Nav: Home

Perceptions of chronic fatigue syndrome in the emergency department

January 10, 2019

WASHINGTON - Findings from a novel online questionnaire of people with chronic fatigue syndrome (CFS) who rated their perceptions of care in a hospital's emergency department suggest the majority of these patients do not receive proper care, say researchers from Georgetown University Medical Center.

The study, published in the journal Open Access Emergency Medicine, is the first known investigation of the presentation of CFS in the emergency department (ED). The findings highlight a profound lack of understanding of CFS by health care workers, says the study's senior investigator, allergist and immunologist James N. Baraniuk, MD, a professor of medicine at Georgetown who treats people with CFS.

He says two-thirds of respondents report they either would not go to an ED because they believed they wouldn't be taken seriously, or had previous unsatisfactory experiences. Only a third of patients in the survey said they received appropriate treatment in the ED.

"The high proportion of patients who were basically told 'It is all in your head' by ED staff indicates that there is much misunderstanding and misgivings about the diagnosis of CFS. These patients should feel they are respected and that they can receive thorough care when they feel sick enough to go to an ED," he says.

Baraniuk says more training is needed for ED staff and physicians to better understand the disorder.

The 282 participants in the survey all had physician-diagnosed CFS. Participants were predominantly women (87 percent), educated (70 percent had at least a college degree), and had a primary care physician (93 percent).

From the survey, researchers determined that:
  • Only 59 percent of CFS patients had gone to an ED. In this group, 42 percent were dismissed as having psychosomatic complaints.
  • 33 percent had symptoms consistent with a condition known as orthostatic intolerance, which occurs when a person feels faint when standing or sitting upright because not enough blood is reaching the brain and heart. The symptoms only improve when a person lies down.
  • CFS patients who went to the ED collectively rated caregivers' knowledge about CFS at 3.6 on a 10-point scale.
  • 41 percent of CFS respondents did not go to the ED when ill because they felt nothing could be done or they would not be taken seriously.
"An already-available CFS Symptom Severity Questionnaire can be used in the ED to assist with the diagnosis of CFS, and to differentiate exacerbations of CFS symptoms from medical emergencies such as heart attacks or infections," Baraniuk says.

The number one reason for going to the ED was orthostatic intolerance.

"This is of importance because it provides a starting point for diagnosis and treatment by ED physicians," Baraniuk says. "This condition is something that can be readily addressed by ED caregivers. There is a real need for physician education that will improve their efficiency in identifying and treating CFS and in distinguishing CFS symptoms from other diseases in the exam room."

"We found that intolerance of exercise and intolerance to alcohol consumption were common to those diagnosed with CFS so this may help distinguish CFS from other conditions," says study co-author Christian R. Timbol, MD, who worked with Baraniuk as a medical student before becoming an emergency medicine resident physician at Thomas Jefferson University Hospital in Philadelphia.

Chronic fatigue syndrome affects between 836,000 and 2.5 million Americans, according to a National Academy of Medicine review of over 9,000 articles covering 64 years of research.

This reviewers renamed the syndrome "Systemic Exertion Intolerance Disease" to emphasize the disability, post exertional malaise or exhaustion that follows mild exertion, cognitive dysfunction and orthostatic intolerance (blood pressure and heart rate changes that cause dizziness) that are the salient features of the illness.
-end-
Neither Baraniuk nor Timbol have any potential financial conflicts of interest to disclose.

Funding was provided by The Sergeant Sullivan Circle, Dr. Barbara Cottone, the Dean Clarke Bridge Prize, and the National Institute of Neurological Disorders and Stroke (RO1NS085131).

About Georgetown University Medical Center

Georgetown University Medical Center (GUMC) is an internationally recognized academic medical center with a three-part mission of research, teaching and patient care (through MedStar Health). GUMC's mission is carried out with a strong emphasis on public service and a dedication to the Catholic, Jesuit principle of cura personalis -- or "care of the whole person." The Medical Center includes the School of Medicine and the School of Nursing & Health Studies, both nationally ranked; Georgetown Lombardi Comprehensive Cancer Center, designated as a comprehensive cancer center by the National Cancer Institute; and the Biomedical Graduate Research Organization, which accounts for the majority of externally funded research at GUMC including a Clinical and Translational Science Award from the National Institutes of Health. Connect with GUMC on Facebook (Facebook.com/GUMCUpdate), Twitter (@gumedcenter) and Instagram (@georgetownmedicine).

