Chronic Fatigue Syndrome – The Double Curse

Chronic fatigue syndrome (CFS), also called myalgia encephalomyelitis (ME) and ME/CFS, is a complex, fatiguing, long-term medical condition diagnosed by required primary symptoms and criteria, and often involves a broad range of symptoms. Distinguishing core symptoms are lengthy exacerbations or "flares" of the illness after ordinary minor physical or mental activity, known as post-exertional malaise (PEM); greatly diminished capacity to accomplish tasks that were routine before the illness; and sleep disturbances.  Orthostatic intolerance (difficulty sitting and standing upright) and cognitive dysfunction are also diagnostic. Other common symptoms may involve numerous body systems, and chronic pain is common.

Why the double curse?  Because there is no known way to definitively diagnose CFS, there is a stigma associated with the disease.   Chronic Fatigue Syndrome has probably existed since the beginning of mankind.  On the other hand, it has only received serious attention and been accurately described in the medical literature since World War II.  The sufferer frequently feels estranged from society and will hide his or her symptoms as best as can be done, and friends and family can be cruel in their ignorance of the disorder and misplaced judgement about the patients’ problems.  It makes a terrible situation all the worse.  Many people, even healthcare professionals will assume the patient has an underlying psychiatric disorder.  For the patient this can be unbearable.

According to an Institute of Medicine (IOM) report, an estimated 836,000 to 2.5 million Americans and 17 million worldwide suffer from ME/CFS.

It is estimated that the incidence of chronic fatigue syndrome is 75-85 percent higher among women than men.

While the cause is not understood, proposed mechanisms include biological, genetic, infectious, and physical or psychological stress affecting the biochemistry of the body. Diagnosis is based on the patient's symptoms because no confirmed diagnostic test is available. The fatigue in CFS is not due to strenuous ongoing exertion, is not much relieved by rest, and is not due to a previous medical condition.  Fatigue is a common

symptom in many illnesses, but the unexplained fatigue and severity of functional impairment in CFS are relatively rare in these other illnesses.

Persons with CFS may recover or improve over time, but some will become severely affected and disabled for an extended period.  No therapies or medications are approved to treat the cause of the illness; treatment is aimed at symptomatology. The CDC recommends pacing (personal activity management) to keep mental and physical activity from making symptoms worse. Limited evidence suggests that counseling, and graded exercise helps some patients.

It has been estimated that 836,000 to 2.5 million Americans and 250,000 to 1,250,000 people in the United Kingdom have CFS.   It most commonly affects adults between ages 40 and 60 years; it can occur at other ages, including childhood.  Other studies suggest that about 0.5% of children have CFS, and that it is more common in adolescents than in younger children.  Chronic fatigue syndrome is a major cause of school absence.  CFS reduces health, happiness, and productivity; but there is controversy over many aspects of the disorder. Physicians, researchers, and patient advocates promote different names and diagnostic criteria; and evidence of proposed causes and treatments is often poor or contradictory.

The future for the CFS is rather bleak.  There is no known diagnostic or therapeutic breakthrough on the horizon.  The patients will continue to suffer with debilitating symptoms and frequently with misplaced guilt, shame and the lack of support they need and deserve from their friends and family.  This is not a pretty picture.

 

Jan Ricks JenningsMHA, LFACHE

Senior Consultant

Senior Management Services 

Jan.Jennings@EagleTalons.net

 

JanJenningsBlog.blogspot.com

May 30, 2021