UK Experts Warn About Untested Remedies And Issue Guide To Consumers

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Main Category: Complementary Medicine / Alternative Medicine
Also Included In: Cancer / Oncology;  Alzheimer's / Dementia;  Parkinson's Disease
Article Date: 11 Nov 2008 - 0:00 PST

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Medical experts from UK charities concerned about the rise in miracle cure stories, wonder drugs and so-called breakthrough therapies have teamed up to produce a guide that explains how to tell the beneficial from the bogus.

The guide, titled "I've Got Nothing to Lose By trying It", is published by Sense About Science, together with the Multiple Sclerosis Society, Motor Neurone Disease Association, Alzheimer's Society and Parkinson's Disease Society and is available as a PDF download from the publisher's website.

Sense About Science said the guide is intended to help consumers and patients weigh up claims about cures and treatments for long-term conditions as more and more people use the internet, chat rooms and forums as a source of information and advice on chronic diseases. While such sources offer valuable support, they also abound with advertising and misleading stories, they said.

Many medical charities, health professionals, scientists and researchers are concerned about people with long term incurable conditions falling victim to over-hyped claims about untested treatments that sell false hope and result in considerable emotional and financial cost.

Nickie Hallam, who has multiple sclerosis said:

"I wish I'd read something like this 20 years ago. I may have saved angst, money and possibly aggravating my condition."

Sense About Science said the evidence for many treatment claims described in online adverts and chat-rooms is unreliable and exploits patient's yearning for a cure or an improvement in their condition. While it is important that patients and consumers retain the right and the freedom to decide their own treatments, doctors and scientists wish to highlight the dangers of accepting pseudo science accompanied misleading claims and optimistic testimonials.

Managing Director of Sense About Science, Tracey Brown, said they have been contacted by "so many people exhausted from the pressure they feel to try advertised treatments, dietary regimes and exercises." She said one man described:

"How the last years of his wife's life were spent endlessly pursuing new treatments, from goat's 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," she added.

Phil Willis MP, Chair of the government's Innovation, Universities, Science and Skills Select Committee described the guide as "an inspired attempt to empower patients to evaluate so called 'miracle cures' with evidence based advice".

"The cruellest deception for a patient with chronic illness is the promise of a cure based on empty hope not evidence," said Willis.

In the introduction to the guide, Dr Aarathi Prasad from Sense About Science and Dr Laura Bell from the Multiple Sclerosis Society, explain that the 16-page guide draws on common enquiries they have received, what patients have said they found useful, and answers that doctors and scientists have given to questions about new therapies.

At the heart of the guide is a clear description of how clinical trials work and the regulatory framework around drug development, testing and marketing.

The guide suggests questions to ask yourself when wondering if an advertised treatment is reliable. For example:

• Have results been independently researched?
• Have the results been repeated in another study?
• Has there been a clinical trial?
• Has the trial been published in a scientific journal?
• What is the treatment licensed for?

For many people the hope that a cure can be found for themselves or their loved ones is very strong and the abundance of media coverage on new experimental treatments is mind boggling. How does one interpret this in a way that is meaningful to the patient? The guide contains some useful pointers, such as:

Because it works on mice it doesn't mean it works on humans. Ask yourself: what stage of research is the new treatment undergoing? Has it reached stage III of clinical trials and when is it going to be tested on humans? In the end, the trials may find that for humans, the risks outweigh the benefits. Also, only 1 out 10 promising new treatments make it through clinical trials.

Be wary of websites that use news reports to back up scientific claims. Ask yourself: where are the references to the study or trial being published in a scientific journal? Also, a report of what someone said at a conference is not the same as a study published in a peer-reviewed journal.

"Natural" products can interfere with prescribed medication. The guide refers to the comments of Dr Andrew Green, a GP, who points out that when he asks patients what they are taking for a condition they often don't report it if they consider the product to be "natural". Some web advertising encourages the idea that if a product is "natural", it is OK to take it as well as the prescribed medication. But sometimes alternative therapies can interfere with prescribed treatments and cause harm.

"I've Got Nothing to Lose By trying It."
Sense About Science, London, 2008.

Click here to download the guide (PDF).

Sources: Sense About Science.

Written by: Catharine Paddock, PhD.
Copyright: Medical News Today
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