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TX: 08.11.07 - Alternative Treatments for ME

PRESENTER: 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.


WAITE
Now reverse therapy, the lightening process, emotional freedom technique, reflexology, acupuncture, homeopathy - all of them are offered as treatments for ME. And as we've heard in our series of reports this week ME is an illness with a very diverse range of symptoms, with many people desperate to find something that will help them cope with the condition.

FACTS
ME or Myalgic Encephalomyelitis is a chronic disabling illness, it's also known as chronic fatigue syndrome and post viral fatigue 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 react a diagnosis.

The symptoms can include severe fatigue, problems with memory and concentration, muscle pain and sleep problems, though the symptoms can vary from patient to patient.

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

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

WAITE
Some of the essential facts about ME. And the music you heard there was a track from the Scottish band Belle and Sebastian whose lead singer, Stuart Murdoch, had the condition.

Well yesterday we looked at cognitive behavioural therapy, one of the treatments available on the NHS and recommended by the NICE guidelines for people with mild to moderate ME. Today our disability affairs reporter Carolyn Atkinson takes a look at some of the treatments available in the private sector and there are a lot of them, all varying in approach and method and cost. But Carolyn's with us. The response to the series so far Carolyn has been pretty overwhelming hasn't it.

ATKINSON
It has indeed. Since we started out series on ME last Friday we've had a huge response about this illness from many of you. Lots have phoned the Radio 4 Action Line for more information, we've received almost 400 e-mails and over 500 posts on the Radio 4 The Choice is Yours message board. Now many of those messages reveal the utter desperation that people feel in trying to find a treatment for ME. For example, the woman who says: Doctors did nothing except offer cold stethoscopes, blood tests and an x-ray. She says the only treatment that worked for her was reflexology - that's the ancient pressure massage of the foot. She now says she feels fully recovered. And another wrote to say: The real breakthrough for me was homeopathy.

Well to discuss this world of alternatives I've been speaking to Anthony Pinching, he's professor clinical immunology at the Royal Cornwall Hospital, who takes what you might call a conventional approach. We've also spoken to academic researcher and homeopath Dr Elaine Weatherley-Jones. But first Professor Leslie Findlay, an NHS neurologist who also runs the National ME Centre, which is a charity and he has his own private practice offering a range of approaches including exclusion diets, nutritional supplements and hypnosis. And I started by asking him why people with ME are looking for alternatives.

FINDLAY
It is perceived that we don't have satisfactory treatment in the orthodox areas. And there is a sparcity of services. So naturally patients will go and seek help wherever they can get it.

ATKINSON
I mean the key problem is there's no way of diagnosing it is there specifically?

FINDLAY
You're quite right, there is no, as yet, no dipstick test.

ATKINSON
And yet the range of symptoms is a huge umbrella, there's people at one end who cannot get out of bed and there's other people who manage to run a reasonably normal life as long as they pace themselves.

FINDLAY
I don't think that's any different from other conditions such as Multiple Sclerosis but I think there is a basic error here in assuming that chronic fatigue syndrome is one entity. We're obviously looking at several different disorders, it's a syndromic diagnosis.

ATKINSON
And therefore when people aren't finding the answer in what you might call orthodox medicines - and we've only just recently had the NICE guidelines on what to do with people with ME - they're inevitably turning to the alternative areas.

FINDLAY
Absolutely.

ATKINSON
Does that worry you, in the sense that they're not getting answers from the orthodox areas and they are having to turn to the alternatives?

FINDLAY
Yes it does concern me that they have to go into the private sector and to alternative treatments. Though some alternative treatments have a lot to offer.

ATKINSON
I mean we are getting hundreds of messages on the Radio 4 message board, hundreds of e-mails to You and Yours all saying that many, many people find they're not being sort of treated properly by their doctors, they're not being listened to and they feel they have no alternative but to go down these other roads.

FINDLAY
I would agree with that view. Can alternative practitioners - and I'm not an alternative practitioner - can they help some people? The answer is obviously yes.

ATKINSON
Okay, well we're going to be looking at a selection of some of these treatments, obviously there are - there are many more than the ones we're going to look at. But Anna McNamee has been to speak to the founder of something called Mickel Therapy, which a lot of people have been e-mailing about and it's very controversial.

