to work part time.

WHITE
You see these differences are part of the reason, it seems to me, why there is so much disagreement between - both between patients and doctors, doctors and doctors, patients and patients - I mean a listener's already suggested to us that Action for ME doesn't represent people with ME because as a charity you're too sympathetic to the CFS definition. I quote that just to illustrate the kind of things that have come into us before we've even started this series.

UPTON
Yes we certainly aim to represent everyone with ME and that is our goal and we're run by people with ME for people with ME. But we've got to work with the doctors to find the solution while also listening to the people who have ME because they know what it's like everyday and it's quite possible that a lot of useful research in the future will come from actually patient surveys and finding that certain treatments have actually helped some people and then doing research into it, rather than starting with the doctors.

WHITE
So Professor White is that part of the problem, you've already acknowledged that this is putting a lot of things in the same basket, that creates difficulties, isn't that why perhaps people are so concerned, for example, and people accuse you for example, of being too wedded to the fact that this is in the mind as opposed to in the body, are you just all trying to deal with too many things under one umbrella?

PROFESSOR WHITE
I think it has been a problem in understanding the cause of this illness. I think what happens with the heterogeneity is that one group of scientists finds one answer, say the immune abnormality in the illness, and another group independently comes along and perhaps are actually studying a different group of patients and therefore don't find the same thing. In terms of the issue about being all in the mind - I am a psychiatrist and I do not believe that ME's all in the mind, I think it's both physical and psychological. And we have to remember that our current understanding of neuroscience has advanced beyond the dualistic understanding this illness is either physical or psychological. Like many, many illnesses if I have something going on in my brain, such as thinking at the moment, that is a physical process happening in my brain and therefore if I have a feeling or a thought it is physical, it's not entirely psychological.

WHITE
Doesn't this make the whole business of diagnosis difficult, I mean both Zoe and Onshall on had problems getting a diagnosis, how difficult is it to get a diagnosis and is it more or less - perhaps I can put this to William Weir - is it more or less a process of elimination?

WEIR
Well first of all to follow on what Professor White said. Cartesian dualism has bedevilled this situation for many years and the medical profession in the past has been the subject of legitimate criticism because we have tended to concentrate on one organ system or another to the exclusion of the rest of the patient. I think that psychiatrists also are - can be legitimately criticised because they tend to concentrate on the mind, although I'm glad to hear Peter White say that - Professor Peter White - say that this illness has physical components. And basically the mind and the body, if one continues to use those philosophical entities, are very closely interactive and when the body goes wrong the body feels ill and the mind feels ill as well. And - but fundamentally the cause of this is an organic disturbance of bodily function and I think that the likeliest common denominator is a disturbance of the immune system and there is recent work which suggests that the immune system is up-regulated and causes symptoms which - which are the fundamental problem with this illness.

WAITE
If I could just interject to say one of the posts on the message board, Peter, says we should be using the Canadian guidelines criteria for ME which is more stringent and encompasses more of the wide ranging and truly debilitating symptoms of ME.

WHITE
So what are these guidelines and why aren't they used? Peter White, perhaps I can put that to you.

PROFESSOR WHITE
Well they're clinical guidelines and they're designed for use in clinical practice. The problem is - and the reason why I don't use them - is they're very complicated to use, will require me to actually do tests on my patients that I don't think are ethically - I should be doing on my patients and I don't find them useful. And if guidelines aren't useful then we don't use them. The problem is what we need is more research to understand what the illness is and that research is starting to take place now, I'm glad to say, and that's how we'll get our advances. And the other thing I'd like to make a point on, in terms of this controversy, there are some reasons for hope, which I think is really important that we share.

WHITE
Can I just ask you, you mentioned tests you don't think it's right for you to do, such as?

PROFESSOR WHITE
Such as the tilt-table test where in the Canadian guidelines the idea is that I would have to exclude the condition called postural hypertension, that is the fall of blood pressure when you stand up. And that is quite a complicated test and I don't think that's justified. I do a clinical test, as I'm sure probably Dr Weir does as well, where I measure the blood pressure when they're lying down and when they're standing, if they symptoms that suggests they get dizzy when they stand up. That is sufficient. And that is why the guidelines aren't useful.

