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TX: 12.11.07 - ME Research

PRESENTER: PETER WHITE
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
Some 240,000 people in the UK have ME or chronic fatigue syndrome and it’s a puzzling condition as we have been discovering over the past week. The symptoms vary from person to person and severity will affect individuals differently. Currently we don’t know what causes ME and there is no single treatment that works for everyone. Work is being done around the country on this condition. For instance, Professor Gill Belcher at the University of Dundee is looking at its vascular aspects of ME/CFS and Dr Norma Paul at the University of Glasgow is investigating the neurological aspects of pain. Well, Caroline Atkinson has been to meet some of those who are currently researching ME and she started by talking to Professor Trudy Chalder from Kings College London which is receiving funding from the Medical Research Council.

CHALDER
The trial is called the PACE trial and we are aiming to test the efficacy of 4 different types of treatment, cognitive behaviour therapy, graded exercise therapy, adaptive pacing therapy and specialist medical care.

ATKINSON
Now, on the face of it there are similarities between those four types of approach. What are the similarities that you can almost agree upon before you start?

CHALDER
They all involve some element of activity management. How people engage in activity which is sometimes very difficult given the severity of their symptoms.

ATKINSON
With this trial what are you actually trying to achieve what are you trying to find out?

CHALDER
We are trying to find out whether any of the treatments are effective and in what way they are effective as we don’t really know that much about how these treatments work. So we will be able to look at that in more detail. There is some efficacy for CBT and for graded exercise therapy but we also want to compare the efficacy of those two treatments in a much larger trial in which we will have better confidence and compare them with adaptive pacing therapy which hasn’t been tested before and specialist medical care as delivered as we are doing it in this trial. We will also be looking at cost effectiveness, we will also be looking at whether any of the treatments cause any harm as that has been a concern of some of the patient groups specifically about how CBT and graded exercise therapy were carried out and whether it does in fact make some patients worse.

ATKINSON
Now what time scale are you on here and how many people are actually involved in this trial?

CHALDER
600 patients are going to be randomized to the 4 groups and that is taking 5 years to conduct.

ATKINSON
So at the end of this you are presumably hoping to have an answer.

CHALDER
At this stage we are curious as to what the answer is going to be and in my experience one never knows.

KERR
I am Dr Jonathan Kerr based at St Georges University in London in Tooting, South London. We are looking at the gene activity levels of thousands of human genes in chronic fatigue syndrome as compared to normal blood donors. We have found in total there are 88 human genes which occur at abnormal levels in chronic fatigue syndrome

ATKINSON
That in itself is a much higher figure than anyone has come up with before, including trials that you have done before, but you also made a discovery about variations within the people who had ME. You found sub groups didn’t you?

KERR
We were very excited to discover that there were 7 such clusters in our CFS group and when we looked at the symptoms of these and the clinical scores there were marked differences between sub types.

ATKINSON
So for the first time you’re beginning to show that not only is there a significant difference between people with ME and the normal population you are also showing significant differences in the way people present with ME.

KERR
Yes absolutely. For example some of the sub types had very poor mental health, others had a large degree of bodily pain, others a very small one, others a very good physical function, others very poor. Some people had gastro intestinal symptoms where others did not. They had more prominent neurological symptoms, sore throat, headache etc etc. Now that there are 88 genes that are important and reproducibly abnormal in chronic fatigue syndrome we really urgently need funding to pursue this and connect this up with the other biological abnormalities that have been found in CFS like the neurological abnormalities, like the abnormal levels of neuron transmitters in the brain, abnormal levels of d lymphocites, t lymphocites etc etc so that we can understand the sub types and develop better management strategies for these poor people who have been suffering in silence far too long.

PHOEBE
My name is Derek Phoebe. I am the Product Co ordinator for the National ME Observatory which is funded by the big lottery fund and we are going to do research looking at epidemiology which is the distribution and causes of ME in the population and also some qualitative social research which is trying to get a handle on exactly what it is like to have ME and how unpleasant it is. The problem with current epidemiological data available to us, about the number of people in this country who have ME, is that these are really largely guesses and they are guesses based on work done in other populations particularly in the United States and other places as well. We think this information will be very useful first of all because it doesn’t exist at present. It is very important that we can for eg get more funding to support research into all aspects of this illness particularly bio medical research unless we can persuade funders and governments and so on this is really serious and it’s a big problem then we don’t have much hope of getting that sort of funding.

