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BRITISH BROADCASTING CORPORATION
RADIO SCIENCE UNIT
CASE NOTES
Programme 2. - Multiple Sclerosis
RADIO 4
TUESDAY 15/05/07 2100-2130
PRESENTER:
MARK PORTER
REPORTER: CAROLINE SWINBURNE
CONTRIBUTORS:
ALAN THOMPSON
NEIL SCOLDING
JOHN ZAJICEK
PRODUCER:
HELENA SELBY
NOT CHECKED AS BROADCASTbr />
PORTER
Hello. In today's programme I'll be finding out about the latest developments in the management of multiple sclerosis - better known as MS.
In the absence of a definitive diagnostic test, how can doctors be sure someone has the condition before raising the possibility with an anxious patient?
And I'll be learning more about so called "horizon drugs" - potentially exciting new treatments, including drugs derived from cannabis - currently in the pipeline.
But first, let's start with the basics.
CLIP
I don't think people understand about MS. I think they can get it confused with Parkinson's or other neurological diseases and I think it's just they don't know what to say. I have a friend who said I've heard you've got M&S and I said will if I had I would take it back and change it. If only.
PORTER
If only indeed! My guest today is Professor Alan Thompson, he's Clinical Director, and Director of Research and Development, at the National Hospital for Neurology and Neurosurgery in London.
Alan, what is MS, what's actually happening?
THOMPSON
Well MS is a condition which affects the central nervous system - that's the first point, so it affects the brain and spinal cord. And essentially what happens is that cells attack the central nervous system and they attack in particular the lining of the nerve fibres, the so-called myelin sheath. Now myelin sheath is very important both to protect the nerve fibres and to be used as - to conduct.
PORTER
So put simply it's like a sort of insulating layer on a wire, would that be fair to say?
THOMPSON
Yeah it's described as an insulating ... and it's really important to get messages from the brain down into the arms and legs. So this is the area that gets damaged in MS, the messages are slowed and sometimes stop altogether.
PORTER
But how common is it?
THOMPSON
It's quite a common condition, I mean of course it varies and it varies worldwide and indeed it varies throughout the United Kingdom but about one in a thousand, much higher incidence in Scotland than in London, but overall about one in a thousand. So perhaps in the UK we say 87,000 people affected, probably more than that, probably more than a hundred thousand affected.
PORTER
Now who gets it - and why and at what stage of their life, is this the condition - I mean I always thought of it as a condition that affects people in their 20s, 30s and 40s?
THOMPSON
Absolutely, it is a condition of young people, mean age of about 30, but actually can affect anybody from early childhood right up into their 70s. And as you probably are aware it affects women much more than men, so the ratio in women in men is two to one.
PORTER
And what's the latest theory on what's actually causing this?
THOMPSON
Well the theory is the same probably as it has been for the last number of decades. It is complicated, there is certainly something in the environment which is responsible for getting this condition but nobody quite knows what it is, a whole range of viruses
have been looked at over the years. And also within the person there is some genetic component, a small and complicated one, this is not a hereditary condition but there is a minor genetic component. So it's this combination of something in the environment and something within the person.
PORTER
So if something predisposes you and then you meet the trigger - and you say viruses, I mean when would we be meeting these - in childhood or as an adult?
THOMPSON
I mean I think probably in teens is the age that people think that you get affected, though of course the condition itself may not appear until your 20s or 30s.
PORTER
I remember being taught about quite an interesting geographical spread - the farther you get away from the Equator you get a difference, what's happening there?
THOMPSON
Well this maybe because whatever the vector, whatever the agent in the environment is, it's more common in the temperate zones. And even if you look at the UK there's a gradient through the country and the same in Australia. So if you look at Australia the closer to the Equator the less this condition. But exactly what that means and exactly what it's governing nobody knows.
PORTER
And yet people who come from those areas, who move to say - if you come from the Sahara and you move to London eventually do you pick up the same level of risk?