WHITE
So you think they're unethical because they're too demanding?

PROFESSOR WHITE
Yes it's an unpleasant test, why should I put my patients through an unpleasant test that is unnecessary?

WHITE
I want to ask you really about - you mentioned research, money going into this, and I'll put this perhaps to William Weir first of all, because the suggestion is coming to us that there's too much money - a disproportionate amount of money has gone to research on the psychiatric side, not enough on the bio-physical side which you've both agreed is an element in this?

WEIR
Yes I agree entirely, I think that a very large amount of money is currently being applied to research into disturbances of the mind in relation to this disorder and the biomedical causes of this condition have been neglected by the people who hold the purse strings.

WHITE
Why?

WEIR
Well I think because the overall culture hitherto has been very much in favour of the psychiatric definition of this disease, the psychiatric understanding of this disease. And the current PACE's study has really been funded to an extent which I think should be equalled by appropriate biomedical study and it's not the case.

WHITE
Let me put that to Peter White, this is your field - psychiatry - as I said, some people have said your beliefs hold too much sway, has too much money been spent on the psychiatric side?

PROFESSOR WHITE
No I don't think so at all because I don't - wouldn't classify my research as being purely psychiatric in the way that is meant in the conversation so far. The research that I'm doing at the moment, let me just share it with you as a psychiatrist, the PACE trial has been mentioned by Dr Weir and I'm glad to say that Action for ME backs our research and they back it for a very good reason, it's research that's is not just purely psychiatric research, we're going to compare four treatments for this ghastly illness - and we've heard how severely it affects people - we need treatment research and we're going to compare pacing, which the patient charities think is the most helpful treatment ...

WHITE
This is the idea of actually pacing - it's literally what it sounds like.

PROFESSOR WHITE
Exactly, balancing activity versus rest and making sure you live within your limits and we're going to compare that directly with the two treatments that NICE thoroughly support for a very good reason, because the research evidence is there - namely CBT, cognitive behavioural therapy, and graded exercise therapy. But on the etiological side, or the causative side, the two studies that we're about to start at Barts is to look at cytokines - an immune hormone - to see if - sorry, yes an immune hormone - to see if that is elevated in people who undertake exercise and activity and also at the same time, not only looking at the immune system, but reaction with the brain because we know that the immune system affects the brain. And so we're going to look at whether the brain perceives fatigue abnormally in this illness because we suspect it does, so it's both brain and immune system, it's mind and body, it's a way forward for this illness.

WHITE
Ondine Upton, what do you think we ought to be doing, is the money being spent in the right place and where do you want it spent?

UPTON
I think the main issue is that actually far too little money is being spent on research for such an incredibly serious illness. And absolutely I would echo we need more biomedical research but I think we need more research full stop. The cause is not understood, there are no treatments that have been fully investigated. We have a huge jigsaw of which most of the pieces are missing.

WHITE
And why do you think this creates such passion amongst people and is that creating more heat than light sometimes?

UPTON
I think the passion has been created by the fact that people with ME haven't really been understood. It's taken a long time for people to be confident they could go to their GP and get a diagnosis. When I first got ME 18 years ago I was very lucky that the first doctor I saw was actually Dr William Weir. But I've spoken to a lot of people who got ME at that time who had horrific experiences. That is changing. And one of the keys to this illness is early diagnosis. Those who are diagnosed earlier - I mean in three or four or five months after they start the illness - are far more likely to recover much faster. We hear horror stories of people who take a couple of years to get diagnosed and they're the ones who are likely to be ill long term.

WHITE
We have to stop it there but the good thing is that we are going to go on debating this throughout the week. William Weir, Professor Peter White and Ondine Upton, thank you. That's all for today but there will be more on ME on tomorrow's Case Notes on Radio 4 at 9.00 p.m. when Dr Mark Porter will be looking at services for teenagers with ME. And on Wednesday's You and Yours we'll be looking at cognitive behavioural therapy, CBT, as a treatment for ME. All our ME series will be available as separate podcasts, today's discussion will be available this afternoon.

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