MEA Summary Review: Differentiating Medical Uncertainty | 21 October 2019


Charlotte Stephens, Research Correspondent, ME Association.

Last week, an interesting review was published by Prof. Robert Bransfield and Dr. Kenneth Friedman from the Department of Psychiatry, Rutgers-Robert Wood Johnson Medical School, New Jersey, USA.

Differentiating Psychosomatic, Somatopsychic, Multisystem Illnesses and Medical Uncertainty

The review examined the various diagnostic definitions used to describe ‘medically unexplained illnesses’ and this included discussion about ME/CFS.

It highlighted how various factors, including group research findings being applied to individual patients, limited knowledge of doctors, restricted time to assess patients, economic pressures from healthcare systems and outdated guidelines, lead to misdiagnosis and delayed or inappropriate treatment and support for patients.

The review covered the broad range of labels that are all too often used to misdiagnose conditions that lack physical or laboratory ‘evidence’ of physical illness, essentially deeming them as ‘all in the head’. Unfortunately, ME/CFS can often be one of these conditions.

The authors expressed how “outdated and/or inaccurate terms” – such as ‘conversion disorder’ or ‘functional disorder’ – can be over-diagnosed by the medical profession.

They then went on to stress the importance of personalised medicine i.e. treating the patient as an individual, rather than trying to fit them into a specific box. They also referred to the PACE Trial as an example of a single study that led to harmful guidelines (see below).

In this website summary, we cover some of the key points from the review, highlighting significant extracts.

Definitions that were used
 
Psychosomatic – The effect of the mind on the body- physical illness that is caused or exacerbated by mental or emotional stress.
 
Somatopsychic – The effects of the body on the mind- mental disorders or psychological symptoms that are caused or exacerbated by physical illness.
 
Multisystem illness – Conditions that impact the entire body and cause symptoms in multiple systems, such as the nervous system, the immune system, the endocrine system, etc. In these conditions, there are both somatic (body/physical) and psychiatric (mind/mental) symptoms.
 
Medical Uncertainty – An inability to provide an accurate explanation of the patient’s health problem.

Medical Abandonment i.e. ‘It’s all in your head’

The review starts with a discussion of complex illnesses and how they can be wrongly handled, diagnosed and treated, leaving patients feeling lost and abandoned by the healthcare system.

What’s worse, the physician’s attitudes towards these patients can become unhelpful, “When dealing with these challenging cases, some physicians view these patients as being difficult, frustrating, and demanding.”

“Difficult-to-diagnose cases are often viewed as invisible illnesses, since there may be no outward appearance of illness by a superficial examination. Many people suffering from these chronic, invisible illnesses such as myalgic encephalomyelitis/chronic fatigue syndrome, fibromyalgia, Lyme disease, and postural orthostatic tachycardia syndrome (POTS) are frequently misdiagnosed.”

“They are tired of being unheard and told symptoms are imaginary, self-inflicted, and psychosomatic. As a result of this, they often describe feelings of abandonment from physicians and the healthcare system, which results in increased risks of suicidal ideation, suicide attempts, and suicide compared with the general population.”

“Illnesses such as chronic fatigue syndrome and fibromyalgia are ‘contested’ illnesses. They are considered psychosomatic and not ‘real’ illnesses. They are given labels such as ‘hysteria’, ‘hypochondriacal’, or ‘all in their head’” 

 “There is no evidence that fatigue associated with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), Lyme disease, or other chronic multi-system illnesses is psychogenic. In contrast, fatigue can cause mental distress.”

“Historically, there has been a bias in which poorly understood illnesses are often considered to have a psychiatric origin until the pathophysiology is better understood and explained on some other basis.”

The authors argue that a psychiatric diagnosis cannot be given solely based upon the absence of physical, laboratory, or pathological findings and that many ‘all in your head’ conditions may be related to the microbiome and the immune system.

Outdated Terms

Prof. Bransfield and Dr. Friedman outline and discuss the definitions of a range of diagnostic terms used for patient presentations where there is a lack of clinical or laboratory abnormalities.

These include: Mental health, Mental Illness, Mental Disorder, Psychosomatic Disorders, Somatopsychic Disorder, Multisystem Disorders, Medical Uncertainty, Somatic symptom disorders Somatoform disorders, Medically unexplained symptoms, Functional neurological symptom disorder, Illness anxiety disorder, Functional disorders, Psychogenic disorders, Compensation neurosis, Psychogenic seizures, Psychogenic pain, Delusional Parasitosis, Bodily distress disorder.

They go on to comment, “A review of the definitions raises some significant issues that need further discussion.” and that these labels, “have the potential to be misused and abused.”

