Evidence matters to the public

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Putting evidence at the heart of policy and practice. 26th - 28th September.

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Plant Science Panel

Insecticides, biofuels, GMOs …

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'The Ugly Truth'

by Tracey Brown, director of Sense About Science

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Patient stories

Fiona is undergoing medical treatment for breast cancer. She is angry about the way people take advantage of patients: When she sought nutritional advice to help her recovery, instead she was offered a course of expensive, unproven treatment based on spurious diagnoses.

“I went to the nutritionist because I wanted advice on how to prepare food that might help my recovery from cancer. I had no intention of replacing these changes in my diet with conventional treatment. I have already had 7 courses of chemotherapy and have surgery coming up, and using complementary therapies such as reflexology, massages and yoga have been a part of my overall treatment. I was feeling very optimistic and hopeful that seeing a nutritionist would do no harm and could only be a positive experience.

When I went for my appointment the nutritionist directed me to have a seat, went through the diet sheet I had filled in and asked me a few questions about my health. Then he used two machines – I found out later they were called an Electro Interstitial Scan (EIS) and Oberon scanner – where he placed huge headphones over my head after asking me to remove all metal jewellery. He left the room each time he did a scan.

Going through the findings of these scans the nutritionist told me I had chlamydia, hepatitis, parasites in my stomach, that there were issues with my colon, all sorts of flu viruses, and a host of other illnesses. I think, for me, the most traumatic part was that – more than once – he mentioned HIV. When I asked if he was telling me I had HIV, he was dismissive and said it was nothing – and that mothers passed HIV on to their children all the time.

I was upset and struggled with the rest of the consultation, but the nutritionist did not seem to care. He told me his programme lasted for 3 months and would cost £600. Before I left I felt so helpless and hopeless that not only did I pay for the consultation, but also made a down-payment on the programme. I left feeling that I might as well die if all these things were wrong with me – I was surprised I was still alive. I went home feeling alone and did not sleep, preoccupied with the idea that I had to get myself medically tested for all these diseases.

Luckily I had an appointment to see my oncologist the next day and I told my nurse everything. I could not stop crying: I just could not believe that trying to get help with nutrition instead left me feeling that my life was over. I felt as if, apart from fighting breast cancer, I now had to fight HIV too. I left the nutritionist appointment feeling utterly powerless. I hope that other vulnerable people who are suffering emotionally do not have such a horrible experience when they go see someone who they think will help them.”

 

Anne-Louise Crocker has two children with autism and has challenged the lack of evidence behind many alternative treatments people have offered her.

“Autism is one of those conditions, as yet not much understood by medical science, which just naturally cause a vacuum into which rushes every type of quackery.”  

"Since my older daughter was diagnosed 10 years ago, I've been urged to try all manner of "miracle cures" from chelation (removing heavy metals from the body) to oxygen chambers, from exclusion diets to injections of pig hormones. None of these have any supporting evidence, but they are not often heard of outside the autism community and therefore not challenged by scientists. Many parents will try them on the "what harm can it do?" principle (though some can be harmful) - and of course parents whose child has just been diagnosed generally know very little about autism and are especially vulnerable to snake oil salesmen.

In the dark days following diagnosis, parents feel an overwhelming urge to find a solution, to “fix” their child’s autism. Most of us try some interventions, learn what can be useful and how to make the best of what we have. Some parents, however, become obsessed with “defeating” the autism: They pour huge amounts of time, energy and money into trying every available “treatment” often all at once, and are determined that their child will go to mainstream school and be “normal”. I admire their energy and commitment. However, I’ve now observed many of these families over a period of 10 years. The outcome for most of them includes: exhaustion, breakdown, divorce, money problems, depression, children (now adolescents) miserable and stressed with the effort of trying to fit in, and parents usually in a permanent battle with the school. I’ve yet to come across any family which has achieved a “cure”: the children are still autistic.

Why is evidence important to me? Although I've always been a sceptic, I did not pay much attention to these matters until my children were diagnosed autistic. I was introduced to another mum with an autistic son who was very helpful, and very keen on trying every "treatment" going. There seemed so many of them it was overwhelming, and all were endorsed by parents willing to swear that they made a difference. One of the first things that made me suspicious was the way that people promoting these "treatments" (collectively known as DAN doctors, for "Defeat Autism Now") seemed to recommend them all with equal enthusiasm, despite the fact that they were obviously based on different, and quite contradictory, ideas about what was causing autism: Some based on the idea that it is heavy metal poisoning, some that it is immune system failure, or gut damage caused by the MMR vaccine and many others. And yet they seemed to urge parents to try all these different approaches, all at once! Even if one of them was right, how would they know which one?