THOMPSON
Yes, yes, yes you do. Geoffrey Dean, one of the great researchers in this, demonstrated if people came from South Africa to the UK, if they moved before their teens, then they kept the low incidence of the country they came from, if they moved after their teens they picked up the higher incidence. And certainly if you - there have been studies looking at people in London and the UK and over years you take on the incidence of the country you're living in.
PORTER
Well in Sheringham in Norfolk a group of people with MS come together every Monday to meet at the Life and MS day centre where they can access treatments like physiotherapy. And - perhaps more importantly - meet and share symptoms and experiences. Caroline Swinburne joined them for the day.
ACTUALITY - INTRODUCTION
Good morning everybody. Right we've got a busy day today. First of all let's welcome the visitors that we have here today.
ROGER
My name's Roger and I was diagnosed with MS last year. For the last 10 years my right leg's been getting - it's been feeling like I've had lead boots on it and it's been - progressively getting worse. Originally they thought it was osteoarthritis and various other things but it finally turned out to be MS in the end. It's very surprising because it turns out I've probably had it for over 30 years without knowing it.
MAUREEN
My name's Maureen and I was diagnosed with MS in 1992. My MS is secondary progressive, which means it niggles away at me all the time but you do have peaks and troughs getting worse. That's the way it's been - slowly. I'm now in wheelchair but only for part of the time. I lost the sight in one eye some years ago and that eventually came back after 18 months, although not perfect and this is why I'm saying you have this niggling away at you, then you get this - something that will happen - you get over that but it doesn't leave everything perfectly as it was before.
JOANNE
My name's Joanne and I was diagnosed in June 1984. My symptoms now is I have - I don't walk, I've got permanent pins and needles in my hand, I've got no ability to write or anything like that.
ROGER
I was referred to a neurologist and all he said was it will get worse but he couldn't say at what speed it'll get worse, whether it'll be five years, 10 years, 20 years before I'm in a wheelchair, you can't really get that accurate with it.
PORTER
Alan, I'll come back to that uncertain prognosis in a moment but first of all what tends to be the first tell tale signs of trouble?
THOMPSON
Well there are a range of symptoms. One common one is painful loss of vision or so called optic neuritis. Another would be loss of power or sensory disturbance of tingling, pins and needles. Sometimes what are common symptoms which are easy to get concerned about but I think pins and needles might affect an entire leg or go right up to the middle of your abdomen or something like that, so quite marked. They're the main ones. Loss of balance, various other - occasionally pain.
PORTER
And the norm would be you would then recover from this?
THOMPSON
Yes.
PORTER
And may not think anything of it at the time but at a later date you look back and the story starts to ...
THOMPSON
Yeah often when people come with a symptom and you sit down and chat to them you find that something has happened weeks, months, years before and because it settled down they haven't gone to see anybody.
PORTER
That wonderful instrument - the retrospector scope. How does it progress, what happens thereafter - you've had this first bout?
THOMPSON
Well the vast majority of people, maybe about 85%, have attacks which go away and over - after a period of years they tend to notice a rather gradual deterioration or progression and they move from what they call relapsing, remitting, MS to secondary progressive MS. There is a small group of patients that never have attacks but just get very, very slowly worse in the beginning and they're often a slightly older group and they have what we call primary progressive MS.
PORTER
And what about accompanying symptoms, we think of this as a wiring problem, as a neurological problem, but people often have quite vague symptoms that are difficult to put - I mean things like fatigue and tiredness?
THOMPSON
There are a lot of so-called hidden symptoms in MS and I think fatigue is one of the most disabling and of course it's impossible to see and sometimes not very well tolerated, either by the person or by those around them. Pain is another symptom, you can get all sorts of pain, often very severe, bladder and bowel disturbance, memory disturbance, low mood - these are all very disabling symptoms which sometimes we forget about.
PORTER
We've talked about the fact that you might have one of these attacks that's easily missed, a second and third comes along, things are starting to get worse, people put two and two together, how do we confirm the diagnosis?
