February 7 2018 - 12:00AM
How sexism is hindering medical research
As recently as 1921, MS (multiple sclerosis) was erroneously
considered more common in men. By the late 1940s, a more even gender
split was presumed. By 1960 it was posited that women might actually
be slightly more prone to the condition. With the invention of the MRI
- a more objective diagnostic method - we now understand MS to be
three to four times more common in women.
So, back when physicians were making their diagnoses based on symptoms
rather than scans, why was MS being missed in women? The answer,
perhaps predictably, is that when men and women presented to
clinicians with similar symptoms, men were likely to be diagnosed with
an organic illness, while women were more vulnerable to a misdiagnosis
Popular late 19th and early 20th century treatments for MS involved
antibiotics, syphilis medication or blood coagulants, while hysteria
was treated with vibrators (yes, vibrators), hypnosis, or, if you were
very unlucky, an insane asylum, so regardless of diagnosis, no one was
receiving effective medical care. The gendered assumptions would have
had a social impact, however, and indicate that men were historically
considered more reliable as witnesses to the functioning of their own
bodies than women.
As well as being a cautionary tale on condescending, paternalistic
medical approaches to women, misperceptions about the male to female
ratio of MS have had implications for medical research. Sex disparity
in an illness can provide a starting point for unravelling the
mechanisms behind it, and scientists now believe that high levels of
testosterone may be protecting men from the disease.
"This is why it's vital to study sex differences in research," says
Melissa Brown, PhD, the lead researcher on a recent study from
Northwestern Medicine demonstrating that testosterone causes a cascade
of reactions in male mice. These eventually prevent the development of
the immune cells which attack the myelin in people with MS.
It's a discovery which could never had been made had we continued in
the belief that MS was more common in men, which begs two questions:
How much earlier might this discovery had been made if women had been
diagnosed correctly from the start, and what gendered assumptions are
we still making that might be standing in the way of similar
My own condition, ME/CFS (also called myalgic encephalomyelitis or
chronic fatigue syndrome), is, like MS, up to four times more common
in women and shares other characteristics such as immune, cognitive
and gut dysfunction, intermittent paralysis, fatigue and chronic pain.
ME/CFS was labelled hysteria as recently as 1970 by two psychiatrists
whose logic went: "there is little evidence of organic disease
affecting the central nervous system and epidemic hysteria is a much
more likely explanation. The data which support this hypothesis are
the high attack rate in females compared with males."
The paper they published had a significant impact on the research that
followed, with scientists focused on discovering biological causes
finding that their funding had dried up and governments prioritising
research into psychiatric interventions (research now being held up to
unfavourable scrutiny by the scientific community).
As it was with MS, new technology is now unravelling the biological
mysteries of ME/CFS. However, it was only last year that the CDC
finally removed its recommendation that patients engage in psychiatric
interventions. Those interventions remain the standard in Australia
with claims for the Disability Support Pension and NDIS routinely
rejected if applicants have not engaged in (often) expensive, debunked
People with ME/CFS are not the only ones impacted by the ongoing
dismissal of women's perception of their own health.
In her paper for the Berkeley Journal of Gender Law and Justice "The
Resurrection of Female Hysteria in Present-Day ERISA Disability Law"
lawyer Cassie Springer-Sullivan states: "Although I represent women
and men with many different disabilities, I have been surprised to
find that many of the disabled women who come to my firm seeking legal
representation suffer from illnesses that are typically labeled
"women's illnesses," such as fibromyalgia and lupus … I believe that
this is because disability insurers often presume (incorrectly, in my
experience) that women suffering from these types of illnesses are
magnifying their symptoms or just have a low pain tolerance."
In addition to saving money for insurance companies, the widespread
downplaying of women's pain continues to result in delayed diagnosis
and treatment. Upon presentation to an emergency room it still takes
women 16 minutes longer than men to receive an analgesic for acute
abdominal pain. A diagnosis of endometriosis, a painful condition
impacting women's reproductive organs, still takes a whopping average
of 7.5 years from the time symptoms first present, as complaints are
consistently attributed to normal menstrual function.
While women with a variety of ills may find themselves subject to
dismissive assumptions about our experience of pain, it's important to
note that hysteria itself is not just a relic of a less enlightened
historical medical practice. It's gone through a facelift and a name
change, but people who present with unexplained neurological
complaints may still be diagnosed with conversion or somatoform
disorders, the assumption being that if current technology can't find
the cause, symptoms must be psychological.
It's estimated that women are up to 10 times more likely to receive
the diagnosis than men.
I wonder how this will be viewed next century.