I've got nothing to lose by trying it - Weighing up claims about cures and treatments for long-term conditions
The last ten years has seen a rise in use of the internet and patient chat-rooms and forums for people with chronic diseases. These offer valuable support, but have also brought masses of advertising, surreptitious promotion and misleading stories. Today patient charities, doctors and scientists are warning people with long-term incurable conditions about the emotional and financial costs of over-hyped treatment claims that sell false hope.
Online adverts and chat-room conversations testify to the ‘incredible’ benefits of new medicines and treatments selling the empty promise of curing the incurable. But the evidence for many treatment claims is unreliable and patients’ yearning for improvement is being exploited. Whilst people must be left to make up their own minds about what treatments to use, doctors and scientists are critical of those who aggressively market - with misleading claims, optimistic testimonials and even pseudo science - to people who are desperate for some source of hope. Leaving them unsure about what to try and uncertain where to draw the line.
The guide, published by Sense About Science with the Multiple Sclerosis Society, Motor Neurone Disease Association, Alzheimer’s Society and Parkinson’s Disease Society, explains how to tell the beneficial from the bogus in the face of the miracle cure stories, new wonder-drugs and breakthrough therapies that are increasingly promoted.
Tracey Brown, Managing Director, Sense About Science: “We’ve been contacted by so many people exhausted from the pressure they feel to try advertised treatments, dietary regimes and exercises. One person told us how the last years of his wife’s life were spent endlessly pursuing new treatments, from goats blood serums to unlicensed stem cell treatments abroad, all to no avail. This guide aims to help patients and their families to evaluate the treatment claims they are bombarded with.”
Comments
Ian Douglas has multiple sclerosis: “Patients with incurable chronic conditions find optimism and hope in very short supply. This makes them particularly vulnerable to treatments that are supported only by anecdote and rumour.”
Geoff Butcher has Parkinson’s disease:“When you have a serious progressive disease for which there is only symptomatic relief but no cure, the temptation is to try almost anything, usually on the slenderest of evidence, to prolong active life.”
Phil Willis MP, Chair of the Innovation, Universities, Science and Skills Select Committee: “The cruellest deception for a patient with chronic illness is the promise of a cure based on empty hope not evidence. The publication of ‘I’ve got nothing to lose by trying it’ is an inspired attempt to empower patients to evaluate so called ‘miracle cures’ with evidence based advice.”
Dr Margaret McCartney, GP: “Patient choice should be a good thing, but one has to be sure that the information people have to make choices is fair and unbiased. Hopefully this booklet will be a good starting point for people who are keen to get better information about recent health developments.”
Dr Kieran Breen, Director of Research, Parkinson’s Disease Society: “It can be tempting to believe personal stories of miracle cures, but only by using tried and tested methods can we move forward and provide people with Parkinson’s with the best available advice and treatments.”
Nickie Hallam has multiple sclerosis: “I wish I’d read something like this 20 years ago. I may have saved angst, money and possibly aggravating my condition.”
Hazel Thornton, Patient Advocate: “This leaflet will give a real boost to confidence to anyone trying to make sense of the health claims they find in the press and elsewhere. It will help them bring a critical eye and a questioning mind to what they read and hear.”
Dr Clare Gerada, Vice-Chair, Royal College of GPs: “This guide provides a wealth of sensible information to patients and the public. It goes a long way to taking the mystery out of medicine and I would recommend it to patients as a common-sense read.”
Dr Lee Dunster, Head of Research at the MS Society:“The significance of giving people information that is credible, accurate and based on evidence cannot be underestimated and that is why the MS Society has been involved in this important initiative.”
Professor Colin Blakemore, President of the Motor Neurone Disease Association: “The internet, the media and advertising have given everyone access to a bewildering range of opinions and statements about improving health and treating disease. This new guide from Sense about Science describes the tried and tested methods for discovering whether treatments work. It will help everyone, especially patients and carers, to navigate through the hype, the fantasy and the commercial exploitation, and will help us all to make sensible, informed decisions about how to safeguard our health.”
Coverage so far includes:
BBC News online “Warning over untested remedy use “
The Independent online “Warning over online ‘miracle cures’”
The Daily Telegraph online “Patients warned over online ‘miracle cure’ claims “
Today Programme on BBC Radio 4 Listen again here
NeuroLogica “Sense About Science”
The Quackometer “The Society of Homeopaths Have Nothing to Lose by Winging It”
Last updated: January 20 2009