THOMPSON
Well of course there's no absolute confirmation during life but the history and examination and the expertise of the neurologist are quite important, perhaps one of the few times the neurologist is useful and there you're clear that attacks have taken place, imaging with what's called magnetic resonance imaging, where you can actually look at the brain and look at the brain water allows you to pick up areas of so-called inflammation, so where there actually has ...
PORTER
Oh you can actually see the inflammation that's going on?
THOMPSON
Yes, so you can see the areas that are affected by the inflammation, even in the brain or sometimes if necessary in the spinal cord. And that together with the history and examination will allow you to be as sure as possible about the diagnosis and of course you'd want to be really confident before you'd even mention it.
PORTER
And Alan what do you tell your patients about what's likely to happen to them in the future?
THOMPSON
Well MS is an unpredictable condition and I have to reinforce that but I think I also need to say that over 10, 15 or 20 years about two thirds of patients will develop disabilities which will affect their mobility. And the point is we can't really identify who's going to end up in this ...
PORTER
But in terms of life expectancy, does it affect their life expectancy?
THOMPSON
Not really, I mean it's much more about disability and with proper management and care it has very little effect on life expectancy.
PORTER
I want to move on to the latest drugs used to treat MS in a moment, but first back to the Life and MS group in Norfolk to find out about some of the other approaches they use.
HIND
I'm Linda Hind, I'm a neurological specialist nurse. Symptoms can be managed, not looking at pharmaceutical management, we have physio and most people with MS feel that they benefit quite considerably from physiotherapy, occupational therapists play a huge part in letting people deal with their fatigue levels and actually managing their fatigue and their energy levels. There's lots of complementary and alternative ways that people can deal with things. And everybody has their own way of doing it, you know, every patient that I see has a different way that they deal with their different symptoms. Bladder problems - they can be dealt with. I do a lot of referring to other departments - to the neurology department, to the continence clinics, to OT, to physio speech and language therapy if people have problems with speech. Things like pain, which is quite a big part of MS, that can be dealt with in different ways and there's a lot of pharmaceutical help.
ACTUALITY
Right sit straight in your chair. Feet flat on the floor or on the [indistinct word] of your wheelchair and take your [indistinct word] in your right hand.
NOVELL
I'm Sarah Novell, I'm the physiotherapist from [indistinct word] Hospital and I come to the centre here once a fortnight. I think you have to try and be as honest as you can, it's no good saying to somebody do these exercises and you'll get better because that isn't true. Equally it's no good saying to somebody whatever you do you want make any difference because that's not necessarily true either. You have to try and make people be aware that every case is different and it's important I think from our point of view as professionals to try and teach people to do the best they can for themselves and to give them a little bit of optimism and positive outlook and help them feel that they're doing as much as they can possibly can to limit the course of the disease. We do chair based exercises because the patients have a range of different abilities, some of them are able to walk and some are completely chair bound and have to use electric wheelchairs. I try to correct their posture to start with, so they're sitting straight in the chair, which is important whether you're chair bound or ambulant. And we do just general exercises for head and neck, shoulders, legs, sitting up straight and trying to throw and catch things so that they're using their coordination.
JOANNE
I've been here from the start of this, so just over two years ago, and it's nice to meet other people and just have a chat and you do learn things from other people - their symptoms, their answers. And [indistinct word] accept one another whatever stage of physical state you're in because you're all in the same boat basically.
ROGER
Coming here has helped me probably more than anything else because I've met people who are obviously are a lot worse than me but people with MS they've taught me how to cope with it, so it's been a brilliant supportive thing for me, more than the doctor really in a way.
PORTER
Caroline Swinburne talking to the Life and MS Group in Norfolk.
You are listening to Case Notes. I'm Dr Mark Porter and I am discussing multiple sclerosis with my guest, neurologist Professor Alan Thompson.
Alan, when we think of treating MS, it's often drugs that spring to mind but measures like physiotherapy, that we heard of there, which aim to minimise the impact of the condition, rather than treat the disease process itself, are very important.
