Sense about Science ? equipping people to make sense of science and evidence
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- The Troubled Families debacle
- Citizen science in Europe: How to take a strategic approach
- It's silly to assume all research funded by corporations is bent
- The strange end of the Saatchi Bill
- Here's a plan to help the government to do better than its anti-lobbying clause
- Making the government's use of evidence more transparent
- Sense About Science at the METRICS conference
- Submission to the Independent Commission on Freedom of Information
- The vets are coming!
- The Times 10th October 2015
Posted by Tabitha Innocent on 26 September 2013
This is an article published on the Which? Conversation blog on 26th September. You can read the full piece here.
The internet’s rife with adverts and claims for clinics and treatments that offer ‘cures’. But if you’re tempted by untested claims you might want to think again, argues Tabitha from Sense About Science.
A new Sense About Science guide, written with patients and medical charities, explores the danger of untested cures on the web.
People facing long-term or chronic conditions can be desperately searching for anything that might help, and are especially vulnerable to exploitation.
Bombarded with unsubstantiated claims for ‘pioneering cancer treatments’, new diets and unfounded stem cell cures, patients can be left chasing false hope, exposed to crippling financial and emotional costs and risking serious harm to their health.
These treatment claims offer hope of finding something that will do more than conventional medicines can. But the evidence for many of them is unreliable.
Continue reading this article here.
Posted by on 25 September 2013
Over the last week a number of people have asked us to clarify what the Cancer Act is and how it relates to claims of ‘miracle’ cancer cures. Blogger Josephine Jones explains things here as well as giving some examples where complaints have been effective.
Guest blog by Josephine Jones
In the United Kingdom, it is illegal to advertise cancer treatments under the Cancer Act (1939). Breaches of the Cancer Act should be reported to Trading Standards. Details of your local office may be found here.
To my mind, it is impossible to overstate the harm that can be done by ‘miracle’ cancer cures. They can drive a wedge between patients and their families just when they need them the most. They can give false hope to the desperately ill, persuading them to live out their days on complicated and punishing dietary regimes. Some people with treatable cancers will even refuse surgery and medication.
The full version of this post gives some examples of when complaints have been effective. It also shows some of the ways in which those selling and promoting dubious ‘miracle’ cures have been able to sidestep the Cancer Act and continue to operate, whether it be avoiding mentioning cancer, holding private seminars, or even starting a new religion.
One way we can help protect people from these misleading and dangerous claims is by getting everyone to Ask for Evidence. Asking for evidence is crucial. The more people Ask for Evidence, the more individuals and companies will come to realise they will be held accountable for the claims they make.
Posted by Volunteer on 20 September 2013
David Colquhoun is a Professor of Pharmacology at UCL.
Sadly, there are still many conditions that medicine can treat only very imperfectly. For example, low back pain, and some forms of cancer cannot be cured at the moment. A diagnosis of cancer is pretty terrifying (I’ve had one). You are desperate and you’ll try anything. John Diamond, while dying of cancer, wrote “it is then that the ‘alternative’ or ‘complementary’ vultures start circling. This is their moment. This is where they come into their own, for there’s money in hope: the more desperate the hope, the richer the pickings”.
Obviously you should, Ask for Evidence: the problem is that quacks are good at using sciencey-sounding words and misrepresenting evidence. It’s easy to be fooled if you haven’t got much experience of assessing evidence. If you Google “cancer cures” most of what you find will be untrue. But there is also much good information. Try Googling “pancreatic cancer quack”, rather than “pancreatic cancer”. Go for sites that are generally reliable, like NHS Choices, or Cancer Research UK. Find some blogs which are critical of claims. If in doubt about the evidence, ask the people who write these sites. Don’t be impressed by long lists of initials after people’s names, and don’t rely on official regulators. Above all, beware of any site that tries to sell you something, or to refer you to expensive private treatments. Treatments that actually work (if there are any) are available on the NHS.
Ben Goldacre said, memorably, that alternative medicine can be regarded as a voluntary tax on the gullible. That’s true as long as you are one of the ‘worried well’. If you have a serious condition that’s potentially curable by real medicine, then alternative medicine might better be described as culpable homicide. Claims to cure cancer are illegal but are rife on the web. Claims to prevent or cure malaria, cholera, meningitis etc. with pills that contain no medicine (i.e. homeopathy) are common, but could cost you your life.
Some quacks may be genuinely deluded. But deluded or not, their main effect is to empty your wallet. In the process they may also make your last days a misery, by giving you coffee enemas and making you live on a vegan diet, no wheat, sugar or alcohol, and to live on five glasses of raw juice and two jars of sprouts a day.
