How illnesses are categorised needs a radical rethink says former consultant neurologist Jules Montague
The Times
Julia Llewellyn Smith
Gerry Gajadharsingh writes:
“I think many patients assume that the diagnosis/label that they may have been given by their doctor to account for their symptoms is correct. In my experience this is often not the case, but I admit my patient demographics are different, because I tend to deal with complex health problems, patients with ongoing problems, despite various diagnoses and interventions from a variety of other clinicians.
Diagnosis is often not easy, especially with many patients presenting with symptoms that don’t fall easily into the standard medical/disease paradigm, that doctors tend to be trained in. It is thought the approximately 10% of patients’ have iatrogenic problems (problems caused by medical intervention), 10% are thought to have defined pathology, diagnosed by history, clinical examination, blood tests imaging et cetera, with the remainder thought to have functional problems including so-called “medically unexplained” symptoms, that is a lot of patients.
Another neurologist Dr Suzanne O’Sullivan published an excellent book several years ago and came to similar conclusions, as this particular neurologist, also incidentally from Ireland.
I’ve highlighted below, a couple of very powerful paragraphs from the article
“Without that answer (the diagnosis) you feel you haven’t been endorsed or legitimised by the medical establishment — that you’ve been forgotten about by society — and that can sometimes be more dangerous than the diagnosis itself
Yet what the Irish-born Montague, 42, increasingly came to realise was that an unreliable diagnosis was often far worse than no diagnosis at all. She discovered that some diagnoses generally accepted by the medical community are, in fact, dubious and can have dangerous consequences.”
Why is this? It’s because with a diagnosis, whether it’s accurate or not, comes treatment and from a medical perspective, this is usually in the form of medication or surgery, it’s likely that this is what makes up the majority of the 10% of iatrogenic cases presenting to GP practices.”
One of the most distressing periods of my life was five years ago, when my youngest daughter, who was nine, fell ill with a mysterious gastric complaint and missed nearly a term of school. Dozens of visits to the baffled GP led to her being put on a six-month waiting list for an NHS gastroenterologist. We had no health insurance, but ended up spending a fortune on private medics, who — although more helpful in tone — were puzzled too.
The lack of diagnosis, meaning no pathway out of the misery, was infuriating. I spent hours googling her symptoms and thousands of pounds on quack healers and dubious remedies in an attempt to cure her. Jules Montague, a former consultant neurologist at the Royal Free Hospital in London, who left medicine last year to become a writer (although she graciously declines to bad-mouth her past career), understands how vulnerable we felt.
“A diagnosis gives you legitimacy and validation, it allows you to talk to your family and friends, who can then go, ‘I know someone who had this and this helped them.’ Without that answer you feel you haven’t been endorsed or legitimised by the medical establishment — that you’ve been forgotten about by society — and that can sometimes be more dangerous than the diagnosis itself.”
Montague, who’s engaging and witty — so much so that I rather regret her loss to medicine — met many similarly frustrated parents while researching her latest book, The Imaginary Patient, about diagnoses. These were mainly people convinced — usually by Google — that their children had paediatric autoimmune neuropsychiatric disorders associated with streptococcal infections (Pandas), a highly disputed condition in which children suddenly develop obsessive-compulsive disorder and/or tics. Doctors were often unwilling to rubber stamp this diagnosis.
“Parents I’ve met, and other advocates of the diagnosis, believe people with these symptoms should get antibiotics and sometimes heavy-duty drugs that modulate the immune system, that would be used otherwise for chemotherapy. People who are less supportive are more interested in this purely being a psychiatric diagnosis and say these kids should be getting therapy and sometimes psychiatric drugs,” Montague says.
Even hinting that a condition may be all in the mind can make sufferers and their families angry. Montague is intensely aware of this and is braced for a backlash for simply having addressed the issue. “I struggled writing the book,” she admits. “Many times, I walked around the block, asking, ‘Will I go ahead and do this?’ ”
Yet what the Irish-born Montague, 42, increasingly came to realise was that an unreliable diagnosis was often far worse than no diagnosis at all. She discovered that some diagnoses generally accepted by the medical community are, in fact, dubious and can have dangerous consequences.
“I always believed that diagnosis was the quintessential tool in medicine, that there was an authenticity to it, a universal approach to truth,” she says. “But then I began to think: ‘Hang on, maybe diagnosis is also doing harm to the people I’m trying to help.’ ”
This idea was planted during one of her annual stints volunteering in Beira, Mozambique. A sixty something woman, Joyce, was admitted to the ward with symptoms including weakness and dizziness. Joyce’s husband said the village healer had declared her possessed by the spirit of a soldier killed in the country’s long civil war and was planning a ceremony to help it to depart her body. Montague saw signs of what in the UK would be called post-traumatic stress disorder (PTSD), a legacy of Joyce’s conscription as a forced labourer during the civil war.
