Tuesday, February 17, 2015

How disease names can stigmatize


How disease names can stigmatize

By Leonard A. Jason
February 16th 2015

On 10 February 2015, the long awaited report from the Institute of
Medicine (IOM) was released regarding a new name — Systemic Exertion
Intolerance Disease — and case definition for chronic fatigue syndrome
(CFS). Because I was quoted regarding this report in a New York Times
article, in part due to having worked on these issues for many years,
hundreds of patients contacted me over the next few days.

The reaction from patients was mixed at best, and some of the critical
comments include:

- "This new name is an abomination!"
- "Absolutely outrageous and intolerable!"
- "I find it highly offensive and misleading."
- "It is pathetic, degrading and demeaning."
- "It is the equivalent of calling Parkinson's Disease: Systemic
Shaking Intolerance Disease."
- "(It) is a clear invitation to the prejudiced and ignorant to
assume 'wimps' and 'lazy bums.'"
- "The word 'exertion,' to most people, means something substantial,
like lifting something very heavy or running a marathon – not
something trivial, like lifting a fork to your mouth or making your
way across the hall to the bathroom. Since avoiding substantial
exertion is not very difficult, the likelihood that people who are not
already knowledgeable will underestimate the challenges of having this
disease based on this name seems to me extremely high."

Several individuals were even more critical in their reactions —
suggesting that the Institute of Medicine-initiated name change effort
represented another imperialistic US adventure, which began in 1988
when the Centers for Disease Control changed the illness name from
myalgic encephalomyelitis (ME) to chronic fatigue syndrome. Patients
and advocacy groups from around the world perceived this latest effort
to rename their illness as alienating, expansionistic, and exploitive.
The IOM alleged that the term ME is not medically accurate, but the
names of many other diseases have not required scientific accuracy
(e.g., malaria means bad air). Regardless of how one feels about the
term ME, many patients firmly support it. Our 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
In response to a past blog post that I wrote on the name
change topic, Justin Reilly provided an insightful historical comment:
for 25 years patients have experienced "malfeasance and nonfeasance"
(also well described in Hillary Johnson's Osler's Web). This is key to
understanding the patients' outrage and anger to the IOM.

So how could this have happened? The Institute of Medicine is one of
our nation's most prestigious organizations, and the IOM panel members
included some of the premier researchers and clinicians in the myalgic
encephalomyelitis and chronic fatigue syndrome arenas, many of whom
are my friends and colleagues. Their review of the literature was
overall comprehensive; their conclusions were well justified regarding
the seriousness of the illness, identification of fundamental
symptoms, and recommendations for the need for more funding. But these
important contributions might be tarnished by patient reactions to the
name change.
The IOM solicited opinions from many patients as well as
scientists, and I was invited to address the IOM in the spring
regarding case definition issues. However, their process in making
critical decisions was secretive, and whereas for most IOM initiatives
this is understandable in order to be fair and unbiased in
deliberations, in this area — due to patients being historically
excluded and disempowered — there was a need for a more transparent,
interactive, and open process.

So what might be done at this time? Support structural capacities to
accomplish transformative change. Set up participatory mechanisms for
ongoing data collection and interactive feedback, ones that are vetted
by broad-based gatekeepers representing scientists, patients, and
government groups. Either the Chronic Fatigue Syndrome Advisory
Committee (that makes recommendations to the Secretary of US
Department of Health and Human Services) or the International
Association of ME/CFS (the scientific organization) may appoint a name
change working group with international membership to engage in a
process of polling patients and scientists, sharing the names and
results with large constituencies, and getting buy in — with a process
that is collaborative, open, interactive, and inclusive. Different
names might very well apply to different groups of patients, and there
is empirical evidence for this type of differentiation. Key
gatekeepers including the patients, scientists, clinicians, and
government officials could work collaboratively and in a transparent
way to build a consensus for change, and most critically, so that all
parties are involved in the decision-making process.

Leonard A. Jason is a professor of clinical and community psychology
at DePaul University, director of the Center for Community Research,
and the author of Principles of Social Change.

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