Chronic Fatigue Syndrome: A Tricky But Real Diagnosis

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:

  • anemia
  • autoimmune
  • 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.

Published by

Rachel Vassar

Rachel Vassar

Rachel Vassar is currently a 2nd year medical student at Boston University School of Medicine. She graduated from Stanford University in 2012 with a degree in Human Biology. CrowdMed offers her an opportunity to practice her diagnostic skills and identify patients with rare diseases that only a medical student may suspect to be plausible.

  • BullMoose

    First, I have to say that CFS is a SYMPTOM, not really a disease. It’s called a disease by MDs who don’t know the cause or how to cure it.

    Other causes of chronic fatigue include chronic use of acid reducers, especially those for acid reflux. The body NEEDS hydrochloric acid to properly digest vitamin B12. When acid reducers are taken over an extended period of time, some patients develop chronic fatigue. B12 (cobalamin) must be injected at least weekly at this point since the body can no longer properly digest it. A better suggestion is to reduce the digestive problems that are requiring the need for the acid reducers in the first place. Often, the addition of digestive enzymes with every meal and even HCl with the meal eliminates the reflux. There is evidence that the reflux is actually caused by insufficient Hcl as it is the presence of the acid that triggers the trap door to close; insufficient HCl, and the door doesn’t close all the way, allowing stomach acid and food to back up the esophagus. Also, if the stomach is digesting too slowly, indigestion can occur.

    Another cause of chronic fatigue is tick-borne diseases. They are under-diagnosed and so so so often misdiagnosed. Even if a patient is tested for Lyme disease, typically the ELISA Lyme-screening test is used, which has a 45% false-negative rate. And any test for anti-bodies is going to show a negative unless the person has had the disease for @ 4 weeks, and if the borrelia is chronic, the spirochetes can be in biofilm or cyst form, which will also miss detection. AND, since there are multiple tick-borne diseases, not just Lyme (Borrelia Burgdorferi)–Ehrlichiosis, Rock Mountain Spotted Fever, Babesia (parasitic protozoan), Bartonella–all of which can cause fatigue, this is a very important, often missed area. The typical MD doesn’t even know to look for these other TBDs. Most importantly, proper diagnosis of TBDs is done with a combination of clinical diagnosis and testing, so one must find a knowledgeable doc in order to receive proper diagnosis and treatment.

    • Charles Shaver

      I agree with you that CFS is but a symptom of an underlying cause, which may or may not require an alien substance or subclinical infection to present. Not certain if you too are a victim, my first experience with it was in the military at age twenty. Retrospectively, young, working-out and hungry, I was simply ingesting excessive amounts of chow three times a day until I became mysterious ill and was ultimately discharged after eight months as psychologically unsuitable. They were common foods which I finally learned I was sensitive to with cytotoxic blood testing in late 1981, a year into what is now a continuing struggle to stay only relatively healthy, with very, very mild food sensitivities being the underlying cause and added monosodium glutamate (MSG) being the trigger. For me, now, it begs the question: is CFS a matter of multiple underlying causes, multiple triggers and/or combinations of both. One thing I’m certain of, approving the expanded use of added MSG in 1980 knowing then it would make ‘a few people’ ill, the FDA (minimally) is no place to go for an honest answer to that question.

      • BullMoose

        Unfortunately, many autoimmune responses are initiated in the digestive system. Immune function begins with digestion (70% is in the digestive tract) and the American food system is itself very sick. Food sensitivities are just the tip of the iceberg for many people. Often complete life-style changes have to occur in order for autoimmune “diseases” to be brought under control. Yet, amazingly and unfortunately, I have sat in on appointments with at least a dozen gastroenterologists and a half dozen rheumatologists with a patient with numerous autoimmune “diseases” and not once has any of them ever talked diet to the patient. All they do is push pills–often with severe side-effects. In the end, what enabled the patient to improve was a dietary change. Had he been left to the medical profession, I suspect that particular patient would be dead by now. The FDA is a revolving door with both the pharmaceutical and food industries (often one and the same!); I have learned the hard way not to trust an FDA approval to mean squat. Heck, even the “food pyramid” is upside down! But why tell a patient to change their life-style when they can take a pill instead? The pill makes everybody in the “food chain” more money–well, except for the patient. My apologies for being a tad sarcastic tonight; just call it frustration with the state of our food and health systems in America.

        • Charles Shaver

          Thanks for replying; no apology necessary; I share your frustration, painfully, day to day and often meal to meal. Yes, there are a number of possible causes of CFS, ME, etc. but which of them best explains a national healthcare crisis marked with a 1980 FDA approval of the expanded use of allergy antagonistic, non-nutritious, non-preservative added ‘free’ (as opposed to natural ‘bound’) MSG and documented with CDC/NCHS data and a follow-up (to the NHANES II) NHANES III report on American health, since 1980?

          No offense intended but while infectious disease and injury stand strong alone as causes, along with CFS acid reflux disease strikes me as just another symptom of long term very, very mild food allergies being unknowingly aggravated by added MSG, to create a chronic acid body condition and an eventual deficiency of acid neutralizing factors. Easy enough to understand the origin and practice of so much bad healthcare, with the FDA still in denial and doctors still being so poorly trained in allergy, diet and nutrition.

    • John

      The underlying cause is not known and there may be subgroups. There are several infectious agents that may have high titers in a CFS case. I would go out on a limb to say that all true ME/CFS cases have low NK cell function.

      Some with Lyme, tick-borne disease, and other diseases are misdiagnoses with ME/CFS. However that doesn’t make the syndrome invalid.

      The name of the syndrome may be not descriptive of the disease process and that is unfortunate. If you read the criteria, you will understand the symptoms. The syndrome is not “fatigue.”

      Furthermore, there are already a few blood tests you can use to support a diagnosis of ME/CFS. This combination of abnormalities are not seen in any other disease that I know of.

      • BullMoose

        It’s just that, the history of CFS is that a bunch of Rheumatologists and IDSA docs used it as a label for people with chronic symptoms for which there was no obvious cause. Especially in the beginning, many patients (especially women) were also told to go see a shrink. That there may now, 20-30 years later, be some medical commonalities between people labeled with CFS doesn’t change the fact that it was initially “made up.” I am not kidding. And, no, I am not myself a sufferer of CFS–just a witness to the medical travesty of misdiagnosis.