Georgetown University Medical Center

Related Chronic Fatigue Syndrome Articles:

Chronic fatigue syndrome linked to imbalanced microbiome
Scientists at the Center for Infection and Immunity (CII) at Columbia University's Mailman School of Public Health have discovered abnormal levels of specific gut bacteria related to chronic fatigue syndrome/myalgic encephalomyelitis, or ME/CFS, in patients with and without concurrent irritable bowel syndrome, or IBS.
Scientists discover biological evidence of 'atypical' chronic fatigue syndrome
Scientists at the Center for Infection and Immunity (CII) at Columbia University's Mailman School of Public Health are the first to report immune signatures differentiating two subgroups of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS): 'classical' and 'atypical.' This complex, debilitating disease is characterized by symptoms ranging from extreme fatigue after exertion to difficulty concentrating, headaches, and muscle pain.
Anakinra does not seem to improve fatigue severity in women with chronic fatigue syndrome
The anti-inflammatory biologic drug anakinra does not seem to reduce fatigue severity in women with chronic fatigue syndrome.
International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis hosts conference
Chronic fatigue syndrome (CFS), sometimes referred to as myalgic encephalomyelitis (ME), a mysterious, debilitating and misunderstood disease that affects an estimated 1 million Americans, will be the focus of an international conference on Oct.
Management of fatigue and sleep in chronic illness
The College of Nursing at the University of Massachusetts Amherst recently was awarded a five-year, $1.23 million grant from the National Institute of Nursing Research to create a new center where scientists will develop technologies to help people with chronic illness manage fatigue and impaired sleep.
Researchers identify characteristic chemical signature for chronic fatigue syndrome
Chronic fatigue syndrome (CFS) is a mysterious and maddening condition, with no cure or known cause.
Chronic fatigue syndrome flare-ups caused by straining muscles and nerves
Mild to moderate muscle and nerve strain provokes symptom flares in individuals with chronic fatigue syndrome.
Chronic fatigue syndrome is in your gut, not your head
Physicians have been mystified by chronic fatigue syndrome, a condition where normal exertion leads to debilitating fatigue that isn't alleviated by rest.
NIAID funding to Jackson Laboratory researcher to investigate chronic fatigue syndrome
Professor Derya Unutmaz, M.D., of The Jackson Laboratory for Genomic Medicine, will receive five years of funding -- totaling $3,281,515 from the National Institute of Allergy and Infectious Diseases -- to find better ways to diagnose and treat myalgic encephalomyelitis, the debilitating and mysterious condition more generally known as chronic fatigue syndrome.
Chronic fatigue patients more likely to suppress emotions
Chronic fatigue syndrome patients report they are more anxious and distressed than people who don't have the condition, and they are also more likely to suppress those emotions.

Related Chronic Fatigue Syndrome Reading:

Best Science Podcasts 2019

We have hand picked the best science podcasts for 2019. Sit back and enjoy new science podcasts updated daily from your favorite science news services and scientists.
Now Playing: TED Radio Hour

Don't Fear Math
Why do many of us hate, even fear math? Why are we convinced we're bad at it? This hour, TED speakers explore the myths we tell ourselves and how changing our approach can unlock the beauty of math. Guests include budgeting specialist Phylecia Jones, mathematician and educator Dan Finkel, math teacher Eddie Woo, educator Masha Gershman, and radio personality and eternal math nerd Adam Spencer.
Now Playing: Science for the People

#518 With Genetic Knowledge Comes the Need for Counselling
This week we delve into genetic testing - for yourself and your future children. We speak with Jane Tiller, lawyer and genetic counsellor, about genetic tests that are available to the public, and what to do with the results of these tests. And we talk with Noam Shomron, associate professor at the Sackler School of Medicine at Tel Aviv University, about technological advancements his lab has made in the genetic testing of fetuses.