How important is the name of a disease? Do names influence treatment?

There are a number of factors that can alter the manner in which a disease and its patients are treated. The opinions of patients, clinicians and policymakers can all have an impact, but to what extent are these affected by the name of a disease?

Can a name affect the kind of treatment that patients can expect to receive?

In Shakespeare's Romeo and Juliet, it is claimed "that which we call a rose by any other name would smell as sweet." 

But would someone's reaction to a rose be different if, for example, they were instead named "stink blossoms," as suggested by Bart Simpson in an episode of The Simpsons?

This might be a slightly silly and trivial example, but it serves to make a point. 

The way in which objects and people are perceived can be altered purely on account of their name.

If offered a choice of two hospitals to visit without seeing any credentials, I would certainly be more inclined to visit the "Good Heart Clinic" over "Dr. Giggles' Bouncy Fun Hospital." But outside of extreme hypothetical decisions such as this, what extent does this form of bias exist within medicine?

Some diseases have got reputations so fearsome that clinicians avoid speaking their names. A recent report from the Alzheimer's Association found that many health care providers decided against disclosing a diagnosis of Alzheimer's disease due to the fear of causing a patient or their caregivers distress.

Last month, the Institute of Medicine (IOM) convened a committee of health experts that proposed new diagnostic criteria and a new name for chronic fatigue syndrome. The changes were recommended to more accurately reflect the main characteristics of the condition and improve levels of treatment.

In this Spotlight article, we take a look at these recommendations and examine the reactions they have received from patients and clinicians alike. We will also examine a number of other examples of medical name changes from around the world in order to assess just what is in a name.

Introducing 'systemic exertion intolerance disease'

The IOM-convened committee suggested that previous names myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS) may have contributed to misconceptions about the illness.

Encephalomyelitis refers to brain inflammation, and there is a lack of evidence to suggest that the illness causes this to occur in patients. Myalgia - muscle pain - is also not considered to be a core symptom of the disease. Similarly, previous research has suggested that the name "chronic fatigue syndrome" could lead to the disease being trivialized.

Due to the stigma in the name 'chronic fatigue' just about everyone wrote off my newly discovered syndrome, causing a major loss in friendships, relationships, jobs, etc.

The IOM committee recommended that a new, more representative name be adopted - systemic exertion intolerance disease (SEID):

"This name captures a central characteristic of the disease: the fact that exertion of any sort - physical, cognitive or emotional - can adversely affect patients in many organ systems and in many aspects of their lives. The committee believes systemic exertion intolerance disease appropriately captures the complexity and severity of the illness."

This announcement was a positive one. Calling it a disease instead of a syndrome and getting national attention vindicates my years of failed explanations attempts.

The recommendation was still made only recently, and so it is likely that its impact will not be measurable for a considerable amount of time. 

How might this recommendation and potential widespread adoption of the new name affect treatment of the disease? The answer to this question could be found in a previous instance of renaming that occurred in Japan in 2002.

The problem with 'mind-split-disease'

Schizophrenia is a chronic mental disorder that can be severely disabling to those who develop it. It is characterized by a range of deficits in emotional responsiveness, perceptions and thought processes.

The belief that all people with schizophrenia have split personalities is just one common misconception about the disorder.

Recently, there was a large amount of public misunderstanding around the disease, with many people mistakenly believing that schizophrenia means having a split personality or a violent temperament.

A report conducted in 1999 even reported that 61% of Americans believed people with schizophrenia were likely to be violent toward other people.

These misperceptions may have been caused by a combination of media portrayals of the disease and the name itself. 

The word comes from the Greek words skhizein meaning "to split" and phren meaning "mind." While this term was originally intended to suggest a fragmented way of thinking, it lends itself readily to the idea of split or multiple personalities.

In Japan, schizophrenia used to be referred to as Seishin Bunretsu Byo, translating as "mind-split-disease." 

In a paper published in World Psychiatry,researchers describe how many psychiatrists were reticent to inform patients of a schizophrenia diagnosis because of the negative consequences such a diagnosis could confer.

The old term identified the patient as a person with a disorganized personality even after recovery or full remission. That is, once the diagnosis of 'Seishin Bunretsu Byo' was made, the patient was usually regarded as an essentially ill person throughout his or her life.

A new term Togo Shitcho Sho, translating as "integration disorder" was introduced by the Japanese Society of Psychiatry and Neurology in 2002, following a request from a patients' families group.

The new term for schizophrenia ("Togo Shitcho Sho") refers to the vulnerability-stress model, and implies that the disorder may be treated and that recovery is possible if a combination of advanced pharmacotherapy with appropriate psychosocial intervention is used.

Seven months after the renaming, a survey found that the new term had replaced the old in around 78% of cases. The percentage of cases in which patients were fully informed of their diagnosis rose from 36.7% to 69.7% over the course of 3 years.

A survey of the Miyagi College of Psychiatrists also reported that 82% of respondents found the new name better for obtaining patient consent, improving treatment compliance, reducing stigma and achieving social integration for patients.

