Myalgic encephalomyelitis, or chronic fatigue syndrome (ME/CFS), is a disabling condition that affects every aspect of a person’s life. In the U. S., approximately 2.5 million people suffer from ME/CFS, but only 10% have been diagnosed. Although studies have not been performed about the number of affected people under the age of 18, the Centers for Disease Control (CDC) estimates that two out 100 children/adolescents have ME/CFS. It is a complex disease affecting adolescents and children as well as adults and has an unknown etiology. Unfortunately, calling this condition chronic fatigue syndrome trivializes the severity of this condition and does not recognize multi-system abnormalities that are often seen. Many pediatricians and clinicians are aware of ME/CFS but do not know how to diagnose and treat it in children and adolescents; it can take years for them to get a diagnosis. Few studies have examined ME/CFS in children. Rowe et al. created a primer regarding ME/CFS that was based on the consensus of the members of the International Writing Group for Pediatric ME/CFS. The goal of the primer is to help clinicians understand, diagnose, and manage the symptoms of ME/CFS in children and adolescents.
The hallmark symptoms of this condition are overwhelming fatigue with a significant reduction in mental and physical stamina. ME/CFS can begin abruptly or gradually with a rapid increase in the frequency and intensity of less severe chronic symptoms. There has also been an association with acute fever and viral-like symptoms as well as severe orthostatic symptoms preceding the onset of ME/CFS. A gradual onset is more common in children than in adolescents. Patients suffering from ME/CFS experience worsening of their symptoms after physical and mental exertion that can last up to weeks afterward with no relief by resting or sleeping. They can also have other symptoms including cognitive impairment, disturbed or unrefreshed sleep, and numerous neurological, immune, and autonomic symptoms with orthostatic intolerance a common comorbidity. Since there is a broad range of severity of symptoms, the impact ME/CFS has on the quality of life of the patient also varies.
There are currently no valid and reliable laboratory tests available to diagnose ME/CSF, and routine labs are usually normal. The differential diagnosis is based on clinical presentation and elimination of other diseases that cause fatigue including fibromyalgia, celiac disease, and hypothyroidism. A diagnosis of ME/CSF currently requires that the patient’s symptoms meet the criteria of conflicting case definitions developed for adults, which can overlook some symptoms seen in children/adolescents. Rowe et al. developed a group of core symptoms to diagnose ME/CFS:
• Malaise or fatigue that is exacerbated by physical and cognitive activity and orthostatic stress.
• Symptoms after any exertion can last from a few hours to weeks.
• Other symptoms include impaired cognitive function, pain, and sleep problems.
• Moderate to severe symptoms present every day, which fluctuate from day-to-day.
• Persistent symptoms for at least six months.
• Exclusion of other diseases that cause fatigue through a history, exam, and laboratory tests.
• Multi-organ systems can be affected causing orthostatic tolerance, postural tachycardia syndrome (POTS), inability to regulate body temperature, and GI symptoms.
These diagnostic criteria were created for clinicians to use in their practices.
There are no curative or approved treatments for ME/CSF, and due to the wide variation of symptoms, there is no single coping mechanism that works for every patient. Management requires patience and a willingness of the patient and his/her family to try several approaches to find the one that helps. The fatigue and sleep may be able to be regulated in some patients through avoiding a “push and crash cycle” meaning that when they have a good day, the patient should not attempt to do more than usual; it can cause worsening in symptoms. Some adolescents who have cognitive issues may benefit from stimulants commonly used to treat ADHD, but they can also trigger the “push and crash cycle” if not monitored closely. Gentle massage and heat can help alleviate muscle pain. Developing good coping strategies such as pacing activities, a healthy diet, maintaining a regular sleep schedule will minimize the physical stress on the body. Creating a treatment plan is unique for each child and should be based on his/her lifestyle and daily activities to help minimize, as much as possible, the debilitating symptoms to improve quality of life.
The impact of ME/CSF can be substantial. The cognitive deficits can affect the ability of children and adolescents to learn and attend school. If the patient develops ME/CSF before puberty, it can cause both physical and pubertal changes that impact the patient psychologically and his/her self-image. In comparison, the development of ME/CFS after puberty can cause a delay in normal, psychological development resulting in social isolation from peers and friends. Females can experience the stopping of menstruation, which creates other concerns.
ME/CFS is complex and challenging to diagnose, especially in children and adolescents. Depression is common with chronic diseases, and coping can be stressful causing difficult relationships within the family and loss of friendships, lengthy absences from school, and the loss of socializing with friends. These losses can trigger emotional crises. The patient may also complain of severe fatigue, inability to concentrate and focus in school, and pain in the muscles and soft tissues without appearing ill. Friends and family may not believe that there is anything wrong with the patient, which can leave him/her feeling hopeless and isolated. Education of physicians, family, and school personnel about the importance of medical and social support will help alleviate depression and anxiety and increase the quality of life.