Myalgic encephalomyelitis (ME), previously called chronic fatigue syndrome (CFS), is a complex, debilitating multi-system, chronic disease with a serious impact on one’s quality of life. While “ME/CFS” is the preferred name by many, this disease has also been called systemic exertion intolerance disorder (SEID), chronic fatigue immunity deficiency syndrome (CFIDS), or post-viral fatigue syndrome (PVFS).
An estimated 836,000 to 2.5 million Americans suffer from ME/CFS.
About 90% of people with ME/CFS have not been diagnosed, yet ME/CFS costs the U.S. economy about $17 to $24 billion annually in medical bills and lost incomes. Some of the reasons that people with ME/CFS have not been diagnosed include: limited access to healthcare, and a lack of education about ME/CFS among healthcare providers.
Most medical schools in the United States do not have ME/CFS as part of their physician training. The illness is often misunderstood, and might not be taken seriously by some healthcare providers. More education for doctors and nurses is urgently needed so they are prepared to provide a timely diagnosis, and then appropriate care for patients.
At this time, the cause of ME/CFS is not fully understood. There is no diagnostic test, no FDA-approved treatment, so patients often suffer for life.
Who Gets ME/CFS?
Everyone is at risk. ME/CFS may begin as early as age 10, and as late as age 77. Although research has shown that ME/CFS is about two to four times more likely to occur in women than men, ME/CFS strikes people from every age, racial, ethnic, and socioeconomic group.
The seven key symptoms for making a diagnosis of ME/CFS are:
1. Post-exertion malaise or symptom exacerbation: the key diagnostic feature of ME/CFS is the way in which symptoms worsen after activity is increased beyond what the patient can tolerate. Such activity, physical or mental, has a characteristically delayed impact, which may be felt later the same day, the next day or even later. This is followed by a period of relative recovery which may last for days or even weeks.
2. Activity-induced muscle fatigue: precipitated by trivially small exertion (physical or mental) relative to the patient’s previous activity tolerance: which may be accompanied by muscle pain.
Affects on the nervous system
3. Cognitive dysfunction: problems with short-term memory, working memory (the ability to deal with tasks quickly), problems with concentration and attention span, inability to plan or organize thoughts or problems with word-finding abilities anomia (difficulty in naming common objects) and dysnomia (inability to give objects a correct name).
These problems are often referred to as ‘brain fog’ by people with ME/CFS. Cognitive dysfunction is exacerbated by physical exertion, stress, and can be more prominent where there is clinical depression. Cognitive dysfunction alone is often severe enough to cause a substantial reduction in occupational, educational, personal and social activities, and so debilitating for others, that any one of these activities is impossible.
4. Pain: that can be persistent and difficult to control. Pain is often muscular, but it can also be rheumatic or neuropathic (nerve pain)
5. Sleep disturbance: non-restorative sleep, with hypersomnia (early in the illness) and insomnia, reversal of sleep rhythm (especially in children), vivid dreams and ‘restless legs’.
6. On-going, flu-like malaise: feelings of ‘being unwell’ that is accompanied by sore throat, tender lymph glands and problems with temperature control (e.g. feeling feverish, sweating episodes). These symptoms are also found with Ebstien Barr Virus
7. Autonomic symptoms: orthostatic intolerance (an inability to sustain upright activity), which occur after standing up from a recumbent or resting position, or after prolonged standing. These symptoms include lightheaded, spatial disorientation, feeling faint, sweating, palpitations and fainting.
While extremely frustrating, individuals with ME/CFS learn over time what works best for them. What is effective for one patient may not be effective for someone else. Sleep problems, pain, heart-rate irregularities, gastrointestinal difficulties, allergies, and depression are some of the symptoms that can potentially be relieved by treating with medications.
Because these symptoms are common with other illnesses, which also lack a diagnostic test or bio-marker, one could be diagnosed with one of the following, and so the whole picture might be overlooked.
Fibromyalgia—Orthostatic intolerance--IBS--Interstitial-cystitis--TMJ joint disorder Chronic pelvic pain--MS--Multiple chemical sensitivity disorder