There is more help and guidance than 10 years ago (the Research Autism website is very good), but we still need a lot more hard evidence. I've found that however diverse these "treatments" may be they all have certain things in common. Some things that should set alarm bells ringing:

  1. They all say they are offering "hope" (implying doctors or organisations such as the National Autistic Society are too negative)
  2. They all say that they listen to parents and trust parents' instincts (suggesting that anecdote is more valued than science)
  3. They are all extremely cagey about the cost and will never tell parents up front what it will be (but often offer to arrange finance packages, or otherwise "help" parents to find the money)
  4. They all exaggerate how bad it is to have an autistic child (parents face "heartbreak" every day, children are "lost", their health is a "train wreck", they need to be "recovered"). I don't find that to be the case with my lovely, loving children!"


Sarah* has asthma, and has struggled with people trying to stop her using medication for asthma attacks, suggesting non evidence-based alternative treatments instead.

“While having an asthma attack at university, a fellow student tried to stop me using my inhaler. They suggested that instead I should drink several glasses of water, explaining they had attended a first-aid course. I thought this sounded like potentially dangerous advice, and challenged them about both the idea and the type of first-aid course they claimed to have attended.

It turned out that they hadn’t attended a first aid course, but had only seen a YouTube video about asthma first-aid which had convinced them about this alternative approach to managing the condition. When I looked up the video, I found it was professionally produced and used a medically plausible name, adding to its authority. However, along with the potentially dangerous advice to avoid using one’s inhaler in the event of an asthma attack, it suggested other methods which are seemingly against medical guidelines.”

*This is not her real name; provided anonymously


With long-term, degenerative conditions such as MS, patients face a particular struggle with clinics trying to offer alternative treatments such as unlicensed stem-cell therapies.

Belinda Rogers has MS

“There are many very shonky clinics promoting stem cell therapy so be very, very cautious. The worst places are offering it in the form of an injection of "stem cells" straight into the spinal cord. Not only does this carry a very high risk of infection but the contents of the injection are usually completely bogus. Sadly there are many charlatans out there who will unscrupulously prey on vulnerable people and sell all sorts of quack cures.”

Person with MS who wished to remain anonymous

 “If you don't go through your neurologist, but instead sign-up with a commercial organisation that claims to have had some success with stem cell therapy, I'm afraid I think you're at risk from crooks and charlatans. It's still very definitely at the research stage, and any organisation willing to take your money in return for what they claim is a safe and proven therapy is acting unethically, in my opinion."

 

There are many costs to unproven treatments – financial, emotional and to patient’s health. 

Christine has a thyroid condition
[Christine features in the guide] 

“I was being treated for a thyroid condition and consulted an alternative private ‘thyroid doctor’ in 2009 because of muscle problems. He prescribed ‘adrenal glandular’ tablets after a saliva test and told me to reduce the thyroid medication which I had been taking for 12 years. I was in a lot of pain and was bedbound for weeks and had to rely on paid carers and kind friends to look after me, as I live alone. It cost me a whole year out of my life, not to mention the huge financial cost of paying for carers for months, plus the cost of useless and misleading saliva tests. I am now seeing an NHS consultant and my health has improved although I still have muscle problems and need a wheelchair to get around. My advice is NOT to trust anyone outside of the properly accredited medical profession. Don’t make my terrible mistake of trusting other people’s recommendations of ‘alternative experts’.”

Charlie Fletcher has motor neurone disease
[Charlie features in the guide]

"Being diagnosed with MND and confronted by the stark reality that there is no cure and limited medications available, was a hard pill to swallow. To then be bombarded by the media with advert after advert of extraordinary treatments and radical cures was overwhelming. Those with long-term illnesses tend to have a heightened sense of impending doom and a desperate need for hope so it is not surprising that many are swayed by these claims. I will admit that at times the little voice in the back of my mind suggests I might be overlooking the answer I’m after, but as a natural sceptic I am not likely to be tempted unless there is substantial evidence to support these theories.  

Whilst I can appreciate the draw of untested drugs and alternative therapies, I am not about to start licking trees on the off-chance. However, medical research is an integral part of the search for possible treatments for diseases like MND and I am fully supportive of the incredible work being done. In my opinion, participating in clinical trials of drugs and methodologies is beneficial in the development of our knowledge of the disease and eventually a cure, and therefore, is something for which I would willingly offer my assistance.

It is often difficult to separate the head from the heart, particularly for family and friends who are naturally driven by their need to make things better. The passing on of unlikely remedies and anecdotes for seemingly successful treatments, in my personal experience, is more of a hindrance than a help. Following all this advice can be exhausting, time-consuming and expensive, but more importantly it can create false hope, which can have a devastating effect especially when something doesn’t work.

For many people the available drug for MND doesn’t make a huge amount of difference to the symptoms and in my case the side-effects were so severe that I couldn’t continue taking it. As far as I’m concerned, if the only drug that has passed its clinical trials and can be prescribed barely makes any difference, I am not likely to be convinced by the promises made by the latest, untested ‘miracle drug’."