They highlight that a flaw in some of these definitions is that guidelines for diagnosis include the patient having ‘excessive concern’ over their symptoms, even after being reassured by the physician that there is nothing ‘physically wrong’ with them (according to limited assessments). This is a problem with how one defines excessive concern. They argue:

“If a previously healthy and active person acquires a debilitating, multisystem condition, with multiple complaints including paralyzing fatigue and pain that adversely impact multiple areas of functioning, and the evaluating physician has an inadequate knowledge of the illness, takes an inadequate history, performs an inadequate exam, and does not understand the seriousness of symptoms, or fails to use adequate clinical judgment, how can the patient’s response to the physician’s ‘reassurance’ be considered excessive?”

Harmful Guidelines

The review discusses how guidelines used by physicians can sometimes be misleading and even harmful.

These guidelines are often created as a result of single studies on a group of patients and then applied to a whole population of people. The authors used the PACE trial in ME/CFS as a case study to demonstrate this.

“A lack of understanding of myalgic encephalomyelitis/chronic fatigue syndrome both prior to and after the Institute of Medicine Report on this disorder has contributed to many patients feeling maligned, blamed, untreated, and undertreated.”

“Treatment recommendations based upon a graded activity and a cognitive behavioral therapy (PACE) trial were previously adopted by many healthcare organizations…The inaccurate treatment recommendations based upon the PACE trial recommended patients should ignore symptoms.”

“Many patients failed to respond to this treatment, and the research supporting the concept that exercise can treat chronic fatigue syndrome was subsequently rejected by Cochrane stating that the work does not meet the organization’s “quality standards.””

Sir William Osler (quotations used in the review)

“There is no more difficult art to acquire than the art of observation.”

“If you listen long enough, the patient will give you the diagnosis.”

“Medicine is learned by the bedside and not in the classroom. Let not your conceptions of disease come from the words heard in the lecture room or read from the book. See and then reason and compare and
control. But see first.”

“To study the phenomena of disease without books is to sail an uncharted sea, while to study books without patients is not to go to sea at all.”

“The greater the ignorance, the greater the dogmatism.”

Personalised/ Individualised Care

The review goes on to highlight the importance of personalised medicine, looking at the patient as an individual, rather than trying to fit them into a diagnostic ‘box’ defined by a checklist.

“Patients with unique presentations are being compromised by an emphasis upon population-based standards of care rather than their individual patient needs and experiences.”

“It is far better for physicians to rely less upon clinical guidelines based upon group statistics for managing single diseases and instead rely more on their own clinical judgment to create treatment plans that are tailored to meet the needs of individual patients.”

“The Great Britain National Health Service views itself as having a strong scientific tradition of evidence-based decisions about care… A forward-looking National Health Service would recognize that patient experience evidence should be respected, cherished, and used on an equal footing with medical evidence. It is time for the double standard to end.”

Conclusions

Instead of labelling conditions that are not yet fully understood by the scientific or medical community as being made up and in the patient’s head, such conditions need to be questioned and explored to enable better understanding. When it comes to ‘bodily distress syndrome’, the authors joke “a more valid term might be ‘diagnostic distress syndrome’.”

“Historically, there has been a tendency to label physical symptoms that could not be explained as being of a psychiatric origin. As a result, many patients with complex, confusing symptoms and poorly understood diseases who receive an inadequate assessment for their condition are often referred to psychiatrists until the time when the disease is better understood and defined.”

“As more sophisticated technologies emerge to visualize the brain, to demonstrate brain pathophysiology, and to quantitate mental functioning, and the causes of mental illness become better understood, the validity of many of the previously used phrases that were based upon the absence of physical findings, such as psychogenic and functional disorders, are becoming less valid.”

“When using diagnostic testing, absence of proof is never proof of absence. Everything is caused by something. Nothing is caused by nothing. When clinical findings are puzzling, the ethical approach is to continue attempting to explain the symptom, search for its cause, and admit that we do not have the required knowledge to provide a cure or even complete symptom relief.”

Prof. Bransfield and Dr. Friedman concluded:

“Better education concerning the interface between medicine and psychiatry and the associated diagnostic nomenclature as well as utilizing clinical judgment and thorough assessment, exercising humility, and maintaining our roots in traditional medicine will help to improve diagnostic accuracy and patient trust.”

The ME Association

Real People. Real Disease. Real M.E.

We are a national charity working hard to make the UK a better place for people whose lives have been devastated by an often-misunderstood neurological disease.

If you would like to support our efforts and help ensure we can inform, support, advocate and invest in biomedical research, then please donate today.

Just click the image opposite and visit our JustGiving page for one-off donations, to establish a regular payment or to create your own fundraising event.

Or why not join the ME Association as a member and be part of our growing community? For a monthly (or annual) subscription you will also receive our exclusive ME Essential magazine.


ME Association Registered Charity Number 801279