MICKEL
I'm David Mickel, formerly a general practitioner before I gave it up to develop Mickel Therapy, which is a talking treatment for the condition of ME specifically which involves no medication or dietary change or supplements. And it works on the basis that the cause of the condition of ME is rooted in the hypothalamus gland, which is a very important central gland in our brain, that the hypothalamus has gone into an overdrive state. And so Mickel Therapy is a process that's designed to correct that.

MCNAMEE
How does Mickel Therapy work?

MICKEL
Because we haven't actually been studied the answer to that question is we don't actually know. Often this is the hardest selling point we have because it is just a talking therapy, we don't use any medication or supplements or any other form of treatment. So basically Mickel Therapy is a series of tools that we teach people with ME to apply to their symptoms that allows these symptoms to start to reduce until they finally stop.

MCNAMEE
How many times would an ME patient expect to have to see you in order to benefit from Mickel Therapy and what would that cost?

MICKEL
Well the number of times varies from individual to individual but the average number of sessions tends to be around the eight session mark. Currently in the UK, although we've got practitioners all over the world who charge different fees, it's about £80 a session.

MCNAMEE
So overall then we're probably looking at something in the region of £640-£800 over the course of the treatment?

MICKEL
Yeah that's right.

MCNAMEE
Have there been any studies that actually show that Mickel Therapy works?

MICKEL
All we have at the moment is a caseload of 850 successfully treated people which represents 92% of our caseload over the years. But nobody seems to want to believe it. So what we're trying to do at the moment is I've written to the MRC and ministries of health to ask for our work to be studied because it's all very well us saying it but unless somebody - an external body - examines it and researches it there's no credence really.

ATKINSON
Dr Davie Mickel, the founder of Mickel Therapy.

Well still with us is Professor Findlay. Joining us from the Royal Cornwall Hospital is Professor Anthony Pinching. Professor Pinching, what do you make of Mickel Therapy?

PINCHING
Well clearly I hear about it from patients and people who talk about it, I don't think I can comment on it other than to say that some people find it has been helpful and others find that it has not and others find that some parts of it seem to have been something they've incorporated into their overall approach to treatment. So this is just like any other intervention, whether it's a medication or a supplement or a diet or a talking therapy - any of them can be studied and should be studied. And I think until we know that all we can say is we're dealing with anecdote, obviously it's very encouraging if some people find it helpful but I don't think the figures that Dr Mickel quoted are quite the figures I hear about informally from those patients who talk to me.

ATKINSON
But in terms of the medical evidence, if you like, this theory that the hypothalamus gland is overactive, does that makes sense to you?

PINCHING
Part of the difficulty is that some therapists will use language that sounds conventional or sounds orthodox but actually is using the same word to mean something different. When he talks about the hypothalamus being overactive that may not be the same as what an endocrinologist in the orthodox sector would describe.

ATKINSON
Professor Leslie Findlay as an NHS neurologist and as the clinical director of the National ME Centre are you getting patients coming to you at the ME Centre saying I've tried Mickel Therapy and it does work for me?

FINDLAY
I have some that say it works and some say it doesn't but the important question is intuitively could something that influences the function in the hypothalamus help chronic fatigue syndrome? Well we know the single factor that worsens fatigue syndrome is stress and if this therapy through the hypothalamus or any other organ actually reduces stress and the effects of stress then that will benefit chronic fatigue syndrome.

ATKINSON
And that's the talking bit is it?

FINDLAY
It is the talking bit. Really it's not that different in theory from reverse therapy.

ATKINSON
Briefly explain what reverse therapy is.

FINDLAY
Well again it's influencing the function of the hypothalamus which is said to be in conflict between the mind body and the brain body.

ATKINSON
Many people would argue this is actually about seeing a therapist rather than a therapy, we all feel better if we talk things through don't we.

PINCHING
I think whether it's a talking therapy or another intervention the therapist effect may be there and needs to be understood. We also need to understand that some of the talking therapies, whether again conventional or otherwise, involve, if you like, a common substrate of lifestyle management, adjustment and coping, ways of thinking about what the symptoms mean, reinterpreting the experience of illness in a way that empowers the person to live better more effectively and to reduce the secondary impact of illness. And I think those are things which we need to separate out from a specific intervention which may be the headline label of the therapy.