“I began to wonder if one label was more valid than the other,” she says. “Spirit possession has no scientific markers, but nor does PTSD.” In fact, PTSD was a label veterans fought for after the Vietnam War, when some of their outraged fellow citizens were calling them “psychopaths” and “baby-killers”. But in this very different culture, the term spirit possession “spoke” to Joyce and her community’s experiences. “I began to wonder how a construct I had learnt to think of as relatively static could vary so dramatically according to religion, ritual and region,” Montague says.
As her research continued, Montague saw how forces such as religion, sexism, racism and commerce had played their part in shaping the tool clinicians thought of as “scientifically objective”. History showed how diagnoses taken as gospel a century ago were patently laden with the prejudices of their times. Take “spermatorrhea” or excessive discharge of semen outside of marital intercourse, said to be the root of everything from bloated faces to general weakness — a condition that preoccupied the Victorians, with cures suggested including castration and circumcision.
Then there’s “chlorosis”, a tag frequently attached to young women in Renaissance times with symptoms such as melancholy, constipation and a “capricious and depraved” appetite, the cure suggested to “live with a man and copulate”. Today, women with similar symptoms may hear that they have an eating disorder and/or depression.
If verdicts such as this seem hilariously archaic, Montague reminds us that until 1990 homosexuality was classed as a mental disorder by the World Health Organisation, with its 1968 manual categorising it as “sexual deviation” alongside exhibitionism, fetishism and sadism. It was a huge barrier in the LGBTQ community’s fight for recognition and equality.
Montague is apprehensive about the Metropolitan Police’s potential reaction to her chapter on “excited delirium”, a condition cited since 1985, mainly in academic reports, but not included in most international classification systems, including that of the World Health Organisation. This state — characterised by rapid breathing, profuse sweating, superhuman strength and an elevated body temperature — leading to cardiac death after a violent struggle is by far most commonly applied to black men under police restraint, by medical examiners working with law-enforcement officers.
In the UK excited delirium has been linked, mostly uncontested, to about 24 deaths since 1996; in the US it’s cited in an estimated 800 deaths a year, most famously in the trial of the police officer Derek Chauvin for the 2020 murder of George Floyd, Chauvin’s defence suggesting that Floyd had “superhuman strength” when under police arrest. “I think it’s been used to distract from or conceal deaths at the hands of law enforcement,” Montague says.
She’s equally sceptical about “cannabis psychosis”, a condition that, according to one study of psychiatric admissions, is attributed 95 times more commonly to Afro-Caribbean patients than to white patients and was used by some to explain the 1980s riots in cities such as Birmingham, with no attempt to examine the social issues that might lie behind such protests. Yet there’s no British medical consensus as to exactly what constitutes the diagnosis.
Often, if a psychiatrist identified a patient as psychotic and found that they’d used cannabis the label would be slapped on them, many times resulting in a lifetime’s treatment with tranquillisers. “There was no justification for the disproportionate application of this label to black men and yet it sanctioned the harsh medical interventions that followed,” Montague says. Today the diagnosis has largely fallen out of fashion, but she’s concerned by the rise in black boys with “oppositional defiant disorder”, seen as “hostile, vengeful, enraged and insolent”, a verdict that, Montague says, “amplifies the false narrative of ‘black and dangerous’ ”.
Unsurprisingly, big pharma has played a part in pioneering many new diagnoses. For years, many people suffering from fibromyalgia, which causes pain all over the body, struggled to be taken seriously.
“Initially the diagnosis was dismissed — even the editors of the main rheumatology journals called it a myth,” Montague says. “Then Pfizer championed a drug it was already making, called Lyrica [with the generic name pregabalin], now for fibromyalgia. Pfizer had teamed up with the National Fibromyalgia Association in the US and created public adverts and helplines. Before, fibromyalgia was a very lightly researched area, now it became heavily researched. Within a couple of years, it was outselling Viagra and discussed in wider circles. People like Lady Gaga were saying they had fibromyalgia without their claims being dismissed in the way they would have been 20 years previously.”
Yet, Montague cautions, “just because you champion a diagnosis and suggest a drug, doesn’t mean that it’s risk-free.” Studies show that only a minority of patients benefit from pregabalin, while others show a possible link between drugs such as pregabalin and suicidal behaviour and since 2019 the drug has been a controlled substance in the UK. “So, it would be wrong to take the line [that] the pharmaceutical companies have gone in full of altruism.”
Montague is clear that her book “certainly isn’t a takedown of the medical establishment. I don’t want people to lose faith in medicine, but we do need to think how we fix diagnosis.” She suggests more clarity surrounding vested interests and (in the context of a better-funded NHS) an annual GP “de-diagnosis appointment” where people can discuss whether the label still serves them.
In the case of my daughter, numerous procedures and — almost certainly unnecessary — drugs thrown arbitrarily at her illness failed to help. She ended up in hospital. The consultant generally considered top in his field saw her on his ward rounds. “It’s just one of those things,” was his best explanation. A week on a drip meant she gradually recovered. Years later we don’t know what happened. Sometimes, Montague says, we must learn to live with such lack of closure. “When I was training doctors, I was always a bit worried by the ones who were, like, ‘I’m all over this.’ I really respect a doctor who can say, ‘I’m not sure. I don’t know what’s going on.’ ”