8 Tuesday May 17 2022 | the timesarts
O
ne 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.
After several visits to the baffled GP
she was 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 were equally puzzled.
The lack of diagnosis was
infuriating. I spent hours googling her
symptoms and thousands of pounds
on dubious remedies. Jules Montague,
a former consultant neurologist at the
Royal Free Hospital in London, who
left medicine last year to become a
writer, empathises.
“A diagnosis gives you legitimacy
and validation,” she says. “Without
that answer you feel you haven’t been
endorsed or legitimised by the medical
establishment — that you’ve been
forgotten about by society.”
Montague, who’s engaging and witty,
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 in the mind can make sufferers and
their families angry. Intensely aware
of this, she is braced for a backlash for
having addressed the issue. “I
struggled writing the book. 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 wasThe Imaginary Patient:
How Diagnosis Gets
Us Wrong by Jules
Montague is published
by Granta at £18.99that an unreliable diagnosis was often
far worse than no diagnosis at all.
“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 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. 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.”
As her research continued, she saw
how forces such as religion, sexism,
racism and commerce had shaped the
tool clinicians thought of as
“scientifically objective”. History
showed how diagnoses taken as gospel
were laden with the prejudices of their
times. Take “spermatorrhea” or
excessive discharge of semen outsideWhy your next diagnosis might
do you more harm than good
The categorisation
of illnesses needs a
radical rethink, an
ex-consultant and
author tells Julia
Llewellyn Smith
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. If verdicts such as
this seem 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.
Montague is apprehensive about the
Metropolitan Police’s potential
reaction to her chapter on “excited
delirium”, a condition characterised by
rapid breathing, profuse sweating,
superhuman strength and an elevated
body temperature — leading to
cardiac death after a violent struggle.
It 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 is
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. “I think
it has been used to distract from or
conceal deaths at the hands of law
enforcement,” Montague says.She is equally sceptical about
“cannabis psychosis”, which, according
to one study of psychiatric admissions,
is attributed 95 times more commonly
to Afro-Caribbean patients than to
white patients. Yet there’s no British
medical consensus as to exactly what
constitutes the diagnosis. And then
there’s “oppositional defiant disorder”,
seen as “hostile, vengeful, enraged and
insolent”, a verdict that, Montague
says, is used to amplify “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.
Fibromyalgia was a very lightly
researched area before; 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.”
Her book “isn’t a takedown of the
medical establishment”, she insists.
“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 GP “de-diagnosis appointments”
where NHS patients can discuss
whether a label still serves them.
In the case of my daughter,
numerous procedures and 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 still 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.’ ”I really
respect a
doctor who
can say, ‘I’m
not sure’
Jules Montague is a
former consultant
neurologist at the
Royal Free Hospital
in Londontimes2