In the first known study to look at how chronic fatigue syndrome (CFS) is handled in the emergency department (ED), researchers found that many health care workers have a profound lack of understanding of the disorder and that most CFS patients do not receive proper care in the ED.
The study, published in the journal Open Access Emergency Medicine, is based on a novel online questionnaire of CFS patients who rated their perceptions of care in a hospital’s emergency department.
CFS is a complicated syndrome characterized by extreme fatigue that can’t be explained by any underlying medical condition. The fatigue often worsens with physical or mental activity, and doesn’t improve with rest.
Symptoms may also include loss of memory or concentration, headaches, enlarged lymph nodes and unexplained muscle or joint pain.
According to the survey, two out of three respondents reported 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,” said the study’s senior investigator, allergist and immunologist James N. Baraniuk, M.D., a professor of medicine at Georgetown University Medical Center who treats people with 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.”
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).
The survey revealed the following:
- Only 59 percent of CFS patients had gone to an ED. Among those who did, 42 percent were dismissed as having psychosomatic complaints;
- 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 said.
The number one reason for going to the ED was 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. According to the survey, 33 percent had symptoms consistent with this condition
“This is of importance because it provides a starting point for diagnosis and treatment by ED physicians,” Baraniuk said. “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.”
Also common among those diagnosed with CFS are intolerance to exercise and intolerance to alcohol consumption, so these two symptoms can help distinguish CFS from other conditions, said study co-author Christian R. Timbol, M.D., 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.