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TX: 07.11.07 - ME and CBT

PRESENTER: WINIFRED ROBINSON
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.


ROBINSON
In the past ME was a condition that provoked as much ridicule as sympathy. Some doctors dismissed it as yuppie flu and those who accepted that it was an illness were at a loss over how to treat it. Today NICE - the body that sets the NHS treatment standards - recognises ME is a disease. But groups representing people with ME are divided over the use of cognitive behaviour therapy or CBT to try to treat it. One group is going to take NICE to a judicial review over the inclusion of CBT in its treatment guidelines. Carolyn Atkinson begins her report with Carol Coombes who's had ME for 12 years, last year her condition took a turn for the worse.

COOMBES
I started with very bad muscle pains, spasms of the legs mostly, just felt so ill my body wouldn't work, I couldn't hold a conversation with you because my words would be muddled. I can't walk far, so if I didn't have a motability car I would be housebound. And I have actually been walking with a stick and at my worst point was pushed in a wheelchair.

ATKINSON
Carol is one of 240,000 people in the UK with ME. It's a common long term condition with no cure and no proven cause, although some researchers think it could be triggered by viruses. Up until three months ago there was no official guidance on how to treat people like Carol. Then in August the National Institute for Clinical Excellence - NICE - issued guidelines on what to do and they include the suggestion that cognitive behavioural therapy should be offered to all people with mild to moderate ME. Cognitive Behavioural Therapy or CBT was developed in the 1950s and used for conditions like anxiety. It's defined by the Royal College of Psychiatrists as helping people change how they think, that's the cognitive bit, and what they do, that's the behaviour bit. But its use for ME came in the late '80s. CBT expert, Professor Trudy Chalder from King's College London was part of a British team at the National Hospital for Neurology who came up with the idea.

CHALDER
When we started seeing people about 20 years ago now it must have been with chronic fatigue syndrome we were unclear at that stage whether anything would be helpful in terms of improving the quality of people's lives. But we've been also seeing people with chronic pain and the treatments for chronic pain have been quite well developed and well researched and it seemed reasonable to use similar approaches to people with chronic fatigue syndrome.

ATKINSON
For the people who think they have a physical illness when they have ME and yet they perceive CBT as a psychiatric approach, how can a psychiatric approach have an effect on a physical illness?

CHALDER
Well I think the first thing is that I don't think CBT - cognitive behavioural therapy - is a psychiatric approach. I think it's a pragmatic collaborative approach where one is hoping to improve people's symptom management and thereby help reduce the level of symptom severity.

ATKINSON
But many people with ME consider it purely a physical illness, lots of you have been e-mailing You and Yours and writing on the Radio 4 message boards angry at the role of psychiatrists and pointing to the fact that the World Health Organisation defines ME as a neurological condition like epilepsy or Multiple Sclerosis. And this means, despite evidence that CBT helps reduce the symptoms in people with other physical conditions like diabetes, MS and even cancer, there is often a resistance by some patients to treat their physical condition with what they consider a psychiatric approach.

COOMBES
When my GP mentioned it I said I'm not happy about this, I'm ill, I'm not going there, I'm not going to be brainwashed. So he asked me would I just go the once and see what I thought.

ATKINSON
So you went in very sceptical.

COOMBES
Very.

ATKINSON
And what is your view now?

COOMBES
Please let people with this illness go on a course like that. I hope they can get there sooner than I did because I was in desperation and a total wreck.

ATKINSON
You were in a wheelchair, paralysed down one side, how can CBT work for something like that?

COOMBES
Being on that course you talk and discuss many things, things you can't do, feeling guilty, frustration in your body and I think it sort of gets you that you're not so frustrated with yourself, you're not so depressed, so maybe not trying to fight the frustration, not trying to fight depression, you're not trying to fight so many other things that maybe with rest and the planning and pacing of your day I would say that is something to do with how I have improved.

ATKINSON
Carol's enthusiasm and conviction that it saved her from a complete breakdown is not shared by all. Dr Charles Shepherd, the medical director of the ME Association, who's had ME himself, is not convinced of its efficacy for people with ME, even though there are now 13 specialist centres across England.

SHEPHERD
I think there's a certain degree of empire building going on here amongst the psychiatric and psychological professions. CBT seems to be sort of moving into all kinds of illnesses.

ATKINSON
But it is used for physical things.

SHEPHERD
It is used for physical things and this is perhaps the argument that NICE would make - that it's used sometimes with the management of cancer and serious physical illnesses like Multiple Sclerosis. But I think this argument is disingenuous, it's not a primary form of treatment there as is being recommended for people with ME CFS and if you went along to a cancer specialist and were just offered CBT as the primary form of treatment you'd be quite horrified, in fact you'd probably think you were being treated with medical negligence.

CARR
It was sold to me as something the CBT would make a big difference, it would change my outlook and it was what they were offering at that time as a cure for ME.

ATKINSON
That's Natalie Carr, a 31 year old teacher from Oxford, who's had ME since getting glandular fever when she was 17. For her it was all talk and no action.

CARR
It was sold more as a cure than as a coping strategy I'd say.

ATKINSON
And in practical terms how did you find it?

