Saturday, April 30, 2016

Patients battle for justice

Patients battle for justice

By Leonard A. Jason
September 28th 2015

Is it possible that a disease as impairing as Type II diabetes mellitus, congestive heart failure, Multiple Sclerosis, and end-stage renal disease could be repeatedly belittled and delegitimized by scientists and health care professionals? Tragically, this is the case for a devastating illness affecting over one million Americans, and these patients have been deprived of their basic rights to respect, appropriate diagnosis, and humane treatment.

In the beginning, patients with this illness had a credible name,
Myalgic Encephalomyelitis (ME), and diagnostic criteria that had been
developed by the distinguished British physician, Dr. Melvin Ramsay.
Yet, in 1988, the Centers for Disease Control (CDC) renamed this
illness chronic fatigue syndrome (CFS). Patients were unanimous in
their disdain for this trivializing term, but they were no match for
the supreme power and authority of the CDC. The new name placed
patients around the world in a compromised position, as they were now
forced to use a degrading and stigmatizing term in explaining their
illness to family members, friends, work associates and medical

Patients were next characterized as having a relatively rare "Yuppie
Flu" disease, and flawed epidemiology was responsible for these
inaccurate and biased characterizations. If this were not enough, the
CDC in 1994 developed a case definition that did not require the
cardinal symptoms of this illness (such as post-exertional malaise and
neurocognitive impairments). When this porous case definition was used
to select patients, the resultant heterogeneity increased the risk of
failing to consistently identify biomarkers, which contributed once
again to dismissing those affected as having a psychiatric illness.
Misguided psychiatrists then developed treatment approaches focusing
on increasing exercise, even though the patients' chief complaints
were muscle weakness and exercise induced fatigue.

Rarely in the annals of recorded medicine has there been such a David
and Goliath-like battle, with impaired and sick patients trying to
defeat an entrenched medical and scientific establishment. Their story
of resistance is not one of an epic skirmish, but rather a veritable
war with health care professionals and scientists that has endured for
decades, as has been so well documented by Hillary Johnson.

This past year, in an effort to rectify these tragic abuses, the
Institute of Medicine (IOM) released a report that not only clearly
emphasized the debilitating nature of this illness, but also
strikingly rejected the stigmatizing name CFS and the defective case
definition. Unfortunately, particularly in light of decades of past
disastrous scientific blunders, the IOM once again imposed an
inappropriate name (i.e., Systemic Exertion Intolerance Disease) on
the patient community, but patients valiantly challenged this
recommendation by collecting data that exposed the spuriousness of
this foolish name change effort.  Even a federal panel called the
Chronic Fatigue Syndrome Advisory Committee at its recent meeting in
August has rejected this new name.

The IOM also released a new case definition to replace CFS, and our
published work now suggests that these new criteria would almost
triple the prior CFS prevalence rate, and this is in part due to the
inclusion of individuals who formerly had been excluded. Unwittingly,
this inadvertent action accomplished much of what Bill Reeves and the
CDC had attempted to do a decade ago when they proposed an ill-fated
expansion of the case definition.

Is there any way to salvage the damage inflicted on the larger patient
community by well-intentioned scientists from the IOM?  Perhaps we
might consider re-activating the brilliant scholarship of Dr. Melvin
Ramsay and the term Myalgic Encephalomyelitis, which would identify a
smaller more homogenous group of patients as having ME. In contrast,
those meeting the broader IOM criteria, which we might call
Neuroendocrine Dysfunction Syndrome (which had been recommended by the
patient inspired Name Change workgroup over a decade ago) could
replace CFS and this category would represent a larger group captured
by the key IOM symptoms. Those that do not meet the ME criteria or the
broader IOM criteria could be classified as having chronic fatigue,
which is the most general category, and represents those with 6 or
more months of fatigue. Such a tripartite classification system would
eliminate the detested term CFS, validate the original respected name
ME, differentiate ME from the IOM criteria, and provide a new
nonstigmatizing term for those not meeting the more restrictive ME
criteria. In addition, the broader IOM criteria could be used for
clinical purposes, whereas the more restrictive ME criteria could be
used for research purposes. Some scientists might prefer to consider
this tripartite grouping a matter of severity rather than categorical
differences, but all agree that differentiations of this type occur
with many diseases, and such a classification system has the potential
to clarify discrepant findings from epidemiologic, etiologic, and
treatment studies.

Ultimately, whatever decisions are made on the names and criteria, the
vetting process needs to be open, inclusive and transparent, with
patients playing a prominent, decisive, and leadership role in these

Image credit: Photo by Dr.Farouk, CC BY 2.0 via Flickr

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 and co-editor of the
soon to be published Handbook of Methodological Approaches to
Community-Based Research: Qualitative, Quantitative, and Mixed
Methods. Read his previous blog posts on the OUPblog.


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