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When sickness interrupts science

2018 (Jan. 10). Nature. Emily Sohn. When sickness interrupts science. How to balance a long-term illness and a research career.



Navigating a research career along with a chronic illness, say many researchers, requires zeroing in on what is most essential. Leonard Jason, a psychologist who was diagnosed in 1989 with myalgic encephalopathy/chronic fatigue syn­drome (ME/CFS), realized that he needed to be strategic about his work and careful not to over­tax himself. His approach has led to recognition, including awards for excellence in research and, at one point, a position on a US federal panel advising about research on ME/CFS. He recommends that scientists pursue the work that matters most to them. “The reality is that you can’t do it all,” says Jason, of DePaul University in Chicago, Illinois. “Prioritization is absolutely critical when one is in a dimin­ished state. If it’s trivial and you don’t care about it, let it go.”

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 Handbook of Methodological Approaches to Community-Based Research: Qualitative, Quantitative, and Mixed Methods.


A reboot for chronic fatigue syndrome research

2018 (Jan. 3). Nature. Amy Maxmen. A reboot for chronic fatigue syndrome research.

Research into this debilitating disease has a rocky past. Now scientists may finally be finding their footing.


In the 1990s, Leonard Jason, a psychology researcher at DePaul University in Chicago, Illinois, started questioning basic epidemio­logical information on ME/CFS. For one thing, the CDC described the syndrome as rare and predominantly affecting white women. But Jason reasoned that clinicians could be missing many cases. Those who were diagnosed were the ones most likely to return for a second, third or fourth medical opinion. And people who felt stigmatized, were confined to bed, were poor or had little social support might not go to such lengths to get a diagnosis.

So, Jason’s team called almost 30,000 random Chicago phone numbers to ask whether someone in the household had symptoms of the disorder. If they did, the team brought them into clinics for evaluation. As a result of the findings from this4 and other studies, the CDC removed the word ‘rare’ from its description of the syndrome. In 2015, a report5 from the US Institute of Medicine (IOM) estimated that 836,000 to 2.5 million Americans have the disorder. Another study6 estimated that more than 125,000 people in the United Kingdom are living with ME/CFS. And a report7 from Nigeria suggests that the prevalence of the disease might be even higher there, perhaps exacerbated by other infectious diseases and poor nutrition. But these tallies are fraught, owing to the different ways in which doctors diagnose the condition.

In many ways, people with ME/CFS remain invisible. Most have been dismissed by at least one physician. And society often ignores them, too. In the United States, financial pressures are common because health insur­ers might consider experimental treatments unnecessary, and employers might not feel that disability payments are justified. Even in countries where health care is a right, the situ­ation has been dire. Many patient advocates say that UK government agencies have essentially treated ME/CFS as if it were a strictly psychological condition, a conclusion that they argue was bolstered by the PACE trial’s findings that exercise and cognitive behavioural therapy relieve symptoms. The National Health Service (NHS) recommended these interventions, even after many patients complained that exercise dramatically worsens their condition.

Epidemiologists have suggested that the anguish of contending with the disorder and society’s general dismissal of it contribute to an up to sevenfold increase in the rate of suicide for people with ME/CFS.

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 Handbook of Methodological Approaches to Community-Based Research: Qualitative, Quantitative, and Mixed Methods.




Scientific progress stumbles without a valid case definition



“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.

Webinar on Mixed Methods


Leonard Jason presented a webinar for the Office of Disease Prevention NIH webinar on Mixed Methods in Disease Prevention & Health Promotion Research.

About the Webinar
Quantitative research methods have the most power to appeal to collaborators in funding and policy, while qualitative studies can enhance the validity or trustworthiness of inferences and assertions by providing mutual confirmation of findings. Mixing qualitative and quantitative research methods can provide deeper exploration of causal mechanisms, interpretation of variables, and contextual factors that may mediate or moderate the topic of study. Additionally, formative mixed methods can be instrumental in learning how to access and develop trusting relationships with different sectors of a community (Jason and Glenwick, 2012), and combining these methods can be most effective when undertaking community-based issues. In this webinar, participants will get an introduction to the different approaches used in conducting mixed-methods research, including the benefits and challenges.


qEEG with Patients with ME

This video discusses the qEEG research that the Zinn’s are conducting at our center.

The discussion is based on this article, and the abstract is below: Zinn, M.L., Zinn, M.A. & Jason, L.A. (2016). qEEG / LORETA in assessment of neurocognitive impairment in a patient with chronic fatigue syndrome: A case report. Clinical Research: Open Access. 2(1), 1-5. doi: doi.org/10.16966/2469-6714.110


Importance: Chronic Fatigue Syndrome (CFS) is a chronic disease resulting in considerable and widespread cognitive deficits. Accurate and accessible measurement of the extent and nature of these deficits can aid healthcare providers and researchers in the diagnosis of this condition, choosing interventions and tracking treatment effects. Here, we present a case of a middle-aged man diagnosed with CFS which began following a typical viral illness.

