How long Covid exposes a key problem with Western medicine

Psychiatry
expert Alastair

Psychiatry
expert Alastair
Santhouse of King’s College London on the need for
urgent rethink about the interface between body and
mind

As I walked her up the flight of stairs to my clinic room,
Victoria* barely engaged with my small talk. I glanced back at her.
Above her mask, she looked strained, miserable, and I saw that her
reticence was because she was ready to burst into tears. I thought
one more question might have tipped her over the edge, so we
continued in silence until we reached the sanctuary of the
outpatient room.

The tears were not long in coming. She told me that early in the
pandemic, before Covid testing was widely available, she’d had
what was assumed to be a mild case of the illness. Her doctor
advised her to stay at home, which was the standard advice to
everyone at that early stage of the pandemic. For the next few
days, she lay in bed. A week passed, then two, and then steadily
the weeks turned to months.

“I had long Covid before it had a name,” she told me. Yet
even after it had a name, even after she had been assessed,
X-rayed, had an MRI and countless blood tests, she was little
better off. And even once people started talking about it, the name
“long Covid^[1]” offered no clues about
how this illness was to be treated, how long it might last, or what
the future would now hold for those with it. And so at each clinic
appointment – “Good news! Your lung function tests are completely
normal!” – Victoria began to feel more adrift. If they couldn’t
find anything wrong with her, how was this ever going to be
fixed?

This is a scenario that I have frequently seen over a long
career working at the interface between mind and body: a place
where the clean lines of diagnosis blur into the shades of grey
that constitute the real world. It is an area in which medicine
struggles to make sense of a person’s suffering, where patients
feel neglected and abandoned, and where opinion replaces evidence.
Instead of a cohesive pull towards a solution, there is confusion,
uncertainty and fragmentation.

The treatment of any illness starts with a conceptualisation of
the symptoms. What is causing the problem? Where are its origins?
Our ability to peer into the body, to examine its organs and
measure and make sense of the invisible elements in our blood, have
persuaded us that illness is nothing more and nothing less than a
bit of the body having gone awry.

Yet Victoria’s body had not gone wrong, at least not in any way
that was apparent to the increasing number of medical specialists
who had examined and investigated her. What did that say about her
suffering? She began to doubt herself, as surely as she knew her
family was beginning to wonder, too.

Medical purgatory

Stories like Victoria’s aren’t uncommon among the thousands of
cases I have seen over the years. Not all of my patients have had
long Covid, of course, but many have had one of the number of hard
to define illnesses, where a person’s suffering isn’t accompanied
by any abnormal test results. They inhabit that flat grey
hinterland, neither one thing nor another.

My own journey to this point involved a steadily increasing
understanding that medicine often does not serve patients like
Victoria well. Patients referred to me had often seen several teams
of hospital specialists with problems such as persistent pain,
fatigue, dizziness, unexplained abdominal symptoms and seizures
that were shown not to be epileptic. Following the law of
diminishing returns, each round of investigations brought smaller
and smaller yields, until a referral to a hospital psychiatrist
became the only card left to play.

A dawning realisation that things had to change struck me from
early on in my career. Back then, even as a sprightly junior doctor
specialising in internal medicine, I could not help noticing that
many patients did not benefit from medicine as it was being
practised. And so I found myself wondering if I could do more good
as a psychiatrist than as a physician in a general hospital.

Eventually, I worked my way up the career ladder, specialising
in the interface between medicine and mind – a field known as
liaison
psychiatry^[2]. More recently, I have
written about my experiences of how the mind and the body are
inextricably connected in a book^[3].

I remember seeing Finlay*, a young man whose life was put on
hold after he went to see his doctor complaining of dizziness. Over
the following months, he was passed around different specialist
departments including cardiology, ENT (ears, nose and throat) and
neurology. He was subjected to dozens of investigations, all of
which came back normal. He was no longer sure if he was really ill,
and found it hard to make sense of his situation. His employers
started to lose patience with him, and his relationship with his
partner came under strain. The doctors had moved on, but Finlay was
stuck. He was frustrated, scared and still dizzy, and like his
referring doctors, just wanted an explanation for his symptoms that
made sense.

I have lost count of the number of times a patient has wished on
themselves a serious illness, even one with a poor prognosis, as
long as it has clear investigative results. At least they would
then be able to justify their suffering and plan for the
future.

The problem is one of culture. Western culture has become so
steeped in its current thinking of the human body – a simplistic
mechanistic approach – that to suggest physical symptoms may not
always have a direct physical correlate in the body is, for many
patients, a provocation and, for doctors, something that is often
not considered.

In some respects, this is surprising, because Western culture
likes to think of itself as more open, inclusive and accepting of
things that fall outside the conventional paradigm. Yet this
openness does not often extend to healthcare, in which medicine’s
narrow view of health and illness continues to constrain its
thinking.

