The human urge to help others is a laudable aspect of our nature as social animals. In an era of crowd-funding platforms and electronic transfers, appeals can rapidly tap into the spirit of human generosity and sponsor any number of excellent endeavours. But this generous spirit can be quite easily abused, especially when it comes to fundraising for healthcare.

Given the prevalence of cancer, it’s not surprising that those affected are frequently the target of outlandish and costly false cures. Wallace F. Janssen, historian of the US Food and Drug Administration (FDA), noted that at least one dubious therapy has dominated headlines every decade since the 1940s. These “cures” can be worse than merely useless; in some instances these interventions can be actively damaging or deadly. And whether borne of benign cluelessness or outright deception, these treatments are rarely free.

Based in Houston, Texas, Dr. Stanislaw Burzynski claims to treat cancer with a group of peptides he christened antineoplastons (ANP) way back in the 1970s, when he set up a clinic ostensibly for research. In the decades since the clinic was established, precisely no reproducible results have emerged. There are many problems with the research conducted by Burzynski’s clinic; Professor David Gorski provides an excellent overview of some of these.

Yet despite the numerous FDA warnings, scientific criticisms and myriad legal cases, Burzynski’s clinic is still a beacon of hope for many desperate people. The clinic has heavily promoted itself as capable of miraculous deeds, for which it charges a hefty fee - the American Cancer Institute warns that treatments at the clinic can cost upwards of US $7,500-10,000 a month (£5,600-£7580).



Sick people, their families and communities frequently raise hundreds of thousands of dollars for treatment there. The story of British toddler Amelia S is just one such heart-breaking account. Amelia was three years old when diagnosed with a brain tumour. The prognosis was bleak, and, understandably, her family looked for any hope they could find. Despite pleas from concerned sceptics, Amelia’s family began fundraising for her treatment, and aided by uncritical media coverage collected over £200,000. Initially, Amelia’s family were encouraged by the apparent improvement they witnessed in their daughter’s condition, and the clinic wasted no time in promoting the toddler as a success story. Her story even featured in filmmaker Eric Mercola’s uncritical documentary Burzynski: Cancer is a Serious Business. Swayed by the coverage, several other parents of sick children raised large sums of money for ANP treatment.

Sadly, Amelia’s improvement was illusory, and her condition deteriorated steadily until she passed away in 2013. The Other Burzynski patient group records many similar instances. No-one disputes that patients do, sadly, sometimes die, but but that they should be peddled false hope whilst being heavily burdened financially strikes opponents of the clinic as unforgivable.



Autism is another condition that attracts bogus treatments and dubious elixirs. “Treatments” range from unnecessary chelation therapy to what are essentially bleach enemas. The human protein GcMaf is often marketed as a miracle cure, and can set patients back somewhere in the region of €5000 (£4270) a month. It may also come with considerable risk, especially if patients have abandoned conventional treatment: in 2014, five patients died having undergone the protocol at First Immune Switzerland. The clinic was closed pending an investigation and remains closed, although the company’s website reassures potential patients that “we have closed our clinic to replace it with a better one”.

But perhaps the most pernicious treatments are those designed as interventions for syndromes that are not medically recognised. These include Electromagnetic Hyper-sensitivity (EHS), where sufferers believe they are adversely affected by electro-magnetic radiation. While EHS is psychological rather than physiological, the profound discomfort experienced by sufferers is very real. And because such afflictions are not medically recognised, hawkers appear to offer desperate sufferers the chance to relief or cure, offering everything from juicers to ludicrously implausible electro-magnetic shields.



Of all these maladies, Chronic Lyme Disease (CLD) is one that is currently attracting attention. Lyme disease is a common infection passed from ticks to human, and is usually easy to treat with a course of antibiotics. Generally, it quickly clears up, though in rare instances symptoms can persist for a few weeks after treatment, a situation referred to post-treatment Lyme disease syndrome (PTLDS). CLD sufferers claim that a range of varied and often debilitating symptoms can manifest after infection. Yet the symptoms of CLD are entirely subjective, and completely inconsistent - in many instances, there is no evidence that the sufferers ever had Lyme infection in the first instance. A 2011 New England Journal of Medicine review dismissed the existence of CLD alongside other discredited “illnesses” such as chronic candida syndrome and chronic Epstein–Barr virus infection.

Understandably, this dismissal by the medical establishment is rejected by illness advocacy groups, who in their determination to have a diagnostic label for their complaints can be somewhat militant. Indeed, the co-discover of Lyme disease, Prof Allen Steere, has been stalked, threatened and abused for refusing to substantiate self-diagnosed CLD, in addition to his refusal to endorse long-term antibiotic therapy - a treatment course shown to lack efficacy.

Unsurprisingly perhaps, the evanescent nature of a CLD diagnosis is a haven for snake-oil sellers, keen to dole out a diagnosis and supply lucrative alternative treatments. The lack of medical evidence for the very existence of the condition is, paradoxically, something of a boon for alternative practioners, who are therefore able to attribute practically any perceived malaise or symptom to CLD, and push any manner of dodgy cure.

These treatments can command a staggering price-tag; a recent campaign to raise €100,000 (£85400) for a CLD treatment was heavily covered in the Irish media, urging at least 10,000 people to donate €10 to save a life. Along with Prof David Colquhoun, a pharmacologist and fellow of University College London, I queried this particular case. We asked some questions regarding where the treatment was going to be carried out (ie. where the money was going) and discovered the clinic in question was the Sophia Health Institute in Seattle.

Further investigation revealed that this is not the first appeal to raise huge sums for CLD treatment, with many other similar appeals on numerous crowd-funding platforms. That any clinic would offer expensive treatment for an unrecognised ailment is a red flag. However, the situation becomes murkier still when one considers that the Sophia Health Institute is a naturopathic centre run under the auspices of Dr. Dietrich Klinghardt, a man whose medical reputation has been called into question by many sceptics and health bloggers, and whose Lyme disease treatment protocol makes for frankly worrying reading.



So why do these unproven treatments still find ready patients? Part of the problem is survivorship bias, where people are more inclined to focus on apparent success stories whilst overlooking failures. Dubious clinics exploit this effect, showcasing their apparent miracles whilst downplaying the much more informative failure statistics, creating an aura of effectiveness where there is none. But crucially, these clinics have commoditized hope. At its worst, this is naked abuse of desperate people.



Faced with this desperation, raising questions about the clinics or their methods, can trigger extreme reactions, even if compassionately meant. It is all too easy for patients and their supporters to interpret concern as contempt for the sufferer. The siege mentality has the effect of insulating clinics from criticism- precisely the environment in which exploitation thrives.



The depressing conclusion is that although the urge to help those suffering is laudable, the truth is that promises of miracle cures should be viewed with extreme scepticism. Raising money for such causes does not help sufferers one iota – it benefits only those with the audacity to push false hope at great expense.