ATKINSON
Okay, Professor Anthony Pinching stay with us if you would because next we're going to move on to homeopathy. Now the pros and cons of homeopathy in the treatment of ME is something you've been discussing on the Radio 4 message board and in the e-mails to You and Yours. Dr Suzy Rockwell is an NHS GP and she also runs a private practice offering homeopathic treatment.

ROCKWELL
My case with the remedies that I use in practice, as you can see I've got about 90 remedies here and some of the ones I've used most for ME patients have been calc carb, bryonia ...

Homeopathy is a natural system of medicine where we're aiming to stimulate the body to heal itself. And it works on a principle of similars - treating like with like. So, for example, if you chop an onion you normally get streaming eyes and nose and so if someone's experiencing those same symptoms, for instance, with hay fever or a cold, if one gives them the remedy - Allium cepa - which is made from the red onion then the chances are that will improve their symptoms. ME is like any other condition that I'd treat homoeopathically and think what is it that's special for this person about why they're ill and the very specific features about them, about their personality, their character, what makes them tick, what upsets them, stresses them - that sort of thing. And by pulling together all those factors I can hopefully find a remedy which will help that person and improve their condition. Most remedies don't kick in instantly and give a sudden dramatic improvement with ME, usually it's much more subtle onset. So after two or three weeks people start to say ooh I don't feel so ill or I feel better in myself.

MCNAMEE
How much would this all cost?

ROCKWELL
I charge £110 for my first appointment and £45 for follow up appointments. Obviously people who are not doctors do charge rather less than medical homeopaths.

MCNAMEE
Is there any proof that homeopathy works when it comes to treating ME?

ROCKWELL
Certainly at Bristol Homeopathic Hospital ME or chronic fatigue is the second most commonly treated condition and I've got a graph here of their results. Twenty two percent of people felt much better, 34% better, 38% slightly better and only 3% had no change and 3% felt slightly worse. Unfortunately these days most people are hung up on double blind placebo controlled trials which are regarded as the gold standard in medicine. The difficulty is with both homeopathy and ME they're complex conditions and complex approaches and while live studies have been attempted there's a problem with getting enough people recruited.

ATKINSON
Dr Suzy Rockwell who's an NHS GP and also a homeopath.

Well joining us in the studio is Dr Elaine Weatherley-Jones, you're an honorary researcher in homeopathy and you have treated people with ME, do you think it works and if so why?

WEATHERLEY-JONES
It's very difficult to answer the question why does it work. What we aim to do, as clinicians, is to treat the totality, the entire, symptom picture that a patient presents with and to choose an individual remedy for that person.

ATKINSON
So how would you - how would you pick something out and decide who to give what to?

WEATHERLEY-JONES
Say, for example, somebody with ME CFS may have had symptoms ever since they've had a particularly bad respiratory infection, such as pneumonia or a very bad bronchitis, another person may have had CFS symptoms since they had a particularly bad emotional trauma.

ATKINSON
Let's talk about the example of bronchitis you gave or pneumonia, how would you treat somebody like that who had ME?

WEATHERLEY-JONES
Anyone of 3,000 homeopathic medicines. But it needs to be prescribed by a professional homeopath and also it's very important to say that in the treatment of CFS ME that patients should, before they come to any complementary practitioner, have had enough tests to make sure that the diagnosis has been confirmed and they haven't got any other underlying causes for their fatigue.

ATKINSON
Now Dr Suzy Rockwell was talking about the problems of doing trials, you have done some research, when you were at Sheffield University, now what did your research encompass and what did you find?

WEATHERLEY-JONES
I did what's called a gold standard - a randomised control trial - with a group of patients who had some dummy pills, a group of patients who had some real homeopathic medicine. Everybody in the trial - that's over a hundred people took part - they were recruited from hospital departments treating CFS ME, two hospitals in Yorkshire, infectious disease departments. Each patient saw a homeopath, a professionally qualified homeopath, for a period of six months, about once a month. What we were trying to do was really to tease out is this the therapist or is this the therapy - is there something in the consultation, is there something in the homeopathic medicine. And what my results showed was that nearly half of the people who had the real medicine showed an improvement on a scale of general fatigue, whereas just under a third of those people who had a dummy pill also improved on that general fatigue. And this difference, when tested statistically, is likely to be due more to the homeopathic medicine itself than to the therapist effect. However, if we looked at the results overall a quarter of people improved on all of the measures of fatigue that we were looking at and so what we can say is that there is also likely to be a therapist effect as well.

