Pseudoscience exacerbates the burden of disease
Victims of ME deserve better than dopey Dragons and ear seeds
A fiery torrent has been unleashed into the Dragons’ den. The BBC show where aspirant British entrepreneurs pitch their ideas to multimillionaire business magnates (the “Dragons”) received nearly 500 complaints to the UK’s communications regulator, Ofcom. In an episode broadcast last week, would-be tycoon Giselle Boxer told the dragons that a mixture of “diet, acupuncture, Chinese herbs, and ear seeds” had cured her ME. Launching the latter as “Acu Seeds” — an idea which sends shivers down the spine — Ms. Boxer hoped her product would help others harvest the same health benefits.
Captivated by her “journey”, in a first for the show, Ms. Boxer secured offers from all six of the dragons but ultimately picked Steven Bartlett as her millionaire mentor. Clearly a deep thinker, Ms Boxer explained that it had been forecast (in tea leaves or a crystal ball?) that she would “meet a man called Steven and that he was going to be really important.”
But this extraordinary extrasensory revelation would not be the triumphant denouement of the Dragon’s Den episode.
Ms Boxer’s pitch turned out to have a more complex backstory than it appeared. She later confirmed that BBC producers had recruited her to take part in the show.
Even if this could be defended, more damning was the deluge of complaints about her product claims. Objections poured into Ofcom from patients with ME rejecting the preposterousness of any such treatment curing their illness. Some doctors, supporting the charity Action for ME, weighed in too, and even the BMJ [British Medical Journal] covered the story. Initially, the BBC defended the show, but by Monday had edited its content.
Leaving aside spiritual omens and dopey Dragons behaving more like sheep, a more pressing concern is: why has this beleaguered patient population been the butt of so much balderdash?
ME or “myalgic encephalomyelitis,” sometimes referred to as “chronic fatigue syndrome” is a condition that has been the subject of considerable naysaying, cynicism, and outright ridicule for decades. ME is seriously maligned — in Dragon’s Den speak, we might say it has a medical “branding problem”.
Yet underneath it all, the illness is no superficial matter. For sufferers and their families, it can be devastating.
The condition appears to be triggered by infections, though for many the cause is not always clear. Some people are so badly affected, they are left bedbound, housebound, with many living in abject pain with little energy to devote to even the most mundane and basic of everyday tasks. Patients may have underlying immune, genetic, or physiological vulnerabilities that still remain poorly understood.
“Long Covid” could well be ME by another name. A glimpse of Derek Draper, the husband of GMTV presenter Kate Garraway, who recently died after protracted and dangerously ill health following COVID-19, may help more of us to visualise just how severe post-viral illnesses can be.
Perhaps in part because the causes and susceptibilities to ME have been so poorly understood, patients have been subjected to a long history of shoulder shrugging, finger pointing, or outright contempt. Certainly, studies worldwide demonstrate that many doctors would do anything for these patients. But research sadly shows that plenty of others – including medical students – are all too quick to discredit patients, viewing them as “heart sinky”.
Worse even than being subtly dismissed by doctors, patients say the varieties of disbelief they experience cut the deepest. Together with my colleague Dr Keith Geraghty of the University of Manchester who is an expert on the condition, we have conducted several studies into the treatment of patients with ME. In our research we found patients are perfectly aware of this labelling by the public, clinicians, and until lately, the mainstream media — they are very well aware they are perceived as malingerers, fakers, or just plain bonkers. Many also recognize that if they get annoyed by this and stand up for themselves, the labelling only intensifies.
For many patients, however, the most offensive suggestion comes from those doctors donning the stethoscope equivalent of a dog-collar and who patronisingly, if well-meaningly, insinuate that their symptoms are psychosomatic and “all in their head.” This is the idea that patients’ agonising ill-health is caused by their mental state.
Yet, dogmatically adhering to pet theories, and allegiance to their own ability to help, many medics, including psychiatrists and clinical psychologists have peddled “cognitive behavioural therapy” as a method to shunt these apparently hapless patients out of “illness mode.” Another proposal is that patients with ME should gradually incorporate some physical exercise into their routine to get their body moving with the goal of alleviating their symptoms. To paraphrase Sheryl Sandberg, the former COO of Facebook, the idea here is that patients simply need to “lean in to being healthy”.
Still, some readers might think these suggestions sound reasonable — like common sense. Regrettably, common sense doesn’t always cut nature at its joints. Mother nature was not an overbearing parent whose primary goal was to mould us into truth-seeking scientists. Evidence has the potential to corrupt our favourite hunches and hypotheses.
When researchers rigorously apply the highest standards of evidence to these apparently common-sense practices, both lines of treatment are spectacularly uncompelling. For example, following open access to the “PACE trial” — a 5-year UK-government funded clinical trial — research revealed that psychological treatments and “graded” exercise offered next to no benefit, and might have harmed some people.
Our Darwinian brains are not always scientifically correct. Sometimes we prefer to blame or censure certain behaviours or presentations of sickness instead of understanding them. This is especially true when conditions are currently medically unexplained or when causes are invisible to our naked eyes.
Like the rest of us, doctors are human. Relying on emotional biases — including negative ones — physicians can sometimes substitute careful clinical reasoning for shallow, quick-and-dirty judgments. This doesn’t excuse doctors and the medical community — far from it — but it is certainly one reason (among many) for the near universal disparagement and stigmatisation faced by the ME patient population around the world.
And partly because people with ME haven’t been a priority, comparatively limited clinical research has been conducted. Consequently, in a hellish catch-22, medicine has had very little to offer them. Patients in need tend to be desperate, and open to giving anything a go: cue Dragon’s Den and Ms Boxer with her ear seeds.
The truly disappointing thing about this episode wasn’t the gullibility of the Dragons, nor was it the impulse of the BBC to defend its show. Instead, the episode was a sad reminder that ME has borne the brunt of fads for a very long time. Let’s hope for an alternative ending where Ms. Boxer’s ear seeds bring some attention to a group of patients who have had enough of bunk medicine.
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