When a doctor is unable to find a clear-cut physical cause for a
patient’s illness, many will hear in this that their symptoms are
not quite real, their suffering suspect. Doctors can become
reluctant to even suggest that physical symptoms may not have an
obvious or demonstrable physical cause, for fear of the offence
that it seems to imply. One 2002 research paper^[4], published in the BMJ,
encapsulated the difficulties in the title: “What should we say to
patients with symptoms unexplained by disease? The ‘number needed
to offend’.”

Everything must make sense

The West’s present medical culture is a continuation of a
process that began in antiquity. It is a reflection of human
nature, the need to try to find order in the world, to delineate a
set of rules, so that the world around us makes sense. It gives us
a feeling of security. We want to explain and contain those things
that frighten us, such as ill health. This, in turn, leads to a
drive to simplify complex phenomena.

In some scientific disciplines, simplifying to a set of
fundamental rules is a perfectly legitimate goal. By doing so, we
have understood the relationship between energy, mass and the speed
of light, the structure of atoms, and much of the physical world
around us. But in medicine, the urge to simplify has nearly always
led to overly simplistic theories. These theories explain
everything and nothing at the same time.

Take, for example, the four humours
theory^[5] of medicine. It began in
ancient Greek times when Hippocrates and then Galen developed the
idea which, almost unbelievably, became the leading medical theory
for the next two millennia, with barely a challenge to its
legitimacy. It explained everything.

Misalignment of the four humours – black bile, yellow bile,
phlegm and blood – needed to be corrected to ensure good health,
and so poultices, emetics, blood lettings and a variety of other
benign, and not so benign, treatments were developed. It was a
unifying theory, at once elegant, simple and persuasive. Its power
was reflected in its longevity. And yet it explained nothing at
all. It was nonsense accepted as truth.

Our urge to simplify the complex has remained unchanged in
modern times. It is only the parameters that have changed.

The current conceit is of the body as a machine. A complex
machine, for sure, and one that needs a great deal of scientific
effort to explain its workings. We have made substantial progress
over the past half century, with a deeper understanding of the
workings of the body, from microscopic cellular function to nerve
cell transmission, from microbiomes to genomics. It has allowed us
to understand disease processes and offer treatments that could not
have been conceived of a century ago. Treatments like dialysis,
which has extended countless lives, and organ transplants, which
have been made possible by our understanding of the immune system
to prevent rejection.

Such achievements have been an undoubted benefit to many people,
and are obviously to be welcomed. Yet the understanding of the body
has not translated into an understanding of illness and health.
There is a ghost in the machine. Health, as experienced, is not
simply a reflection of whether our bodily machine is working as it
should. For many patient encounters, it’s not even close.

This is reflected in the many examples that we experience on a
daily basis. We know for example that depression commonly presents
with physical symptoms, such as headache or constipation, a finding
that appears to be consistent^[6] across different
cultures. Similarly, it is well known that placebos can improve
physical symptoms – in one study^[7] improving lower back
pain even when the subjects were told that they were taking an
inactive placebo tablet.

The case of psychiatry

As the West’s current model of medicine became the global
standard, it began to shape the way we thought about and treated
physical health problems. The potential contribution of psychiatry
to physical health problems in the UK was little considered before
the 1950s, with the speciality of liaison
psychiatry^[8] developing in the second
half of the 20th century. Even now, nearly all psychiatry is
practised in the community or specialist psychiatric hospitals,
rather than in acute medical settings.

In the general hospital, psychiatry is mostly to be found in the
emergency department, with the focus firmly on self-harm, suicide
attempts and extreme psychological distress. This means that where
patients have medically unexplained symptoms, or long-term medical
conditions in need of psychological care, psychiatry is often not
around to help manage them.

Yet there is an ongoing need for psychiatry to address problems
such as unexplained seizures or tremors, pain that persists despite
a lack of any objective disease, the assessment of patients
refusing life-saving treatments, and the many other problems that
can have less obvious presentations, such as the long-term effects
of abuse presenting with urological symptoms. All of the hospital
specialities end up interacting with a good liaison psychiatry
service, if it is available.

But even if psychological support is available, the problems do
not end there.

For illnesses like heart disease, psychological support (for
example, to improve stress management and help address mood and
anxiety-related exacerbations of symptoms) is generally
accepted^[9], because the bona fides
of the diagnosis are not brought into question.

Yet for illnesses like Victoria’s, where the physical basis of
the diagnosis remains unclear or unknown, experience tells us that
a psychological approach implies for many patients that the illness
is not being taken seriously. If there is no demonstrable physical
cause, then any non-medical treatment is seen as suspect,
dismissive of the physical, and an implied trivialising of
suffering. Western medicine has become trapped in a simplistic and
one-dimensional view of illness.

The consequences of this current medical approach are
unsustainable – and the statistics speak for themselves. Consider
this: one large 1989
study^[10] in the US showed that
doctors found an underlying physical cause in just 16% of cases of
common symptoms, such as fatigue, dizziness, chest pain, back pain
or insomnia. This is a jaw-dropping figure, almost hard to fathom,
although typical of a number^[11] of studies^[12] over the 30 years since
that have produced similar results in diverse settings.