ATKINSON
So as a homeopath though you're accepting that it might not be the homeopathy that's doing the trick here?

WEATHERLEY-JONES
These are very promising results that indicate that there is a probability that there is something not only in the therapist - in other words the homeopath and the consultation - but actually the medicine itself also has a specific effect when we compare people who have real medicine compared to people who have the placebo or the dummy medicine.

ATKINSON
Professor Findlay, the problem here is, isn't it, that whatever the last thing somebody had was and they suddenly feel better they're going to tie the two together aren't they?

FINDLAY
Well this is a condition which will naturally improve in many patients, so any treatment you introduce it's always a question of whether they're actually going into an improvement phase. Homeopaths have offered a lot of patients a lot of support in other ways, probably because we haven't got enough orthodox support for these patients.

ATKINSON
And Professor Pinching, I mean there's been a big row recently about whether homeopathy should be available at all on the NHS but from what you've heard from the trial evidence do you think there's something in it?

PINCHING
I think what Elaine has described is exactly the sort of process we need more of, where people are taking a rigorous analytical approach to an intervention that they think holds some promise and to assess it in such a way that we can tease out the differential effect. Now a single study at the beginning of a long journey, there are lots and lots of negative studies on conventional medication, there's a whole range of medications that have been tried and found not to work in CFS ME. And one study is just - to my mind - a. it's interesting what it goes to show but it shows above all that it is possible to do such a rigorous analysis and that there isn't some sort of sense in which complementary alternative therapies cannot be analysed in that way.

ATKINSON
Okay Professor Pinching thank you.

Well nutrition is an area that is under the spotlight and concentrated very heavily upon for a host of long term conditions and ME is no different. Many people with ME are given advice on nutrition. Anna McNamee went along to the Optimum Health Clinic on London's Harley Street.

GRATRIX
My name's Niki Gratrix, I'm a qualified nutritional therapist and I work with ME patients using diet and mainly supplementation to help treat their illness.

MCNAMEE
Somebody who suffers from ME could see a dietician on the NHS, why wouldn't they just do that, why would they come and see a nutritional therapist instead?

GRATRIX
I'm looking at the latest research and I'm applying that and utilising it in a clinical setting. Whereas a dietician tends to follow much more the orthodox line. And it's a complex illness within every patient there are sub-groups with different underlying causes and problems, so it's very difficult to get studies done that are replicated that prove that there's this one thing that you need to do, this one particular treatment. So what ends up happening is that there's no treatment that comes up for it and that's the problem - the dieticians really have to follow the party line and until something like double blind placebo controlled experiments are done and the NHS agrees with those then they're not going to be doing much else. So we're the ones looking at the latest research and applying it straightaway.

When I see patients we spend a lot of time talking about mitochondrial function, one of the things that we look at is how we can help improve the function of mitochondria because these produce - these are responsible for producing energy at a cellular level. And the sort of things that we'd use to help treat this are things like, for example, D-ribose, is one example. Another thing that we'd use to help reboot mitochondrial function is vitamin B3. Another one is co-enzyme Q10. Another we use a lot is something called co-enzyme A. Magnesium is also very important in quite high dosage. And we'd also look at things which would help to clear out any toxins that are blocking mitochondrial function.

MCNAMEE
How much does it cost?

GRATRIX
For an initial consultation it's £135 - that's an hour and a half. The nutritional therapists are £90 an hour and the follow ups are usually 45 minutes by phone, so you can sort of work how much that would be.

MCNAMEE
Once somebody does sign up we're talking hundreds, possibly thousands of pounds no?

GRATRIX
Yeah unfortunately we're on their side, if we could get government funding for what we're doing, we think we should get government funding, then we'd do it.

MCNAMEE
But for those ones that it doesn't help it's a lot of money and it's a big gamble for somebody who's already ill.

GRATRIX
I'm not going to lie there's probably about maybe 10-20% of patients that are really tricky to treat with this illness. You know for anybody who thinks that we're just in this to make money, if I was motivated by money I would have stayed in my last job - I'm a qualified chartered accountant - in the job that I'm doing now I don't even earn half of what I was earning working in hedge firms in the city. So if I was financially motivated I'd have stayed in that.

