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How to Survive Fake News on Cancer Science


For Eileen O'Sullivan, diagnosed with breast cancer in 2013, was a catalyst for flooding extremely unscientific and often dangerous tips. An investment manager with an analytical mind began to search for information to better understand her potential life-changing state. But from the moment Eileen began to search the web, the wrong information was inevitable: "That's when all the templates begin," she says. "Before diagnosis, I have never heard of cancer treatment: herbs, supplements, diets, juices, pure nutrition, homeopathy, essential oils, or ads for alternative cancer clinics abroad. In any case, I did not look for them, but I got endless calls based on key words like breast cancer. I was also flooded with relatives and friends who came up with wonderful treatments – and also from other patients in chemotherapy and waiting rooms. "

As a cancer researcher who is deeply involved in science education, I can confirm that few subjects cause a rather emotional response caused by cancer. There is no family in the world that the disease will hit, and the word itself is enough to cause a sense of fear in the most difficult of us. Cancer is oppressive and ubiquitous: half of us, who are alive today, will experience a brush directly with her. Despite its ubiquity, it remains poorly understood and false circumstances can thrive.

Online dubious claims about cancer are widespread, ranging from definitive "medicines" to "conspiracy" claims to crush the "truth" about it. In 2016, more than half of the 20 most widely distributed cancer articles on Facebook contained medically discredited claims. And that's far from Facebook Wall Street Journal recently revealed that YouTube hosted accounts with thousands of subscribers who encouraged cancer treatment. Sullivan's skepticism gave her immunity to attract empty promises. But when she lost her mother from breast cancer, "I was left scared more vulnerable to pseudo-knowledge than I would have wanted to admit," she says.

Now he is a passionate advocate of patience, which discourages others from harmful falsehoods – a problem he sees as untenable. This dark estimate rings on the findings of dr. Roberta O'Connor of the Irish Cancer Society: "Practically all patients are exposed to wrong information, [coming] from well-meaning, misinformed loved ones to a multitude of resourceful and profitable resources in social media. "

A quick online search reveals an alleged treatment that goes from unclear scientific sound to deep esoteric. The incomplete list of the US Food and Drug Administration (FDA) has revealed more than 187, while Wikipedia's list of fake medicines ranges from "energy" to "spiritual healing". Other claims include hyperbaric oxygen therapy, cannabis oil, shark cartilage, ketogenic diets, and bicarbonate soda.

It is becoming more and more concerned that such fictions threaten reputable information. Macmillan Cancer Support was recently named by a nurse who specifically reveals online stories, which makes them Oncology Lancet comment: "How did the company come to this point where unproven interventions are selected from effective evidence-based treatment? Unfortunately, disinformation and, frankly, lies are widely spread and the same size as verified evidence. "

Similar concerns are also expressed by Cancer Research UK and Wellcome Trust. In particular, new patients are often targeted by those who promote cancer treatment, and although some of them are well-thought-out, but misguided, others are commercially directed. Sonya Canavan, the second survivor of cancer, found: "In the Breast Cancer Breast Cancer Forum I used to publish, I often saw that" patients "were publishing about all kinds of charlatans that turned out to be sellers traded for businesses.

This pseudoscience is exposed to vulnerable patients is not a new problem – cancer scams have been in place for decades, and the fight against them has been an impetus for the Cancer Law of 1939. The key difference now is the ease with which lies can be revealed. Cancer surgeon David Gorski, professor of surgery and oncology at the Wayne State University Medical School in Detroit, Michigan, and editor-in-chief of the blog Medicine based on sciencenotes that wrong information about cancer "is now more widespread for the same reason because other false information and conspiracy theories are so widespread – because they are so easily distributed to social media."

Regardless of whether it arose from the desire for help or bare charlatanism, the net effect of such misinformation is predominantly negative. Patients treated with unproven cancer treatment are more likely to refuse conventional treatment or postpone rescue interventions. This brings terrible costs; in patients who have opted for alternative approaches it is more than twice as likely to die in the same period as those who rely on conventional therapies. Worse, it is not unusual for the initiators of dubious information to resort to a panic over conventional therapy. Both radiotherapy and chemotherapy are often rejected as "poisons" that endanger life. Cancer is terrifying, and the promises of simple medicines can be appealing.

