It’s no secret that a staggering number of Americans experience chronic fatigue.
But at what point is ongoing fatigue considered a disease? Here we will explore the diagnosis of Chronic Fatigue Syndrome and discuss several truths and myths about the condition.
Chronic Fatigue Syndrome (CFS) is a multi-system condition afflicting an estimated 0.4-2.0% of the population. Normal onset of the condition usually occurs between ages 25-55, and 70% of patients with CFS are women. Adolescents may experience CFS but at lower rates than adults.
To meet criteria, the fatigue must be severe, interrupting daily activities, and must be present for at least six months. Both physical and mental performance is decreased, and the extreme fatigue and associated symptoms must be present more than 50% of each day. In addition to the fatigue, many people with CFS experience memory difficulties, unexplained pain or soreness, tender lymph nodes, poor quality sleep, new onset headaches, or post-exertional malaise lasting more than 24 hours.
The name of the condition has undergone several revisions, including Myalgic Encephalomyelitis, which is more common in the UK. Early in 2015, the Institute of Medicine introduced a new name, Systemic Exertion Intolerance Disease, in an effort to improve the disease’s recognition as a legitimate diagnosis with a biological basis.
In the past 25 years, several biological markers and imaging tests have attempted to identify the biological basis of CFS, but limited progress has been made. Brain imaging studies have identified white and gray matter changes in CFS that are independent of psychological conditions such as depression. Abnormalities have also been identified in metabolic pathways, suggesting that energy production may be altered. Infectious triggers have been suggested, and many patients attribute the onset of the symptoms to an acute-phase illness. Genetics also likely factor in to the predisposition for developing CFS. Despite these discoveries, no accurate diagnostic test has been developed, nor is there any suggested treatment with even moderate efficacy.
Unfortunately there is a long history of these symptoms being ignored or misidentified as purely psychological. Part of this bias stems from CFS’s associated with decreased exercise capacity and a more sedentary lifestyle. Physicians may attribute the fatigue to deconditioning or to psychological factors including depression, which has many overlapping symptoms. Unfortunately the lack of known causes of Chronic Fatigue Syndrome and its relative obscurity in medical education prevent many physicians from accurately diagnosing it.
Here are several questions to consider in the diagnosis of Chronic Fatigue Syndrome:
- Is the fatigue present or not significantly improved after rest (including sleep)?
- Does the fatigue interfere with professional, social, and personal activities?
- Does the fatigue persist even with reduction or elimination of physical activity?
- Has the fatigue been present the majority of days for the past 6 months?
These four criteria must be present for a diagnosis of CFS to be made. Additional minor criteria may help steer the diagnosis towards CFS, including unrefreshing sleep, cognitive impairment, post-exertional malaise, or discomfort upon standing.
Many of these symptoms are diverse in their possible causes, so Chronic Fatigue cannot be automatically assumed if several of these criteria are met. A variety of conditions can present with many similar symptoms and must be considered as part of the differential diagnosis.
Here are other illnesses to consider and rule out before a diagnosis of CFS is made:
- primary sleep disorder (e.g. sleep apnea)
- neurological conditions
- psychiatric conditions/substance abuse
- intestinal diseases/malabsorption
- infectious processes
- endocrine disorders (such as diabetes, thyroid disease, menopause)
At this point, you may be wondering what, if anything, can be done about Chronic Fatigue Syndrome, if it is so challenging to diagnose. In addition to visiting a physician, these are several lifestyle modifications that may improve symptoms of Chronic Fatigue Syndrome.
- Iron supplementation. Even in women without true anemia, iron supplementation can help boost energy levels.
- Psychological support. Accepting psychological interventions as possible therapies for CFS does not suggest that the disease is psychological in nature. Rather, working with psychologists may help decrease stress and anxiety associated with the disease and may help the patient establish realistic expectations for improvement.
- Exercise therapy. Several studies have demonstrated that moderate aerobic exercise improves energy levels among adults with CFS.
- Sleep medications. Many people with CFS report unrefreshing sleep. Though sleep medications may not be a long-term solution, they can assist with sleep hygiene and help establish patterns of normal wake-sleep hours. Additionally treating the symptoms of CFS can begin to reduce the burden of the condition on daily activities.
Though no long-term solutions have been universally accepted as treatment for Chronic Fatigue Syndrome, the most important path towards improved symptoms is establishing a positive relationship with a physician or caregiver who can understand and address your needs. Patients benefit from individualized treatment plans that allow them to achieve the goals that are most important. If you think that you may be experiencing Chronic Fatigue Syndrome, do not hesitate to explain your symptoms to your physician. Until you find a physician who is ready to be your partner in treatment, do not settle. Though poorly understood, Chronic Fatigue Syndrome is a serious medical condition deserving the recognition that has been earned by other chronic illnesses.