THOMPSON
They're absolutely crucial and I think that they complement each other and lifestyle changes, physio and medication are all useful treatment of symptoms, essential, so there's a package.
PORTER
So attached to a department like yours you would have physiotherapists and occupational therapists and that?
THOMPSON
Absolutely we have - that specialise in MS - nurses, physios, OT, because you need that multidisciplinary team.
PORTER
Well let's move on now to the drug based therapies - of which there are a number. Neil Scolding is Professor of Clinical Neuroscienes at the University of Bristol.
SCOLDING
I think there are three groups of drugs. There's steroids by themselves, as one group, there are what we call the current disease modifying treatments like interferon and Copaxone. And then if you like there are other sort of horizon drugs - things that are just around the corner. And I think those three categories cover many of the treatments.
PORTER
Well let's start with the first category - steroids - how are we using them and in whom?
SCOLDING
Yeah, they have a very clear role and there's been a lot of research, we know really quite well how to use them. And it's in patients with relapse and it is at the time of relapse and what they do is to help shorten relapse and they help to accelerate the rate of recovery from relapse. But sadly what they don't do is to influence the overall degree of recovery from relapse, so if a patient is, if you like, destined only to get 80% better after a relapse, which can happen, then it will be 80% whether they have steroids or not but they'll get there a bit quicker with steroids.
PORTER
And do we know how they're working, they're presumably - they're very potent anti-inflammatory agents?
SCOLDING
Exactly that but more than that - I mean that's roughly where we've got stuck. Precisely how they help in relapse, we know they damp down inflammation, they reduce the amount of swelling, but these very general sort of vague terms are as much as we know really about steroids in MS.
PORTER
Steroids are something we can use when faced with an acute problem but they're not something you can have patients on regularly, what can we do to try and prevent the number of relapses in the first place and keep the patients well?
SCOLDING
Exactly, so all steroids will do are to help the individual relapse, they don't influence the chances of having another relapse in the future. And so we need other types of treatment and we now know that drugs like the interferons and glactiramer have a certain effect in helping to reduce the frequency of relapses.
PORTER
And these are working how?
SCOLDING
Well again they work on the immune system, there are three different types of interferon but they all have roughly the same effect and in fact probably an identical effect biologically and on the immune system. Copolymer or Copaxone or glactiramer, different names, works in a rather different way but has the same overall effect in reducing the number of attacks. Perhaps not hugely dramatically but nonetheless it is a reduction.
PORTER
Can we quantify the average sort of response, what would you regard as a good response?
SCOLDING
Well if you look across the whole population of patients there isn't such a thing as an average patient but if you look at a thousand patients over a year then you'd see about a thousand relapses. So the broad average would be one relapse per year. If they're on treatment the broad average might be point six or point seven, it's that sort of reduction. So another way of looking at it would be to say that the average patient over three years might have three relapses, if they're on treatment they might have two relapses. Which is not a huge difference but it's better than nothing. The effect of these drugs is to reduce the frequency of relapses and if you like the consequence of that is that patients who don't have relapses are unlikely to benefit from this drug. So it's tending to be used much more in patients with early disease - early in the course of the disease - where they have a number of relapses.
PORTER
You mentioned horizon drugs, that always sounds exciting, the drugs that are just coming out or in the pipeline, any difference there, any to get excited about there?
SCOLDING
Well I think there is. The, if you like, one of the disappointing things to emerge about interferons is that the reduction in the number of relapses doesn't seem to have translated into a reduction in progressive disability in those patients who get progressive disability, which is quite a significant proportion. We'd hoped and it seems intuitive that if you help reduce relapses you'll reduce progression but that doesn't seem to have been the case and that's why there is still a lot of research going on to look at new agents and some of these are looking very promising indeed. Many of them are still concentrating on the immune system and I think it's probably fair to say most of them are still concentrating on the immune system But whereas you see this one third reduction in relapse rate with the interferons and glactiramer the early reports are suggesting that some of the newer agents will cause round about two thirds reduction or perhaps even higher - 90 or 95% - reduction with some of the agents. And if you cut relapses out to that extent then maybe there will be a more genuine effect on progressive disability.
