For patients struggling to get recognition that they are suffering from a serious physiological illness with real symptoms, the goal remains to have doctors take the problem seriously and prescribe an evidence-based approach to treatment that offers hope for relief.
Medical practitioners who remain disease deniers may think differently after learning about factors that can precede an attack of ME/CFS and the abnormalities now known to often accompany it. For example, one person in 10 who meets the diagnostic criteria for this syndrome reports that it followed an infection with Epstein-Barr virus, Ross River virus or Coxiella burnetii, a bacterium that causes Q fever.
The syndrome is also often accompanied by immune system disruptions, including chronically high levels of cytokines that change how the body responds to stress; poor function of natural killer cells that diminish the ability to fight infections, and abnormal activity of T-cells needed for an appropriate response to infection.
The core symptoms of the syndrome make it clear that this is not a matter of malingering. No one with an appreciation for life would pretend to be so debilitated. As the C.D.C. put it, “People with ME/CFS have fatigue that is very different from just being tired. The fatigue of ME/CFS can be severe; is not a result of unusually difficult activity; is not relieved by sleep or rest, [and] was not a problem before becoming ill.”
Furthermore, the agency explains, symptoms of the syndrome typically get worse “after physical or mental activity that would not have caused a problem before” the illness developed. Following even minimal exertion, patients tend to “crash” or “collapse” and may require days, weeks or longer to rebound. As mundane an activity as grocery shopping, attending a school event, preparing a meal or even taking a shower may force a retreat to bed.
Patients do not feel rested even after a good night’s sleep, and sleep is often abnormal — falling asleep or staying asleep may be difficult. Brain function is often described as “foggy,” causing problems with memory, quick thinking and attention to details. Some patients feel lightheaded, dizzy, weak or faint when they sit or stand.
Muscle and joint pain unrelated to an injury is a common accompaniment, as well as headaches that are new or worse than previously. Some people also have tender lymph nodes in the neck or armpits, a frequent sore throat, chills and night sweats, allergic sensitivities or digestive problems.
Estimates of the number of people in the United States afflicted with the syndrome range from less than one million to 2.5 million. The range of estimates is wide because of varying definitions of the disease and, as the Institute of Medicine (now the National Academy of Medicine) stated in a 2015 report, the condition has not been diagnosed in 90 percent of those affected by ME/CFS.
To arrive at an accurate diagnosis, the doctor should review the patient’s personal and family medical history, conduct a thorough physical and mental status exam, and order blood, urine or other tests. Patients should be asked about how they functioned before and after they became ill and what now makes them feel worse or better.
Correctly diagnosing ME/CFS, hard enough in adults, is even more of a challenge in children and adolescents, whose problems both within and outside of school can be misattributed to a neurological, learning or psychosocial disorder or simply laziness.
Youngsters may also get the syndrome and require a team approach with flexible educational resources and demands suited to each child’s ability to meet them.
There is currently no known cure for ME/CFS and patients should be wary of any therapy that claims otherwise. When embarking on treatment, the C.D.C. recommends first tackling the symptom or symptoms that are causing the most problems. If it is disrupted sleep, for example, start by setting a regular bedtime routine, going to bed and waking at the same time each day, limiting naps to 30 minutes a day and removing all distractions, including television, computers, phones and electronics, from the bedroom.
If muscle or joint pain is especially debilitating, consult a pain specialist if over-the-counter remedies are not sufficiently helpful. Those with memory or concentration difficulties might benefit from drugs used to treat attention-deficit/hyperactivity disorder, as well as relying on organizers and calendars to keep track of important matters.
To minimize fatigue, find easier ways to perform essential chores, like sitting while preparing food or showering and breaking up tasks into small increments. Whenever possible, shop online and order groceries and have them delivered. To reduce the risk of a crash, avoid trying to do too much when you feel better.