WHITE
And we heard there from Dr Derek Phoebe and before that from Dr Jonathan Kerr and Professor Trudy Chalder. Now in the course of the past week we have received many, many emails and texts calling for more money to be made available for research so today we want to examine how decisions are made in awarding funding and where the research money is currently going and perhaps where it should go. Joining me first of all is Dr Abhjit Chaudhuri who is Consultant Neurologist at Queens Hospital, Romford and we are also joined on the line by Dr Esther Crawley who is Consultant Paediatrician at the Royal National Hospital for Rheumatic Diseases and also Esther is in the Chair of the 11 specialist centres for ME in England which has been set up. Dr Chaudhuri if I could come to you first of all. Just tell me about your research and what area of this you have been looking at and its significance.

CHAUDHURI
Very briefly, we looked into a form of brain scan which is called proton magnetic resononance spectoscocpy into a part of the brain called bezoglangia in patients with ME and we found abnormal scans. we also looked into the pain threshold experience of otherwise active people with ME and their pain threshold was substantially reduced by exercises and we also tried to sub group or sub classify patients with ME by doing a test called resting energy expenditure and at least in one sub group we found that they actually spend more energy which could be linked to abnormalities of one of the iron channels, potassium channels in the cell membrane which is perhaps interesting and last but not least extending what Dr Kerr said before we did look into the genome wide expression of abnormal gene signatures in patients with ME and also found very important differences between normal people and ME patients.

WHITE
So although you are looking at brain behaviour you are really looking at it from a physiological point of view.

CHAUDHURI
That’s right.

WHITE
And Dr Crawley um in your case what in particular is your area of work?

CRAWLEY
Hallo Peter. We are looking at the epidemiology of chronic fatigue syndrome in children. Dr Phoebe talked about the fact that there is very little information out there and the fact that there is so little basic foundation in research really inhibits developing really good research proposals and taking things further I mean for example in children we don’t even know if this affects half a percent of the population or 9% of the population. So in some senses NICE guidelines say we need further basic foundation in research particularly in how common it is and who it affects.

WHITE
Now we are also joined by Professor Colin Blakemore, Professor of Neuroscience at Oxford University and until recently Chief Executive of the Medical Research Council. So Professor Blakemore we accept that you are not now talking for them but obviously informed by your experience. Could you just explain what bodies you can apply to for research funding?

BLAKEMORE
Yes and can I say that because of a technical hitch here, I am talking from Oxford, I didn’t hear all of the introduction. I am sorry not to have heard the comments of the other contributors. Well, researchers in this area as in any other area of medical research have a number of agencies to which they can apply for funds. Some of them are lucky enough to be able to apply to their own universities or hospitals for support directly but most have to come to some kind of central agency. The lottery funds can provide money in some cases but the obvious sources are the charities, including the Welcome Trust, which is now actually just ahead of the MRC the biggest funder of medical research in this country and then the MRC, the Medical Research Council itself and increasingly the Dept of Health whose budget again for research is larger than that of the Medical Research Council.

WHITE
And on the MRC itself, now obviously it can’t fund every application but in general terms what are its criteria because we have heard what Dr Chaudhury and Dr Crawley are doing. How do you decide what to fund?

BLAKEMORE
Well it certainly can’t fund every application. At the moment the success rate is about 20%, 1 in 5 applications, is funded and I think that is actually the lowest amongst all the Research Councils so we do have a major problem here with the demand from the community. The criteria – it does depend a little bit on the way in which the applications are solicited. And I should say that the Research Councils, in general, unlike some of the medical charities mainly work in what I call response mode. They consider applications within their area of research, from scientists, who simply send their proposals in and research boards then consider if the work is of high quality, whether it is likely to produce results which are meaningful and whether those results are likely to have an impact on medical and clinical understanding and practice. Those are the three real criteria but this is done simply in response to what the community says

WHITE
So is it based on such things as the severity of the disease or its cost to the nation or indeed the suffering caused. Because you didn’t really mention of those just its scientific provenance as it were

BLAKEMORE
Well I said is it likely to have impact and the definition certainly includes the burden of disease but that is not to say the Medical Research Council does or I would argue should limit its activities only to the commonest diseases and if this was a programme about a condition which is much rarer than chronic fatigue syndrome I think there would be outrage amongst families and patients that public money wasn’t being directed towards those orphan areas as well. So the MRC really has a public obligation since it uses tax payers money to address the whole of the problems of medical research.

WHITE
So lets look at the point that is being made. A lot in the emails that we are receiving that it doesn’t attract enough funding. Dr Crawley I mean do you accept that and why do you think it does fail to attract enough funding if so.