Observations: LORETA source density measures of surface EEG connectivity at baseline were performed on 3 minutes of eyes closed de-artifacted19-channel qEEG. The techniques used to analyze the data are described along with the hypothesized effects of the deregulation found in this data set. Nearly all (>90%) patients with CFS complain of cognitive deficits such as slow thinking, difficulty in reading comprehension, reduced learning and memory abilities and an overall feeling of being in a “fog.”Therefore, impairment may be seen in deregulated connections with other regions (functional connectivity); this functional impairment may serve as one cause of the cognitive decline in CFS. Here, the functional connectivity networks of this patient were sufficiently deregulated to cause the symptoms listed above.

Conclusions and significance: This case report increased our understanding of CFS from the perspective of brain functional networks by offering some possible explanations for cognitive deficits in patients with CFS. There are only a few reports of using source density analysis or qEEG connectivity analysis for cognitive deficits in CFS. While no absolute threshold exists to advise the physician as to when to conduct such analyses, the basis of his or her decision whether or not to use these tools should be a function of clinical judgment and experience. These analyses may potentially aid in clinical diagnosis, symptom management, treatment response and can alert the physician as to when intervention may be warranted.

For more information on our work, see this 2017 press release titled “Cognitive neuroscientists use systems level approach to search for cause of chronic fatigue syndrome: Researchers hope for new insights to explain the debilitating illness,” by Jordyn Holliday:


Jason lectures at the Ethical Humanist Society

Leonard JasonTitle of Talk: Understanding Unexplained Illness: From Knowledge to Action

Learn from a leading community researcher about why diagnosis is so complicated, how applied research can inform public policy to improve services, and his commitment to reduce stigma, empower citizens, and reduce barriers to full participation in community life.

Jason’s talk is located at: https://youtu.be/CSFWTs2BbCs

For more information about the talk, click on the image.

Affordable solutions to a major health problem

Click on image above 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.

#MillionsMissing protest in Chicago

Click on the photo above to view Leonard Jason’s comments at the Millions Missing rally.

Here is the link to more information about this rally:


Dozens Rally To Bring Attention To Incurable Disease


CHICAGO (CBS) — It’s called Myalgic Encephalomyelitis or Chronic Fatigue Syndrome and it affects 17 million people worldwide.

“This particular illness is more functionally debilitating than chronic congestive heart disease and cancer. The quality of life is significantly less. There’s over a million people in this country with this illness, 25% are homebound or bedbound,” said Leonard Jason, DePaul University, who’s been studying the disease for 25 years.

“We are currently studying it to see where it develops. We are watching several thousand undergraduates who might develop mono and we’re following them over time. A lot of people indicate the virus that causes Mono triggers this.”

Jason says most people don’t even know they have it.

“Ninety percent of people have it non diagnosed. There are a lot of people that are sick, don’t know why they are sick and that’s what they have.”

Amy Moony’s 11 year old daughter was diagnosed two years ago.

“She got a random bug when she was 9 years old and it never went away. We never knew what it was. It was something that changed her systems and triggered her autoimmune and caused a spiralling condition.”

Moony says they’ve had to change their life because of it.

“We have to be quiet around the house all the time. We can’t go biking as a family, we can’t go to the movies anymore. Our lives revolve around my daughter’s disease.”

That’s why she says she’s leading Chicago’s day of action, where in front of the Thompson Center, dozens of pairs of shoes line the pavement.

“The shoes represent people who suffer from ME and are home-bound and couldn’t come to the protest,” said Moony.

She says ME is one of the least funded diseases so more needs to be done to help people like her daughter.

“She lives it every moment of the day. She has constant pain. She can only go to school for an hour before her head and body rejects. That’s her day, then she goes back into bed until evening.

Jason says increased funding is needed for research, clinical trials and medical education into the disease.

“We want basic research so we can help people with treatment and eventually cure this illness but it’s a long process that’s going to need money to make it happen,” he said.

“We are hoping that people become aware of the name and that when somebody walks into their doctor’s office they aren’t told they just need to rest because rest will not fix the problem. It’s something we need more medical personnel to research and acknowledge and verify that this isn’t a person’s psychological condition. We need our government to put money behind this disease.”

Symptoms of ME include headaches, muscle/joint pain, unrefreshing sleep, sensitivity to light, cognitive impairment and constant fatigue, where normal tasks are exhausting to near impossible.

The Chicago rally was part of an global day of action to bring attention to ME and the people who suffer every day.



S.O.S. for At-Risk Teens


Click on the image above 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


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 on the image above to read more on Leonard Jason’s blog for Oxford University Press.