The results of a new study suggest that patients with chronic fatigue syndrome (CFS) often are dissatisfied with their encounters in the emergency setting. In fact, investigators reported that many of these patients decline to seek care in the ED because they believe their symptoms will be dismissed as psychosomatic. However, the study also shed light on the most common reason why patients with CFS visit the ED.
- Through an online anonymous survey, investigators queried CFS patients about their encounters in the ED and the nature of their symptoms.
- Out of 282 responses, 59% of those surveyed indicated they had visited the ED. Of these, 42% reported that their complaints were dismissed as psychosomatic.
- On a scale of 0-10, the respondents who had visited the ED rated their caregivers’ knowledge of CFS at 3.6, on average.
- The most common reason cited by far (33%) for coming to the ED was orthostatic intolerance, a condition characterized by dizziness and lightheadedness, particularly when patients stand from a supine position.
The results of the first-ever study on the presentation of chronic fatigue syndrome (CFS) in the ED suggests there may be ample room for improvement in the way emergency clinicians perceive and interact with those who report CFS symptoms.
Investigators from Georgetown University Medical Center used an online questionnaire to collect patient impressions on the nature of their symptoms, and on their encounters in the emergency setting.1
From Sept. 29, 2015, to Nov. 29, 2015, the authors collected 282 responses from anonymous participants, all of whom had been given a diagnosis of CFS. Investigators sought to understand the severity of core symptoms associated with the disease, including fatigue, malaise following mild exertion, cognitive dysfunction, sleep disturbances, and pain. However, the authors also queried patients about their experiences in the ED, with many reporting they were quite a bit less than satisfied.
Nonetheless, investigators suggested the data offer an opportunity for frontline providers to learn more about CFS and to achieve a better grasp of what brings most patients with this disease to the ED in the first place.
It was a small study, but the results suggest there is a fundamental lack of understanding on the part of many emergency physicians about what CFS is, according to James Baraniuk, MD, a professor of medicine at Georgetown University Medical Center and study co-author. “[CFS] doesn’t have a blood test and it doesn’t have a drug you can give. It just gets put into that big wastebasket term of psychosomatic,” he explains.
This can leave patients with CFS who have visited the ED because of worsening symptoms frustrated and dissatisfied with their care, according to the study findings. Of the 59% of those surveyed who had visited the ED, 42% reported their complaints were dismissed as psychosomatic. The investigators reported that only one-third of these patients indicated that they received appropriate treatment in the ED. Further, on a scale of 0-10, the respondents who had visited the ED rated their caregivers’ knowledge of CFS at 3.6, on average.
Among the 41% of respondents who reported that they had not visited the ED when they were ill, the responses indicated that they believed nothing could be done to ease their symptoms, there would be a lack of respect or compassion, and/or that emergency clinicians would not take them seriously. To be fair, Baraniuk, who treats patients with CFS, stresses that it is not just emergency providers who lack an understanding of CFS. The problem is common across the medical profession, including both general practitioners and specialists, he says. While making an accurate diagnosis of CFS is not that difficult for a practitioner who is familiar with CFS criteria, many providers do not realize there are diagnostic criteria for the condition.
“If you don’t know that there actually are criteria, then you are going to just not understand out of your own personal experience how somebody can be so tired, how somebody can be in so much pain, or how somebody can all of a sudden have problems thinking,” Baraniuk says. “If someone is in good health, it doesn’t make sense. If you don’t know anybody who has [CFS], it just doesn’t make sense.”
There are tools that can help practitioners improve their performance in this area. For example, a symptom severity questionnaire has been devised to help clinicians discern when a patient has CFS or to differentiate symptoms of CFS from other causes ().
Further, in one finding that was particularly enlightening, the study revealed that the most common symptom by far that CFS patients presented with when they visited the ED was orthostatic intolerance (33%). This is a condition that emergency practitioners understand well, Baraniuk notes. “It is a cardinal feature of dehydration, of any blood loss, or of someone who is in shock from any cause, whether it is heart attack, infection, or sepsis,” he observes.
Typically, for patients with orthostatic intolerance, they generally feel fine when lying down. However, when these patients stand, they become dizzy or lightheaded regardless of the underlying problem, Baraniuk explains. “Usually in the ED, what [the practitioner] will do is have the person lie down and then stand,” he says. “Normally, when a person stands up, the heart rate goes up by only about 10 beats per minute. But if it goes up by 30 beats or more, then you know they have lost a lot of fluid or a lot of blood or they have [some type of] autonomic or parasympathetic dysfunction ... so that they can’t control their heart rate properly when they stand.”
All these issues must be considered, but if the patient is dehydrated and shows the telltale change in heart rate when he or she stands, then the clinician should treat the condition by giving the patient fluids, Baraniuk notes. If the patient has CFS, fluids seem to work as well, although it is not entirely clear why.
“We think there is some reason the heart [of CFS patients] is not filling with blood sufficiently,” Baraniuk notes. “Giving them the extra fluid is able to perhaps pop up the tank so that they are able to circulate their blood more efficiently and reduce the sense of dizziness.”
When patients present to the ED with orthostatic intolerance, practitioners should rule out heart attack, stroke, infection, and the other potential causes. But if clinicians know the patient has CFS, they can quickly go through that differential diagnosis and anticipate that there is a high chance that CFS is at the root of the orthostatic intolerance-related complaints, Baraniuk says. Once a clinician makes the diagnosis, then standard treatment for orthostatic intolerance can be provided to alleviate the symptoms that brought the patient to the ED.
Survey respondents who visited the ED cited other symptoms, including muscle weakness (12%), fatigue (8%), post-exertional malaise (8%), muscle pain (8%), gastrointestinal (8%), headache (7%), joint pain (5%), and fainting (5%). In addition, investigators categorized 9% of “other” complaints, which included some heart-related issues. Although the survey results shed light on the most common reasons why patients with CFS come to the ED and how these patients feel about their encounters in this setting, investigators did not assess the nature or effect of the care the survey respondents received.
“It would be an inappropriate conclusion based on this data to say that the care received during these ED visits was inadequate or poor because we simply have no data to back up that conclusion,” explains Christian Timbol, MD, study co-author and emergency medicine resident physician at Thomas Jefferson University Hospital in Philadelphia. However, Timbol believes that most medical professionals, not just emergency physicians, could benefit from more education on the current body of information regarding CFS. Baraniuk agrees, noting that more continuing education about the medical basis for CFS would go a long way toward improving acceptance of the disease. In fact, he suggests that frontline providers should view the study results as a “teachable moment.” Also, it is important to distribute this information to patients, Baraniuk stresses.
“Recognizing that you have a worsening of your usual symptoms — that is part of CFS. The question is how bad do [these symptoms] have to get for the patient to feel like it is something different,” Baraniuk suggests. “For example, if the patient is often dizzy and lightheaded, but then she has chest pain, she goes to the ED for that combination. If she has dizziness and lightheadedness that come on after she has exerted herself more than she is used to, then it is [related to] her post-exertional malaise, which is part of the diagnosis of CFS.”
With a better understanding of CFS, patients can make the most appropriate decisions about when a trip to the ED or another healthcare setting is warranted.
- Timbol CR, Baraniuk JN. Chronic fatigue syndrome in the emergency department. Open Access Emerg Med 2019;11:15-28.