Persons suffering from chronic fatigue syndrome (CFS) have typically been struggling with their symptoms for a long time before being diagnosed. In fact, only about 30 per cent of CFS sufferers are properly diagnosed in the first year. To make matters worse, persons with chronic fatigue syndrome are sometimes stigmatized or told that they are exaggerating their condition and don’t have a ‘real illness’.
A key sign of chronic fatigue syndrome, or Myalgic Encephalomyelitis, is an ongoing feeling of extreme fatigue that often worsens after exercise and mental challenges but does not subside after sleep or rest. The cause of CFS is generally unknown, but medical experts believe it may result from a number of underlying conditions or a combination of triggers, including stress, viral infections, immune system problems and hormonal imbalances.
The Mayo Clinic has identified the following as key signs or symptoms of chronic fatigue syndrome:
- Persistent fatigue
- Extreme exhaustion after physical/mental exercise, that continues more than 24 hours
- Headache of a type or severity that was not previously experienced
- Cognitive impairment, involving loss of concentration and/or memory
- Inexplicable muscle pain
- Pain (without redness or swelling) that moves from one joint to another
- Sleep abnormalities, particularly unrefreshing sleep
- Sore throat
- Enlargement of lymph nodes in the neck or armpits
Unfortunately, no single objective test exists for identifying chronic fatigue syndrome and the condition is typically diagnosed after other health problems have been ruled out. The difficulty in diagnosing CFS, in addition to the skepticism by some in the medical community, has meant that symptoms are often dismissed or misdiagnosed.
Following an in-depth study of CFS, the American Institute of Medicine (IOM) completed a report titled, “Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness (2015), in which researchers estimated that between 836,000 to 2.5 million Americans suffer from CFS, of which most cases are undiagnosed. Researchers concluded that CFS “can severely impair patients’ ability to conduct their normal lives” and many sufferers are home-bound or bed-ridden at some point while struggling with this condition. In their report, the Institute urged physicians to diagnose myalgic encephalomyelitis or CFS if the patient’s symptoms meet diagnostic criteria and after an appropriate physical examination, medical tests and history. The Institute also proposed that a new code in the International Classification of Diseases should be assigned to this condition. In response to patients’ complaints that the term ‘chronic fatigue’ tends to belittle their suffering, the Institute recommended that this condition be renamed ‘systemic exertion intolerance disease’. The Institute made several other recommendations as well, including the need for the U.S. Dept of Health and Human Services to develop a toolkit for screening and diagnosing persons with this condition.
Three key symptoms identified by the IOM as required in making a diagnosis are:
- fatigue and a reduction in a patient’s levels of activity that lasts for at least 6 months;
- worsening of symptoms following exertion; and
- unrefreshing sleep, despite being exhausted.
Further, patients must exhibit at least one additional symptom, such as cognitive impairment (sometimes referred to as ‘brain fog’) or orthostatic intolerance (where patients cannot tolerate staying upright for long).
A Feb 27, 2015 CTV news report titled, “Chronic Fatigue Syndrome a real measurable illness: researchers”, recounted a story of a young woman who contracted malaria while in Africa, which triggered a disorder which left her constantly exhausted and without the energy to perform a simple function such as making herself tea. At one point, doctors believed that the patient’s symptoms were caused by a urine infection and another doctor diagnosed depression as the reason for her symptoms. However, none of these diagnoses made sense, particularly given the fact that the woman did not feel unhappy. Her symptoms prevented her from exercising and being active in the way she would have liked and she eventually had to leave her job.
Dr. Mady Hornig, who conducts research with the Center for Infection and Immunity and is an associate professor of Epidemiology at Columbia University, concluded that current findings indicate that chronic fatigue syndrome is a biological condition, not a psychological condition as was once thought. A recent study involving about 300 CFS patients discovered that patients who were in the early stages of the disorder (less than 3 years) had higher levels of immune molecules, called cytokines, particularly ‘inferno gamma’ which some studies have linked with fatigue that persons often suffer after a viral infection. These patients reported contracting an infection and then never recovering completely. The study suggests that blood tests may be used in future to help physicians make a diagnosis of CFS more quickly.
It is not difficult to imagine that a disorder that currently cannot be identified by a single medical test and for which there is no specific treatment or cure, presents a challenge when making a long-term disability claim. Like depression or fibromyalgia, chronic fatigue syndrome is an ‘invisible illness’ due to the difficulty in measuring its symptoms objectively. Many members of the public, the medical community, and particularly, insurance companies, have yet to catch up with respect to acknowledging and accepting CFS as a genuine condition with debilitating effects.
Anyone who is unable to complete the essential aspects of their job due to their CFS symptoms is entitled to claim long-term disability benefits under their benefits Plan. The most important first step for sufferers is to obtain a proper diagnosis from their physician. Don’t hesitate to seek out a second or third opinion until you find a doctor who understands the nature and effects of this disorder on your life and your ability to function at work.
You generally need to have been experiencing several persistent and serious symptoms, including fatigue, for at least 6 months before receiving a diagnose of CFS. Once diagnosed, another important step is to follow your doctor’s advice for ‘treatment’, which may include limiting exercise, forced rest periods and taking steps to reduce stress.
