Published in InterAction 63, Spring 2008
On 8 November, You and yours looked at some of the alternative treatments on offer for M.E. with Action for M.E.’s principal medical adviser, Professor Anthony Pinching, academic researcher and homeopath, Dr Elaine Weatherley- Jones, neurologist, Professor Leslie Findley, former GP David Mickel and GP and homeopath Dr Susie Rockwell.
Early in the programme, reporter Anna McNamee (AM) spoke to the founder of Mickel Therapy:
Mickel therapy
David Mickel (DM): “I’m formerly a general practitioner. I gave it up to develop Mickel Therapy, a talking treatment for M.E. which involves no medication or dietary change or supplements.
“It works on the basis that the cause of the condition is rooted in the hypothalamus gland, which is a very important central gland in our brain. The hypothalamus has gone into an overdrive state and Mickel Therapy is a process that’s designed to correct that.
AM: “How does Mickel Therapy work?”
DM: “Because we haven’t actually studied the answer to that question, we don’t actually know. Often this is the hardest selling point we have because it is just a talking therapy. Basically Mickel Therapy is a series of tools that we teach people with M.E. to apply to their symptoms that allows these symptoms to start to reduce until they finally stop.”
AM: “How many times would an M.E. patient expect to have to see you and what would that cost?”
DM: “The number of times varies from individual to individual but the average number of sessions tends to be around eight. Currently in the UK it’s about £80 a session.”
AM: “So we’re probably looking at something in the region of £640-£800 over the course of the treatment?”
DM: “Yeah that’s right.”
AM: “Have there been any studies that actually show that Mickel Therapy works?”
DM: “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. 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 an external body examines it, there’s no credence really.”
CA: “Professor Anthony Pinching, what do you make of Mickel Therapy?”
Prof Pinching: “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. 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. Until (then), all we can say is we’re dealing with anecdote.”
CA: “Professor Leslie Findley, are you getting patients coming to you saying, ‘I’ve tried Mickel Therapy and it does work for me’?”
Prof Findley: “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.
“That’s the talking bit. Really it’s not that different in theory from reverse therapy – influencing the function of the hypothalamus which is said to be in conflict between the mind body and the brain body.”
CA: “Many people would argue this is actually about seeing a therapist rather than the therapy. We all feel better if we talk things through, don’t we?”
Prof Pinching: “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, conventional or otherwise, involve 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 and to reduce the secondary impact of illness.
“I think those are things which we need to separate out from a specific intervention which may be the headline label of the therapy.”
Homeopathy
CA: “Dr Susie Rockwell is an NHS GP and she also runs a private practice offering homeopathic treatment.”
Dr Rockwell: “Homeopathy is a natural system of medicine where we’re aiming to stimulate the body to heal itself. It works on a principle of similars – treating like with like. For example, if you chop an onion you normally get streaming eyes and nose, 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.
“M.E. is like any other condition that I’d treat homeopathically. I think, what is it that’s special for this person about why they’re ill. What makes them tick, what upsets them, stresses them – that sort of thing. 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 M.E., usually it’s much more subtle onset. After two or three weeks people start to say, ‘I don’t feel so ill’ or ‘I feel better in myself.’”
AM: “How much would this all cost?”
Dr 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.”
AM: “Is there any proof that homeopathy works when it comes to treating M.E.?”
Dr Rockwell: “Certainly at Bristol Homeopathic Hospital M.E. or chronic fatigue is the second most commonly treated condition. I’ve got a graph of their results. 22% of people felt much better, 34% better, 38% slightly better, 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 M.E., they’re complex conditions and complex approaches. While live studies have been attempted there’s a problem with getting enough people recruited.”
CA: “Dr Elaine Weatherley-Jones, you’re an honorary researcher in homeopathy and you have treated people with M.E. Do you think it works and if so why?”
Dr W-J: “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.”
CA: “So how would you decide who to give what to?”
Dr W-J: “For example, somebody with M.E./CFS may have had symptoms ever since they 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.”
CA: “Let’s talk about the example of bronchitis or pneumonia. How would you treat somebody like that who had M.E.?”
Dr W-J: “(With) any one 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 M.E., 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.”
CA: “You have done some research, when you were at Sheffield University. What did you find?”
Randomised controlled trial
Dr W-J: “I did what’s called a gold standard – a randomised controlled trial – with a group of patients who had some dummy pills and a group of patients who had some real homeopathic medicine. Over 100 people took part. They were recruited from two hospitals in Yorkshire, infectious disease departments treating CFS/M.E. Each patient saw a professionally-qualified homeopath for a period of six months, about once a month.
“We were trying 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.
“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 – so there is also likely to be a therapist effect as well.”
Nutrition
CA: “Many people with M.E. are given advice on nutrition. Anna McNamee went along to see Niki Gratrix at the Optimum Health Clinic on London’s Harley Street.”
Niki Gratrix (NG): “I’m a qualified nutritional therapist and I work with M.E. patients using diet and mainly supplementation to help treat their illness.”
AM: “Somebody who suffers from M.E. could see a dietician on the NHS, why wouldn’t they just do that, why would they come and see a nutritional therapist instead?”
NG: “I’m looking at the latest research and I’m applying that, whereas a dietician tends to follow much more the orthodox line.
“(M.E.) is a complex illness. 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 one particular treatment. The dieticians have to follow the party line and until something like double-blind placebo- controlled experiments are done and the NHS agrees with them, 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 are responsible for producing energy at a cellular level. The sort of things that we’d use to help treat this are things like D-ribose, vitamin B3, co-enzyme Q10, 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.”
AM: “How much does it cost?”
NG: “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.”
AM: “Once somebody does sign up we’re talking hundreds, possibly thousands of pounds?”
NG: “Yeah, unfortunately. We think we should get government funding.”
AM: “For those that it doesn’t help, it’s a lot of money. It’s a big gamble for somebody who’s already ill.”
NG: “There’s probably about 10-20% of patients that are really tricky to treat with this illness. 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 the City. If I was financially motivated I’d have stayed in that.”
CA: “Professor Findley, does nutrition have a role in controlling the symptoms of M.E.?”
Prof Findley: “It does because food intolerances, irritable bowel and so on are very common in people with fatigue syndrome.”
CA: “Do you think there’s evidence that giving supplements, paying out money for magnesium or capsules or whatever it is, is worth doing?” Prof Findley: “No I don’t think going to that extreme is worth doing but conventional nutritional input is of value and this is available through the health service in most places.”
Prof Pinching: “At my previous unit, the dietician and other colleagues analysed a widely recommended diet for people with M.E., the so-called anti- candida low sugar, low yeast diet. They compared it with a healthy eating diet in a randomised format and also divided people into those with irritable bowel syndrome and those without. 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 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.”
What works?
CA: “So Professor Pinching, if you had to pick out things that your patients are telling you work, what would those things be – even if there’s no evidence?”
Prof Pinching: “Lifestyle management, pacing, graded rehabilitation, whatever you want to call it. How to reorder their lives in the context of illness.
“The bottom line is that it 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.”
InterAction hopes to bring you extracts from other programmes in the series, in the next issue. To listen to recordings or read the full unedited transcripts of the You and yours M.E. series, go to: BBC Radio 4
The BBC transcripts on which this feature is based were typed from recordings and not copied from a script. Because of the risk of mishearing and the difficulty in some cases of identifying individual speakers, the BBC cannot vouch for their complete accuracy. With permission from the BBC, Action for M.E. has adapted these transcripts for InterAction purposes, editing in the interests of space and readability.
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