In one study^[13] in London, no medical
explanation accounted for 66% of patient encounters in a
gynaecology clinic. In the
Netherlands^[14], just under half of all
hospital medical encounters had a definite medical diagnosis to
account for the patients’ symptoms. For a large number of symptoms
that people see their doctor for, “no medical cause” is one of the
most common, if not most common, finding for the patient’s
symptoms. This is true in both primary care as well as secondary
care at the hospital.

The costs of this to the NHS are eye-watering. It is estimated
by the King’s Fund that at least
£11bn^[15] each year is spent
on poor management of medically unexplained symptoms as well as the
consequences of untreated mental health conditions among those with
long-term health conditions.

Yet the money is far from the worst of it. It is the human costs
that are the real story. Added to the protracted ill health and
disability are unemployment, financial adversity, strain on
relationships and an overall reduction in quality of life.

Looking beyond

Psychiatry and psychology can make a meaningful difference to
patient outcomes, although they are rarely invited to do so, and
there is commonly little will or resource to fund such services in
any case.

This is now a real cause for concern around long Covid. We are
still finding our way towards explaining what exactly this illness
is. It appears to encompass a range of conditions. There are some
cases showing demonstrable pathology, with abnormal blood tests and
imaging, and many, like Victoria’s, which do not.

This may be because our understanding of how the body develops
and perceives symptoms has its limits. But the patient’s suffering
is very real, whether or not a physical cause can be shown.
Whatever the cause, we know that depression, anxiety, fatigue and
insomnia frequently accompany a chronic and often disabling
illness. We also know that there is often no association between
the severity of the original infection and the subsequent long-term
disability: people with initially mild infections can suffer
long-term effects.

Without addressing these issues, offering practical
rehabilitation and physiotherapy, and addressing the fear and
despair that patients experience when facing a poorly defined but
seemingly chronic health problem, we can make the patient’s
situation worse.

The starting point of any successful treatment has to be a
shared understanding of the nature of the problem. We need to have
an open conversation in society about the mind and body, health and
illness. We need to be realistic about our current understanding of
the body, celebrating the truly impressive treatments and
innovations that the past half a century of medicine has brought
us, and honest about the limitations.

For Victoria, the hardest part of her treatment was managing her
doubt and uncertainty about what was wrong with her. After months
of normal investigations and an increasing sense of feeling like
she was being told that she was “not really ill”, she needed some
validation of her illness – to know that doctors believed in it. It
says something about our current medical system that this needs to
be said at all. Of course she was ill, just probably not within the
narrow construct of illness that we currently employ.

It is possible that, one day, we will discover all of the
physiological processes that go wrong, and the huge number of
currently unexplained illnesses will have demonstrable
abnormalities to find and benefit from crisp, targeted physical
treatments. I hope so. It is a worthy – albeit, in my view,
unlikely – goal.

Yet this still disregards the psychological components that all
illnesses have. All illnesses have a perceptual and psychosocial
component, which is to say that our experience of symptoms can be
very subjective and influenced by a variety of non-medical factors.
It is well known that experience of pain^[16] is influenced by our
expectations, how serious we think the cause might be, our culture,
our mood, even the language we use to describe pain. By addressing
all these factors, psychological approaches can reduce and even
cure symptoms.

When assessing a patient with medically unexplained but
persistent physical symptoms, a psychiatrist needs to explore all
these other factors that could be important in ameliorating the
symptoms. This includes identifying any current mood disorders,
such as depression, as well as anxiety disorders, which may be
maintaining or exacerbating the problems. Focusing on the symptoms
is an understandable but unhelpful means of perpetuating problems.
This is often driven by fear of what the symptoms may represent, so
an understanding of the person’s views on the illness, how serious
they believe it is, whether they believe it to be controllable or
not. All these are all important to elicit and address.

Psychological approaches are not meant to replace medical care,
any more than they would replace insulin therapy in diabetes or
cardiac drugs for heart disease. But they can complement that care.
Their use is not meant to suggest the patient’s symptoms are not
real, nor imply they may not have a real, physical basis.

Yet this debate has been going on for so long that I am not sure
if medicine can rise to the challenge. The insatiable demand for
spending on health and the relatively low priority of psychiatry,
mean that outside of a few bigger centres, the kind of specialist,
integrated treatments needed are not commonly available.

With an estimated 2.3%^[17] of Covid patients
having symptoms beyond 12 weeks, how long can we keep mind and body
separate? We have had centuries of a mind-body split. Perhaps
helping to bridge this divide will be Covid’s next surprise.

* Names and patient details have been changed to protect
patients’ anonymity.

Alastair
Santhouse^[18], consultant
psychiatrist and honorary clinical senior lecturer in psychiatry,
King’s College
London^[19].

This article is republished from The Conversation^[20] under a Creative
Commons licence. Read the original
article^[21].