Posted by Volunteer on 19 September 2013
Dr Indrayani Ghangrekar is a member of Voice of Young Science
A friend pointed out to me an article in The Sun that linked a number of foods as being effective at treating cancer, gout, stress and other health issues. Most of these claims seemed far-fetched, weird, or just plain incorrect but I didn’t know all the ins and outs about it so I decided to Ask for Evidence and find out!
The article had quoted a researcher and a few nutritionists, so I knew who to contact. A quick search and a couple of emails later and my ‘ask’ was done.
And it was a good thing I did ask - the researcher quoted in the article about links between nutrition and breast cancer prevention was rather upset. She told me she hadn’t said any of what was attributed to her in the article. The journalist omitted what she had said and instead, took details from a book she wrote in 2006, which was no longer relevant because further research had since been carried out. That’s how science works – new advances overturning old ideas. There was also an incorrect line that was from a completely different source. She felt being quoted as giving outdated information would reflect badly on her professionally, so, by asking for evidence, I brought this to her attention. She then took steps to ensure her colleagues knew she had been misquoted. She also patiently answered my questions and set the record straight – so I chalk that up as a big success for her, for me, and for asking for evidence!
One of the nutritionists mentioned in the article replied to me with links to the research she had referred to about how cherries can improve sleep and beat stress. These links were to scientific research that was behind a paywall, so I could only see a summary of the research and some of the graphs.
The study she referred to used concentrated cherry extract, so it's not clear whether eating cherries would achieve the same results or not. You might have to eat hundreds of them to get anywhere near the dose used in the research paper! Thankfully, as someone with a relevant research background, I was in a position to understand the paper. But that will not be the case for everyone who is evidence hunting. However, rest assured, there is plenty of guidance on the Sense About Science website and they also have a database of over 6000 specialists who are there to help you make sense of any evidence you might get sent.
It’s great to know that I can get answers by asking for evidence and that it makes a difference. And that help is at hand should I need it - I'm definitely going to do it again.
Posted by Volunteer on 19 September 2013
By Caroline Finucane, Health Editor at NHS Choices
Ridiculous remedies for baldness, snoring and everyday ailments are met with much eye-rolling here at NHS Choices, with the latest vaginal steaming as a cure for many ills really taking the biscuit.
But what we must take seriously is the ‘miracle cure’ exploitation that’s happening on a much darker level. Unscrupulous private clinics continue to promote their unproven therapies to desperate families affected by terminal illnesses; people who have exhausted every NHS treatment and believe there’s nothing to lose by trying it.
There is much to lose. You may remember the recent tragic story of 7-year-old Olivia Downie, who had a rare form of cancer and rapidly deteriorated after trying an experimental therapy from a Mexico clinic. Her parents were forced to appeal for money to fly her home, and she died within 48 hours of her return. Read the government warning I wrote about clinics offering unproven, unlicensed versions of photodynamic therapy.
It doesn’t stop here. This appears to be one of many questionable cancer therapies, and cancer patients are not the only target.
People with incurable brain disorders, too, are apparently paying large sums for phoney stem cell medical treatments (Read the news report).
The clinics get away with it as they’re based in countries whose regulations allow the provision of unlicensed therapies.
Ukraine, for example, has apparently become a world centre for untested stem cell treatments . “The shady ‘stem cell therapy’ industry is expanding across the world and is increasingly targeting behavioural and psychological disorders,” says Mindhacks. “Patients can fly in and have embryonic stem cells implanted in their brain to supposedly treat everything from Alzheimer’s disease to autism.”
You only need to read about the woman with kidney disease who tried stem cell therapy from a private clinic in Thailand to realise there could be nasty unknown effects from these experimental treatments, which have not been through the proper safety checks.
The national media hasn’t always been discouraging about unproven therapies. In the case of stem cells, newspapers have rightly embraced them as an exciting and promising area of medical science, but some have prematurely heralded them a “cure” for such things as blindness, deafness and Alzheimer’s disease. It’s no wonder people invest so much hope in them.
While the media continue to exaggerate the benefits of experimental therapies and well-meaning celebrities and charities help raise money to fund them, these ‘miracle cure’ clinics will continue to prosper and cause harm.
So I'm encouraging people to question sciencey-sounding claims and to Ask for Evidence. The more people Ask for Evidence behind claims they encounter, the more the scammers who exploit the gravely ill will be found out for what they are.