PORTER
Professor Neil Scolding talking to me earlier.
Well another therapy that could be categorised under the heading of "horizon drugs" is the use of cannabinoids - the active ingredients in cannabis. Use - and abuse - of the drug by people with MS has attracted a lot of publicity in recent years, but hype aside, can it really help? And if so - how? John Zajicek is Professor of Clinical Neurosciences at the Peninsula Medical School.
ZAJICEK
Well cannabis has been used as a medicine for many thousands of years actually and famously Queen Victoria used to take it for relief of her pains. And then in the beginning of the 20th Century it became less well used and because the treatments for multiple sclerosis weren't particularly good, particularly symptomatic treatments weren't very good, people that were smoking cannabis for recreational purposes reported that some of their symptoms relating from multiple sclerosis were actually improved when they smoked cannabis or ate it as cookies. So there was lots of anecdotal evidence out there.
PORTER
So they were noticing that there'd been some improvement, doctors took heed, a trial was done, what happened then?
ZAJICEK
Well we with the Medical Research Council's support conducted a trial called the CAMS study, a cannabinoids in multiple sclerosis study, where we had 667 patients from 33 centres around the UK. And we looked to see if there was a change in symptoms, particularly over the first 15 weeks of study, and then gave people the option of continuing to take the medication and we didn't know what they were taking at that time for up to a year.
FRIEND
My name's Lesley Friend, I'm 60. I applied for the CAMS trial because I was intrigued to find out more about it. I was on the 15 week trial. My legs just felt so much lighter, my legs now and always feel like tree trunks, they are solid, they are - it's an effort to drag them around. That's where the fatigue sets in because everything is such hard work. And while I was on that trial it was miraculous I felt because my legs just worked and I was doing work in the garden that I just couldn't believe I was doing it. And I found on the cannabis that the bladder improves tremendously, you know you suddenly just don't want to go so often.
ZAJICEK
Now the results showed that when we tried to look for an objective effect on muscle stiffness, which we were able to measure to some extent, we didn't find an effect over the first 15 weeks of the study. We did find some intriguing effects, for example, in speed of walking in people that could walk and a lot of people that took part in CAMS were very, very disabled and some were very bed bound, so that it was only about half the people that could walk, so there was an effect, particularly with THC - the major active ingredient in cannabis - in walking speed. But from the patient perspective there was huge benefit in certain particular symptoms - there was benefit in symptoms of muscle stiffness, in pain and in sleep quality. But the really interesting evidence came from when we looked at people that continued on the medication for up to a year and this coincided with evidence from different laboratories around the world to suggest that certain cannabinoids might actually help to slow down the cell death that we think occurs in multiple sclerosis. And when we looked at people that continued on medication for up to 12 months we found that there were effects over the longer term that we didn't see in the short term. So the objective effect of muscle stiffness was present over the longer term, which we didn't find over 15 weeks. And obviously we continued to see effects on the symptoms from the patient perspective but we also started to see effects on some of the scales we used to measure disability.
PORTER
Which suggests to you what?
ZAJICEK
Well that is potentially very exciting - if this effect is real and we have to take it with a pinch of salt because the study wasn't designed to look for a long term effect, if it's real then it might be the first evidence of a long term effect in progressive disease and we don't have any treatments that slow down progression in the absence of relapses at the moment.
PORTER
So just to clarify - this might not be a drug that can help just with symptoms but actually one that affects the progression of the disease over the long period - slows it down if you like?
ZAJICEK
That's what we're hoping. We're testing the theory that THC might help to slow down progression in multiple sclerosis with our new study which we're calling CUPID, which stands for Cannabinoid Use in Progressive Inflammatory Brain Disease. And that study's underway at the moment across the UK and we're looking for 500 people with progressive disease that are still walking.