Stanislaw Burzynski in 1997

Stanislaw Burzynski in 1997 at a federal court in Houston, Texas, where he faced 34 allegations of fraud that had been rejected and 41 violations of the FDA's regulations, which did not allow the jury to reach a verdict. Photo: Pat Sullivan / AP

All false claims issue the same basic misunderstanding: cancer is not a monolithic entity, but a family with more than 200 known diseases. Because of mutations in the patient's cells, cancer is very complex and diverse. It is unlikely that one "magic sphere" of cancer could be in all its forms. The idea of ​​a healthcare product is attractive, but sadly wrong, and draws the attention of the klaxon to dubious science. Non-scientific interventions may nonetheless come with considerable price tags.

Stanislaw Burzynski, based in his Texas clinic, claims to be treating cancer with unique antineoplastic therapy. According to the National Institute of Cancer (NCI), although they have been functioning for decades, other researchers could not duplicate these results. Since its inception, the clinic has been subject to numerous FDA warnings, but continues to be encouraged as being able to heal patients. And this is not cheap – the US NCI warns patients that treatment costs more than $ 7,500 – $ 10,000 per month (£ 5,600-7,580) and says: "Evidence for the use of antineoplane therapy as a cancer treatment is not convincing. Controlled clinical trials are necessary to assess the value of this therapy.

Despite negative publicity, this is usually the case for Burzynski. If anything, mass financing may have made his clinic more popular. Instead of scientific evidence, it relies on patient statements to attract new customers, although in some cases it comes from already deceased patients – the fact that there is no promotional material.

This is contemptible, but by no means unique – there are many dubious clinics in the world promising the impossible prices that need to be cleaned. Last year, Irish television was investigated by researchers in Istanbul, who demanded great success with unconventional therapies. Patients were accused of more than 130,000 euros (116,000 pounds) and, according to everything, clearly in Turkey. According to the program, patients discovered that their cancer was noticeably advanced when they were scanned after returning home. Germany is also home to many unregulated clinics, which are presented as luxury health resorts, but promising treatment. These are supported by the velvety statements put up by international buyers, and treatment costs hundreds of thousands of euros – although there is no evidence of their effectiveness.

Such exploitation exceeds the direct victim, since mass financing is usually used to meet their excessive prices. Paper v British Medical Journal Last year, on the basis of data collected by the Good Thinking Society, it was found that at least £ 8 million have been raised in the United Kingdom since 2012 for unjustified or discredited cancer treatments. Michael Marshall, Project Director for the Well-Thinking Society, explained: "The amounts collected by massive funding are just the tip of the iceberg, with many patients taking loans, mortgaging their homes and spending their life savings. When these supposedly active substances prove to be of no benefit, families have left to deal with huge debts when they regret their beloved person.

In order to clarify the modesty of evidence for their claims, charity suppliers accuse the medical and scientific community of suppressing cancer drugs. This is not just a marginal belief – 37% of Americans believe that the FDA is doing just that. But the argument is pointless. This would require a huge conspiracy of hundreds of thousands of scientists and doctors who would maintain it – a script that is unlikely to endure.

In addition, if there were such a conspiracy, would not those who work in the field of cancer be also susceptible to its malignancy as anyone else? We all will lose our loved ones to cancer and succumb to it. The requirements for conspiring encourage distrust between patients and health groups.

Growth disinformation on cancer is part of a wider problem with online lies. Just like an equally dangerous explosion in anti-mythic diseases, cancerous lesions affect both our physical well-being and the public understanding of science and medicine. In the sea of ​​sound and rage, the distinction between reputable and disgusting is not always easy, but excellent resources are available to patients and their families. Well-studied Cancer Research UK guides and the US National Cancer Institute are enlightened and credible.

Like anti-vaccination, the myth of cancer is also growing on social media. There is a strong argument that these platforms have a moral obligation to remove groups and individuals who are propagating the wrong information. According to O'Sullivan, "Facebook, YouTube and Twitter lead the patient to the hole of the hole, many of whom think it is" doing research ". I believe that we can not stop those who claim to be false, but we can isolate and regulate those who require cancer, and that social media platforms are responsible. "

Due to the revival of measles, partly due to online anti-spyware activism, several social media platforms promised to massage their algorithms in order to reduce "fake news" of cancer. But this filtering is easy to circumvent. Business models of social media thrive more in engagement than in credibility, and the cynic can think that they do not have many reasons for regulating such content, unless it seems to be anxious. Regardless of whether the problem is the lack of ability or affection, the healthcare remains wrong. We urgently need to improve our ability to evaluate the avalanche of medical claims: this depends on our further well-being.

Dr. Robert Robert Grimes is a cancer researcher, physicist and scientific writer. Hellofirst book, Irrational Ape: why the wrong logic is in danger and how critical thinking can save the world t, will be published by Simon & Schuster v September

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