ATKINSON
Nutritionist Niki Gratrix.

Professor Findlay does nutrition, in your view, have a role in controlling the symptoms of ME?

FINDLAY
The answer is it does because nutritional symptoms - bowel symptoms - food intolerances, irritable bowel and so on are very common in people with fatigue syndrome.

ATKINSON
And do you think there's evidence or practical evidence, from your point of view, from the patient point of view, that giving supplements, paying out money for magnesium or capsules or whatever it is is worth doing?

FINDLAY
And no I don't think going to that extreme it is worth doing but conventional dietary input, conventional nutritional input is of value and this is available through the health service in most places.

ATKINSON
Professor Pinching, at the Peninsula Medical School what's your take on nutrition, is it something that should be seriously looked at for people with ME?

PINCHING
I think the answer is that the evidence of a general sort is again lacking. There are anecdotes around, and unfortunately a lot of these anecdotes are sort of doing the circuits without actually getting into a formal study. As an example of this on my previous unit - the dietician and other colleagues - analysed a widely recommended diet for people with CFS ME, the so-called anti candida low sugar, low yeast diet and compared that with a healthy eating diet in a randomised format and also divided people into those with irritable bowel syndrome and those without. And although it was a relatively small study it was pretty clear that first of all the healthy eating diet was easier to stick with and actually was not so costly but secondly that there was no clear benefit that the anti candida diet gave beyond what you get with a healthy eating diet.

ATKINSON
So Professor Pinching if you had to pick out things that your patients are telling work what would those things be?

PINCHING
Well ...

ATKINSON
Even if there's no evidence.

PINCHING
Lifestyle management, pacing, graded rehabilitation, whatever you want to call it, of how to reorder their lives in the context of illness. The bottom line is that works for everybody - it's very hard to do, it's very boring, it needs guidance and support because it's a major change in a person's life. But with an appropriate level of support, information and guidance and the individualisation of therapy it does work for the vast majority of people, either to manage better within the level they're at or to improve the level they're at.

ATKINSON
But the interesting thing about that is those are all the things that are in the NICE guidelines and you're not mentioning any what you might call alternative therapies at all.

PINCHING
Well and that's maybe because I'm a conventional quack.

ATKINSON
Professor Findlay, are any of the alternative treatments anything that you would put in your top three?

FINDLAY
I think dietary and nutritional input is important for some patients, they undoubtedly have bowel symptoms. And I think there's good advice what Professor Pinching offers them.

ATKINSON
And let's talk about some of the other alternative treatments that people are certainly e-mailing us about with good experiences and bad. We've got things like massage, we've got yoga, meditation - I mean if you google you're finding things like emotional freedom techniques from the Bowen Technique, I mean what's in those.

FINDLAY
Any treatment which induces relaxation and reduction in stress response will improve chronic fatigue syndrome and many other conditions but specifically chronic fatigue syndrome. So if something is non-harmful, it is not expensive and it induces relaxation and the patient says do you think this is good for me I would not be against them trying it.

PINCHING
Some patients have undoubtedly, for example, found massage to be helpful. Listening to patients I've found that that's particularly relevant for people with certain sorts of muscle pain and muscle over - spontaneous over activity. And it's a question of tailoring the patient's needs with therapies that speak to them, that are helpful for them and hopefully available without excessive cost.

ATKINSON
The depressing thing about all of this surely is that there are no answers here and everyone's just scrabbling round in the dark.

FINDLAY
We're not scrabbling around in the dark and there is some light here. It is not impossible to diagnose this condition and it's not impossible to manage most patients. Because we haven't got the dipstick test that everybody craves doesn't mean the condition is not manageable.

ATKINSON
Professor Pinching is there light here?

PINCHING
Well I think there's always light and I think the key thing is that light is at last being shone on this disease that has been so long neglected and ignored. And I think whatever the deficits and restrictions of our knowledge and treatment availability it is a great deal better than it was even five or 10 years ago and people are studying this, there are more formal studies going on and I think that's hopeful, that will produce light.

ATKINSON
I was talking there to Professor Anthony Pinching from the Royal Cornwall Hospital; Professor Leslie Findlay an NHS neurologist who also runs a private practice for people with ME and academic and homeopath Dr Elaine Weatherley-Jones.

WAITE
Carolyn Atkinson thank you very much indeed.

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