PORTER
And you're currently recruiting for that study?
ZAJICEK
Absolutely yeah.
PORTER
Is there a pathway that would explain how cannabis might be a disease modifying drug, I mean as a neuroscientist looking at the brain is there some obvious explanation?
ZAJICEK
Well this is a really exciting area of science at the moment because it turns out that we've got lots of cannabis receptors within our brains and lots of, what we call, endogenous cannabinoids, that means cannabis type chemicals that our brain produces all the time. And we don't really know what they're there for. But there is evidence from the laboratory to suggest that this particular group of drugs may help to prevent the death of nerve cells, may help to prevent the destruction of the myelin and they also help to restore myelin in repairing nervous systems in multiple sclerosis.
PORTER
And assuming the results are promising it's going to be another probably four or five years before we see any useful clinical agent would you think, at least?
ZAJICEK
I think it will be shorter than that because I think that the trials currently underway looking at symptomatic benefit will be positive and I would anticipate that cannabinoid drugs would probably be licensed within the next couple of years.
PORTER
Professor John Zajicek.
Alan Thompson do you share his enthusiasm?
THOMPSON
Well I share his view that we need to be looking at neuro-protection and at repair as a method of treating MS and I do also share his enthusiasm for the cannabinoids, they're a very exciting group of agents. Whether or not THC is the one that's going to give us the answer or whether it'll be other members of that family remains to be seen.
PORTER
In the meantime, while we wait for data from trials like CUPID, what do you tell your patients who are - how shall we put it - self medicating, smoking cannabis or taking it in cookies?
THOMPSON
Well of course most of them don't tell me but ...
PORTER
It's common isn't it.
THOMPSON
It is common and I think the survey suggests it's between - something between 50 and 70% of people actually try occasionally. There's no doubt that some people find benefit and others don't and there are quite extremes. If people are - what people do in the privacy of their own home is their own business, I don't interfere, as long as it's not making them unwell.
PORTER
Well let's talk about the access to the latest treatment, the so-called horizon drugs and indeed interferon even, ones that are already out there and they're very expensive and access on the NHS is difficult. Do you think people out there or here in the UK with MS are suffering unnecessarily because of what the NHS will and won't pay for ?
THOMPSON
I think you mustn't underestimate how important the emergence of these drugs has been and it's huge, MS is no longer an untreatable condition. The horizon drugs are very exciting and one - [drug name] - is under consideration by NICE which would be very useful in aggressive MS. Are people with MS disadvantaged? I think there are strict limitations on access to these drugs and there are also geographical limitations. I suspect more people would benefit from them than currently can access them.
PORTER
Is this a problem because they're not that effective in terms of reducing the relapse rates by 30% at the moment the existing ones, maybe by 70-80% some of the newer ones, and people just don't deem that to be cost effective?
THOMPSON
Cost effectiveness is extremely difficult, I mean it's particularly hard to capture all the impact of another chronic condition like MS, so one is always slightly sceptical of these studies. But they have a real effect and 30% might be the mean, some patients notice a much greater improvement in their relapses. These are real effects and I think patients with relapsed or remitting MS should have access if they're having frequent attacks.
PORTER
Last but not least: there's lots of alternative approaches to MS, particularly on the internet, do any of them hold any credence with you?
THOMPSON
That covers a multitude and of course we know that things like acupuncture or yoga may have quite useful effects for patients. I draw the line at things like bee venom and snake venom or whatever, you need evidence before you would take an intervention like that. But there are plenty of very sensible so-called alternative treatments that are of value.
PORTER
We must leave it there. Professor Alan Thompson thank you very much.
If you want any more details on what we have discussed today - or are interested in joining that CUPID trial - then do check out the links on our website bbc.co.uk/radio4. Or you can call the action line on 0800 044 044 if you don't have access to the internet.
Next week's programme is all about the nose. From why people who have lost their sense of smell can't tell an apple from an onion to how sneezing can worsen the cough and wheeze caused by asthma.
ENDS
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