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Patients battle for justice

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This article originally appeared on the OUPblog. Reprinted with permission.
 
By Leonard Jason
 
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 personnel.
 
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 six 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 deliberations.

About the author: 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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2 thoughts on “Patients battle for justice”

  1. 5341 says:

    Dr. Jason has identified so well the problems ME-CFS afflicted individuals have had to endure for decades..Lives torn apart and dismantled by a devastating disease that the scientific and medical fields have ignored depreciated and even denigrated causing the suffreers so much added pain, shame and deadening frustration in their quest for acceptance understanding and knowledgeable medical help.
    I am 75 years old, a psychologist, former nationally ranked senior tennis player. Approximately 7 years ago I began to experience unusually strong feelings of fatigue and some lightheadedness. Well, there followed about 30 to 40 doctors, innumerable procedures , many diagnosies and two major surgeries. One a heart valve replacement because my symptoms were diagnosed as heart failure at the University of Chicago. ME or CFS was never mentioned in the differentiation mix. Not an easy surgery and recovery for nothing. It just weakened me further. My second surgery was an emergency to save my life. Cardiology at Rush was administrating an esophageogram to get a close look at my foramin hole in my heart, determined to be the cause of my symptoms. What I believe was an unsupervised Fellow was administering the procedure. Ignoring my admonisments of level 10 pain the Fellow continued to try to snake the instrument down my esophagus. The upshot was that he had missed the esophagus opening and was tearing through the wall of my esophagus causing leakage and massive sepses. After 5 hours in late night emergency neck surgery my life was saved. Six weeks on a feeding tube and repair of a damaged vocal cord and vocal rehab. I had begun to heal. Months later when the foramin hole was successfully closed I found out that the small hole in my heart had nothing to do with my CFS. In fact my primary complaint of disabling fatigue had worsened.
    Over the years there have been innumerable less dramatic visits to every variety of healers trying, hoping to restore or at least get

    appropriate treatment without success. All this waste of efforts, so many detours, so much added suffering and pain for nothing, not even an appropriate diagnosis to consider before going in with the knife. I had to do the research, diagnose my own condition and educate the doctors. They had little or no knowledge of ME-CFS. A lot of patient harm can come from a culture of medical ignorance.
    We do need a great deal more research with a differentialy defined population, a great deal more medical education and a profound caring and respect for individuals inflicted with this devastating disease.

    Marv Cohen
    Oak Park, Il

  2. 5341 says:

    Dr. Jason has identified so well the problems ME-CFS afflicted individuals have had to endure for decades. Lives are torn apart and dismantled by a devastating disease that the scientific and medical fields have ignored, depreciated and even denigrated, causing the sufferers so much added pain, shame and deadening frustration in their quest for acceptance, understanding and knowledgeable medical help.
    I am 75 years old, a psychologist, former nationally ranked senior tennis player. Approximately 7 years ago I began to experience unusually strong feelings of fatigue and some lightheadedness. Well, there followed about 30 to 40 doctors, innumerable procedures , many diagnosies and two major surgeries, one a heart valve replacement because my symptoms were diagnosed as heart failure at the University of Chicago. ME or CFS was never mentioned in the differentiation mix. Not an easy surgery and recovery, which was all for nothing. It just weakened me further. My second surgery was an emergency to save my life. Cardiology at Rush was administering an esophageogram to get a close look at a foramen hole in my heart, determined to be the cause of my symptoms. A person who I believe was an unsupervised Fellow administered the procedure. Ignoring my admonishments of level 10 pain the Fellow continued to try to snake the instrument down my esophagus. The upshot was that he had missed the esophagus opening and was tearing through the wall of my esophagus causing leakage and massive sepsis.. After 5 hours in late night emergency neck surgery my life was saved. After six weeks on a feeding tube and repair of a damaged vocal cord and vocal rehab, I had begun to heal. Months later when the foramen hole was successfully closed I found out that the small hole in my heart had nothing to do with my CFS. In fact my primary complaint of disabling fatigue had worsened.
    Over the years there have been innumerable and less dramatic visits to every variety of healers hoping to restore or at least get appropriate treatment, without success. All this waste of efforts, so many detours, so much added suffering and pain for nothing, not even an appropriate diagnosis to consider before going in with the knife. I had to do the research, diagnose my own condition and educate the doctors. They had little or no knowledge of ME-CFS. A lot of patient harm can come from a culture of medical ignorance.
    We do need a great deal more research with a differentially defined population, a great deal more medical education and a profound caring and respect for individuals inflicted with this devastating disease.

    Marv Cohen
    Oak Park, Il

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