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| TX: 10.11.08 - Unproven Treatments PRESENTER: JULIAN WORRICKER |
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| Downloaded from www.bbc.co.uk/radio4 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. WORRICKER Now pills that cure Alzheimer's, stem cells that cure neurological conditions or nutritional supplements which kill cancer. Now none of them is proven but all are very easy to find, especially on the internet, in chat rooms and in some less than accurate articles. Today scientists and doctors and indeed charities are fighting back. They're warning people with long term incurable conditions who may think they have nothing to lose that they may indeed lose quite a lot by trying some of these. Carolyn Atkinson is here. Who is fighting back and how Carolyn? ATKINSON Well this is all about sorting out the beneficial from the bogus, stopping people selling false hope both emotionally and financially. The fight back is coming from a charity called Sense about Science. That charity promotes evidence in good science for the public. It's joined forces with a lot of organisations including Parkinson's Disease, Multiple Sclerosis, Motor Neurone, Alzheimer's and their action was actually prompted by getting so many calls from the public asking for help and information about what does and doesn't work that they've actually published a document and it's called I've Got Nothing to Lose by Trying It. Now over the past few years on You and Yours we've been reporting on some of these claims. One in particular is stem cell therapies. Scores of British people with MS and other neurological conditions have been going to a clinic in Holland. They've been paying up to £15,000 for the injection of stem cells, and it was run by a Dr Robert Trossell, who was very upbeat about his unproven treatment. TROSSELL The patients - the best responders are the people with spinal cord injuries and relative young children with brain damage. We've treated almost all neurological patients. The fairly large group are the MS patients and they seem to have quite a variable response because of the nature of the disease. There's about 10% that has an excellent, extremely well response, there's 70% that has a favourable response in about three months so that they would say yes they would do it again and there's 30% of non responders. And obviously we're looking what is the difference between them and how can we select these people. ATKINSON Well as we then reported the Dutch authorities banned that stem cell procedure. Here the doctor's been under investigation since January 2007 by the General Medical Council and the procedure itself has been offered in other locations including the Seychelles. Now last year we also spoke to Malcolm and Linda Pear from Worcester who were initially at least given hope by a treatment, at first it seemed almost miraculous. Malcolm who also had MS went from using a scooter or a wheelchair to walking round the park with his dog. Now they spread the word, they took more than 800 phone calls, they appeared in the press but then less than three months after having the injections Linda and Malcolm say the miracle stopped. MALCOLM I'm sort of lower down now than I was prior to stem cell, so I find it a bit depressing. LINDA It's very cruel to give people so much hope and to have their hopes dashed. Don't do it, very simply, keep your money in your wallet or in the bank. It costs an horrendous amount of money, money that a lot of people can very, very ill afford and I do appreciate that everybody clings to hope but I mean we've done quite a lot of research and there's very few people that we know of that have had this treatment that have had any significant long term benefits. So I would say don't do it. WORRICKER Malcolm and Linda Pear talking to us last year. On the line is Professor Colin Blakemore from the University of Oxford, he was formerly head of the Medical Research Council and has recently been appointed president of the Motor Neurone Disease Association. Give us some other examples, Colin Blakemore, of the sort of thing we're talking about here. BLAKEMORE Well the claims I think that lead to people being misled are very varied, they're everything from vitamin supplement claims, for instance, we see everywhere in the newspapers, right through to the extremes of things like stem cell therapy. A lot of them are based on naturally occurring substances - food and food supplements - partly because the legal situation with those is less demanding than for things that purport to be real medicines. WORRICKER And it's true to say as well, isn't it, that for some people they work? BLAKEMORE Well for everybody things have a chance of some kind of benefit which has nothing to do with the therapy at all, I mean the body's own response to thinking that you're taking a treatment can sometimes have temporary effects. I mean elevating morale, making you feel better for a while, it's a well known placebo effect. And the way in which drugs and treatments are properly tested has to take that into account and a lot of the claims that are made for these untested treatments are almost certainly based on the placebo effect. We've just heard an example there, I think, with the stem cell treatment, people who invest so much money, time and expectation in going abroad for an untested potentially dangerous treatment .... WORRICKER So is it the money - is it the money or the medical side of this which most concerns you? BLAKEMORE It's certainly the medical side, I mean it's an outrage that people should have to pay a large amount of money for totally untested treatments that don't work. But the biggest fear, of course, is that they might actually be dangerous and they might undermine the proper roots to treat them because of course some of these treatments could interact in an adverse way with proper treatments that patients are receiving. WORRICKER And are there ways in which people can pick their way through some of these adverts and arrive at a slightly more informed conclusion if they do want to try something which they've heard good things about from other sources? BLAKEMORE The first thing to do is to read to the very bottom of the website or the advertisement to see what the disclaimers are, usually in very small print at the bottom, remember these people do have legal advisors. Just one in front of me that says for instance after making very excessive claims about ginko for treating Alzheimer's Disease, says - these statements have not been evaluated by the FDA - that's the regulatory agency in the United States - these products are not intended to diagnose, treat, cure or prevent any disease, the information provided on this site is for educational purposes only. But this is a company that wants to charge you $150 a year to buy an unproven food supplement. Read to the end and also go to the established websites - medical charities, well known medical charities and NHS sites, the NHS choices website, for instance, and talk to your own GP. WORRICKER We will have to leave it there. Thank you very much indeed for coming on the programme - Professor Colin Blakemore. Back to the You and Yours homepage The BBC is not responsible for external websites |
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