Negative reactions to the proposed renaming of ME/CFS

These outcomes suggest that the renaming of schizophrenia in Japan has been a success, and it is perhaps not surprising that there have been calls to rename the disease elsewhere.

In Korea, for example, a new term has also been coined to replace "mind-splitting disease" with "attunement disorder." "This term literally refers to tuning a string instrument, and metaphorically it describes schizophrenia as a disorder caused by mistuning of the brain's neural network," explain the authors of a study published in the Asian Journal of Psychiatry.

Not everyone is supportive of change, however. Concerning schizophrenia, authors argue in an article published in The BMJ that renaming schizophrenia would not have the desired effect:

"Unfortunately, changing the name of the condition (or even abolishing the concept) will not affect the root cause of the stigma - the public's ignorance and fear of people with mental illness. Renaming may even have the unintended effect that the person, rather than the illness, is blamed for the symptoms."

The proposed renaming of ME/CFS to SEID has also provoked some negative responses from clinicians and the general public alike.

A research group has found that a more medically-sounding term like ME is more likely to influence medical interns to attribute a physiological cause to the illness. And while the term ME is deemed to be medically inaccurate, he argues that many other diseases that are accepted have inaccurate names. Malaria, for example, means "bad air."

In fact, this recommendation was made without proper consultation with the public, the committee making critical decisions in a secretive process. While this approach may be necessary for some IOM initiatives, "in this area - due to patients being historically excluded and disempowered - there was a need for a more transparent, interactive and open process."

A more inclusive approach to instigating a name change was demonstrated by the Association of Early Pregnancy Units (AEPU) and the Miscarriage Association in the UK. The publication of a charter for miscarriage care by the online organization Mumsnet suggested there was a need for more sensitive terminology in British health care.

In particular, the commonly used term evacuation of retained products of conception was found to be both upsetting and confusing by women and their partners. A research team conducted several online surveys targeting both health professionals and patients and found there was an overwhelming interest in changing this term.

The surveys found that the alternative term surgical management of miscarriage (SMM) was the most popular, and it has since been recommended by the AEPU and the Miscarriage Association that the term should be introduced as standard in the UK.

'I am excited for the awareness it has brought to the disease'

Although there has been negativity from some quarters to the recommended name change for ME/CFS, there have also been positive reactions. At the forefront of this positivity appears to be the implication that the proposed name change has now legitimized the disease.

Only time will whether the recommended new name for ME/CFS will lead to improved research and rates of diagnosis.

To some, the IOM report may not sound like a major feat, but to longtime supporters, sufferers, and researchers of CFS/SEID, the attention surrounding the report is exactly what they have been striving for. 

For the first time, CFS/SEID is relevant and it is getting national coverage.

The nonprofit organization is already feeling the impact of this raised awareness. 

Bent But Not Broken report an increase in their receipt of financial application submissions, patient testimonials and overall interest in the disease since the IOM's recommendation was made.

Regardless of your feelings about the name, try to look past just the title and look at the implications for research, funding, backing, social legitimacy, treatments and insurance coverage.

As a matter of fact, education, acceptance and clinical adoption of the disease within the medical community are major problems for the treatment of CFS/SEID that are yet to be addressed.

Once practitioners believe in the condition and the ranges of severity, then proper diagnosis can occur. Once that happens, I believe having a full range of treatment options available is the next step.

In the IOM report, the committee states that many people struggle with their symptoms for years before receiving a diagnosis. Bringing the disease back to the attention of health care providers could be a surefire way of improving this situation.

Despite the flaws in the recommended new name, it is clear that there are potential benefits to be had. While it can be difficult to accurately label conditions such as CFS/SEID and schizophrenia that can affect patients in a wide variety of different ways, it is important that people - both clinicians and patients alike - are aware of them.

The renaming of schizophrenia in Japan suggests that the naming of a disease can have a positive impact on how it is treated. 

Only time will tell what the impact of the IOM's recommendations for CFS/SEID will be, but there is hope that, despite some criticism, it could be a change that benefits between 836,000 and 2.5 million Americans estimated to have the disease.

References:

1.     Bent But Not Broken, I have a disease…I’m not crazy! It’s called SEID, CFS, accessed 25 March 2015.

2.     Bent But Not Broken news release, accessed 25 March 2015.

3.     IOM, Beyond myalgic encephalomyelitis/chronic fatigue syndrome: redefining an illness, accessed 25 March 2015.

4.     Johyeonbyung (attunement disorder): renaming mind splitting disorder as a way to reduce stigma of patients with schizophrenia in Korea, Jun Soo Kwon, et al., Asian J Psychiatr, published online 29 January 2014, abstract.

5.     Miscarriage Association, Time for a change, accessed 26 March 2015.

6.     National Institute of Mental Health, Schizophrenia, accessed 25 March 2015.

7.     Renaming schizophrenia, Jeffrey A. Lieberman and Michael B. First, BMJ, doi: 10.1136/bmj.39057.662373.80, published online 20 January 2007.

8.     Renaming schizophrenia: a Japanese perspective, Mitsumoto Sato, World Psychiatry, published online February 2006.

9.    Report: Mental health: a report of the Surgeon General, accessed 25 March 2015