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Scientific progress stumbles without a case definition

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Click here to read this article on the Oxford University Press Blog

“Current estimates from the Centers for Disease Control and Prevention (CDC) of the number of people in the United States with chronic fatigue syndrome (CFS) increased from about 20,000 to as many as four million within a ten-year period. If this were true, we would be amidst an epidemic of unprecedented proportions. I believe that these increases in prevalence rates can be explained by unreliable case definitions. For example, in 1994, the CDC’s case definition did not require patients to have core symptoms of the CFS. Making matters worse, in 2005, in an effort to operationalize their inadequate case definition, the CDC broadened the case definition so that ten times as many patients would be identified. Even though these estimates were challenged as bringing into the CFS case definition many who did not have this illness such as Major Depressive Disorder, as late as 2016, the CDC re-affirmed the merit in this broader case definition.

Another misguided effort occurred in 2015, when the Institute of Medicine (IOM) developed a revised clinical case definition that at least did specify core symptoms, but unfortunately also eliminated almost all exclusionary conditions, so those who had had previously been diagnosed with other illnesses such as Melancholic Depressive Disorders, could now be classified as meeting the new IOM criteria. This case definition has the unfortunate consequence of again broadening the types of patients that will now be identified, thus their effort also will inappropriately select many patients with other diseases as meeting the new IOM criteria. Making matters even worse, the clinical case definition was not designed to be used for research purposes, but it is clearly being used in this way, and one group of researchers has already inaccurately reported that the new clinical case definition is as effective at selecting patients as research case definitions.

This comedy of errors becomes even more tragic with the recent development of a new pediatric case definition. As with past efforts, data were not collected to field test this new set of criteria. Even worse, medical personnel are asked to make decisions regarding symptoms without being providing any validated questionnaires, and this has the effect of introducing unacceptable levels of diagnostic unreliability. Scoring rules are so poorly developed that guidelines indicate that a child needs to have most symptoms at a moderate or severe level, but in reality, according to the flawed scoring rules of this case definition, youth can be classified as having the illness even if they report all symptoms as mild. These criteria further suggest that “personality disorders” should be assessed in children, as these disorders are listed as psychiatric exclusionary conditions; however, personality disorders cannot be diagnosed (or reliably assessed) prior to the age of 18, as personality characteristics are not fully developed until adulthood. Finally, these authors also require the youth to have at least six months of illness duration, whereas the Canadian criteria and others suggest that children with three months duration can be diagnosed with the illness. Other significant limitation of this primer have been mentioned by others. In summary, these authors failed to incorporate standard psychometric procedures that include first specifying symptoms and logical scoring rules, developing consistent ways to reliably assess these symptoms, and then collecting data to ensure that the proposed criteria are reliable and valid.

When a field of inquiry is either unable or unwilling to develop a valid case definition, as has occurred with CFS, the repercussions are catastrophic for the research and patient community. In a sense like a house of cards, if the bottom level is not established with a sturdy foundation, all upper levels of cards are vulnerable to collapse. Science is based on having sound case definitions that allow investigators to determine who has and does not have an illness. Having porous and invalid case definitions, whether clinical or research, affects not only prevalence estimates of CFS, but also has dire consequences for treatment approaches, as when individuals who have solely affective disorders are misclassified as having CFS, and when they improve from psychological interventions, it is easy to erroneously conclude that CFS is a psychiatric illness, which further stigmatizes patients.”

Featured image credit: Guy by marusya21111999. CC0 public domain via Pixabay.

Documentary about ME in Children

View the 1 hour film for free using the Promo code: VOICES

Science to Patients with ME

Eight broadcasts featuring Leonard A. Jason from the Science to Patients Netherlands Program

 

Youth Access to Tobacco

Walter Jacobson’s TV broadcast of how easy it is for youth to purchase tobacco. It was DePaul’s first effort on youth access to tobacco.

Affordable solutions to a health problem

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Click here to see Leonard Jason’s Oxford University Press Blog titled: Comprehensive affordable solutions to a major health problem. The first paragraph of the blog is below:

Alcohol and drug abuse costs Americans approximately $428 billion annually. Despite this enormous cost—which, we must remember, is just the economic face of a community, family, and individually life-shattering problem—the vast majority of those with an alcohol or substance use problem do not receive treatment, and even fewer are likely to achieve long-term sobriety. In short, the existing system is characterized by inadequate access, high recidivism, and recurring treatment—at best, an ineffective and expensive revolving door. It has become increasingly clear that detoxification and treatment programs are insufficient to ensure abstinence from drugs and alcohol; for most people with substance use disorders, continued longer-term support following treatment is necessary.

S.O.S. for At-Risk Teens

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Click here to check out our feature by DePaul

LaVome Robinson is proving the adage “an ounce of prevention is worth a pound of cure” in her work with African-American adolescents in Chicago.

Backed by a  five-year grant of nearly $3 million from the National Institutes of Health, the professor of psychology is making a difference in the lives of at-risk teens through an intervention program—Success over Stress (S.O.S.)—which gives them skills in reducing stress, anxiety and aggression. S.O.S. includes 15 weekly group sessions during which the students learn to identify stress, understand its symptoms and causes, and manage it with a range of strategies.

“We give them strategies they can put in action—problem-solving strategies, relaxation strategies, thought-stopping strategies, and alternative-thinking strategies—so they can gain some control,” says Robinson.  “By the end of the sessions, the teens can monitor their stress levels day-to-day, put a strategy in place when they need to, and generally maintain their equilibrium.”

Robinson and her research partner, Leonard Jason, designed S.O.S. to work for these kids, in this place, at this time. “The life of an African-American child in Chicago is radically different from the life of a white child in Chicago and even of an African-American child in other cities” says Robinson. “Yes, like other kids they worry about their grades or about their social lives, but the biggest thing they worry about is their safety in the midst of potentially explosive situations. Generic stress reduction programs just won’t help.  So, we made sure that everything in the S.O.S. program—the identified sources of stress, the examples and case studies, the language used by the group facilitators—is relevant to these specific teens.”

Patients battle for justice blog

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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.

Click here to read more on Leonard Jason’s blog for Oxford University Press.