CARR
I found it useful to talk about my ME but it certainly didn't improve things when I was coming for a relapse and so on, I tried all the strategies that the CBT had suggested but it didn't change the intensity of the relapse or the length of time I was ill for. And as time went on it really reinforced with me that it was a physical illness and certainly mind over matter was only going to have a very limited effect.

ATKINSON
And Natalie's sense of disappointment is increasingly common, according to Dr. Charles Shepherd from the ME Association. The new NICE guidelines, which recommend CBT for mild to moderate ME, do stop short of what he calls coercing people into having CBT in order to qualify for health insurance or benefit claims but he says the NICE guidelines offer false hope.

SHEPHERD
NICE is saying that everyone who falls into the mild or moderate category of this illness should be offered CBT or graded exercise. But for NICE to be saying 200,000 people, everyone with mild to moderate ME needs a course of 12-16 treatments of CBT, which costs round about £100 per treatment, that's a £1,000 for a course, the NICE guideline recommendation, even if it would work, is just totally impractical from the financial and manpower sense.

ATKINSON
And he cites evidence by patient groups included in a report by the Chief Medical Officer in 2002 which claims that as few as 7% of people with ME get any benefit from CBT, 67% show no change and 26% actually get worse. Many though do want to try it and their biggest problem is getting access to a therapist, particularly in Wales, Scotland and Northern Ireland. In Scotland a national strategy is now being drawn up but there's only one nurse specialist for ME. Wales has no ME treatment centres, each local health board decides how to treat people on a case by case basis. And in Northern Ireland there is one CFS ME clinic in Belfast. But where demand outstrips supply some primary care trusts who do consider CBT as a useful tool have funded group CBT sessions.

ACTUALITY CBT SESSION
Thanks for our meeting this afternoon. What I'd like to do is to think about a time when - maybe recently - when you've had a flare up of your symptoms...

ATKINSON
At Bristol's Frenchay Hospital physiotherapist Crispin Barker holds a weekly group.

ACTUALITY CBT SESSION
Can you tell us a little bit about what happened two weeks ago that led to this situation?

When I came to the ME meeting two weeks ago I did feel very tired afterwards and that same evening I had three phone calls that were quite stressful...

ATKINSON
Professor Trudy Chalder says her team at King's College in London is also offering CBT in people's homes, by phone and on some occasions for severely affected people as an inpatient and recalls the case of one woman who'd been bedridden.

CHALDER
This particular person had been in bed for several years and in fact hadn't really sat up for several years. And in fact we just very gradually encouraged her to sit up several times a day to start with, so it was very much focusing on the behaviour changes as opposed to focusing on what she was thinking. And gradually her strength improved and she gathered some confidence, I suppose, and in fact I was there seeing her three times a week and gradually over a period of months she got back to normal and eventually she got back to work.

ATKINSON
In fact she says the three key CBT trials that have been carried out show 50-70% of people improve, that's defined as having increased physical functioning, i.e. they can do more and less fatigue. Professor Trudy Chalder says a five year follow up in two of those three trials showed 25% of people recovered completely and 68% were much or very much improved. That evidence does not convince Dr Charles Shepherd, who's calling for an end to what he calls the blanket approach to CBT in the NICE guidelines.

SHEPHERD
I think they've gone down completely the wrong route here, their guidelines are impractical. What people with ME want is a multidisciplinary service which is physician led, based in hospitals, that can provide advice on diagnosis and management, advice on pain relief, sleep disturbance - other key aspects of the illness - and then help with the other key points that come into ME - education, work, benefits and whatever.

ATKINSON
Would you want to see CBT removed from the NICE guidelines?

SHEPHERD
We would like to see CBT removed from the NICE guidelines as far as a blanket recommendation of one size fits all recommendation for everyone with mild to moderate ME - that is not appropriate.

ATKINSON
But Professor Richard Baker from Leicester University, who helped to write the NICE guidelines, says they're a big step forward and should stand.

BAKER
For the first time the NHS now has clear guidance on identifying people with CFS ME, of supporting them, of offering them therapies that can help and that is a significant step forward - a big step forward from what was happening just a year or two ago.

ATKINSON
And talk us through, if you would, how you arrived at the decision to include CBT in your guidelines.

BAKER
This falls out of a process of looking at all the research that is relevant on therapies for CFS ME and CBT clearly stands out as one of the few where there's a whole series of studies that provide consistent evidence. And when you've got that degree of evidence we are duty bound to let patients know that that is the evidence and make that service available to them.

COOMBES
If more people get on this course sooner rather than later maybe they won't be ill for 12 years, maybe if I had got put on this course in 2000 maybe I wouldn't have got as bad as I have and I now understand that I can improve but I will never - because I've had it too long - I will never go back to the life I had before. Everybody's different, I'm really sorry for the people it hasn't helped, there are many, many people out there that it will help and it can help.

CARR
It's not a cure, it's not going to make you significantly better, it may help you understand things a bit better and manage a bit better but I don't think it's a first treatment of choice to cure ME. It adds weight to some people's view that it's all in the mind, which clearly it isn't and in some ways it would be lovely if it was all in the mind because it would be much easier to fix and move on.

ROBINSON
Natalie Carr ending that report by Carolyn Atkinson.

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