CRAWLEY
I think there are lots of problems with research and chronic fatigue syndrome. One of the big problems that is being alluded to by many of your listeners and by the other contributors is that it is a very variable condition. It presents in lots of different ways. There are potentially many different sub types and this makes research much, much harder. I think that one of the great things about the UK at the moment is this collaborative centre as it were where we are now seeing 6,000 adults and children a year that are well characterised and all followed up. So we have the potential now in the UK to really move things forward in terms of research. I think the other big problem in research in chronic fatigue syndrome as opposed to other diseases is that it doesn’t sit nicely into one disease group. It is defined by the WHO as a neurological condition but it actually affects the cardiology system, it affects the gut, it affects the skin, temperature regulation, hormones, immune system and everything. So when researchers put applications into any funding body it is often very difficult to know where to put it and who should review it and I think those two problems really contribute to the difficulties in getting the research funded.

WHITE
I want to allude back to something that has been dogging this debate over the week. One of the big debates on Radio 4’s Choice is Yours message board has been whether enough money is going into biological/physical research. Dozens of callers say too much of the funding goes towards psychiatric research. We invited the MRC to take part in this programme unfortunately no one was available but they did give us this statement which, part of it says, “the applications that we receive in relation to chronic fatigue syndrome ME cover many areas and therefore are assessed by the Board which is most relevant to the research being proposed.” That point that Dr Crawley was making. “There are a wide range of experts on the Board and some are Psychiatrists Nevertheless we do fund non psychiatric proposals in CFS ME”. Colin Blakemore, we know you are not speaking for them but there is the suggestion that research is being weighted towards psychiatric solutions. Is there any truth in that do you think?

BLAKEMORE
The major grants which are funded by the MRC in this area are intervention studies. Actually I mean this is a personal prejudice of mine I think that the distinction between psychiatric and non psychiatric forms of treatment is not actually a very helpful one and the comparison I have made in the past is depression which is quite clearly a physical condition. We know about disturbances in the pathways of the brain and chemical balance of the brain and so on that is thought to underly depression. It can be treated and treated actually with equal effect by either drugs, very biological treatment or cognitive behavioral therapy and interestingly when you look at the changes in the brain produced by those two they have very similar effects on the basic metabolism and chemistry of the brain so I don’t think we should get too hung up on the fact that some of this research is being done in Depts of Psychiatry or by people who happen to be Psychiatrists. It is true that intervention studies are mainly about behavioral interventions to try to help people to get to grips with their symptoms and run their lives better but there are also major epidemiological studies, that is studies of the pattern and distribution of this condition in the population, to try and understand what has just been pointed out that is the variability of the condition and some of the underlying predisposing factors and that will help us towards an understanding of the biological basis of this disease.

WHITE
Perhaps in the few minutes that we have got let we should move perhaps to the sort of solutions that might be possible. Can I go back to our MRC statement because Professor Holgate in that says they are “planning to set up a multi disciplinary body”. He said “chronic fatigue syndrome ME remains a high priority area for the MRC and we are continuing to look at ways of encouraging more research into this field . We are also planning to set up a multi disciplinary panel to plan a future across cross disciplinary activity in this field.” Sorry for all those hyphens. Dr Chaudhuri is that the way we need to be going?

CHAUDHURI
Certainly yes any research is welcome but as everyone has pointed out that ME has very variable symptoms but equally what is very important here is that we must learn to sub classify them into appropriate groups and find out what is the most appropriate intervention for those who are severely affected and those who may be predominantly less mobile but perhaps still able to carry out some of their activities with ease. And it is very similar to what we find in other symptom driven conditions such as epilepsy or migraine where you need to sub group patients in order to get the best response both from the results point of view and also from the understanding of the mechanisms of the disease and unless we attempt it we will never get the answer and what is happening now at the centre of the research we are targeting essentially what I would consider a rehabilitative approach which is absolutely vital and important in ME, and perhaps also in other conditions, but that is not answering the fundamental issue that what are the variabilities and what causes the variabilities on a biological basis and if you don’t want to address that unfortunately we will never find the solution.

WHITE
Esther Crawley quite briefly what do you think is the most important thing we can do?

CRAWLEY
I think this is a really great way forward. The MRC and ATHME had a large meeting a year ago, almost to the day, where they got scientists from all sorts of disciplines together to really try and work out how to tackle this issue. I mean as someone who does a lot of chronic fatigue work and research I am not going to know everything there is to know about sleep and all of the other areas that chronic fatigue affects so I think this strategy by the MRC is the right way forward.

WHITE
At least we have managed to end on an optimistic note. Dr Esther Crawley, Dr Abjhit Chaudhuri and Professor Colin Blakemore thanks all very much indeed. And if you want any information on organizations connected with ME you can call the Radio 4 Action Line on 0800 044 044 and don’t forget you can download all last week’s programmes on ME in the form of a Podcast. You can find them on our website bbc.co.uk/radio4/you and yours and you can also find our other podcasts such as our debate on whether developers should be allowed to build on the green belt through the same method.


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