For years, people with chronic fatigue syndrome have been ridiculed as hypochondriacs and told the symptoms are all in their heads.
But now the prestigious U.S. Institute of Medicine has issued a new report saying the condition, also known as myalgic encephalomyelitis, is very real – a "legitimate, serious, complex, systemic disease that often can profoundly affect the lives of patients."
ME/CFS is also quite common, affecting somewhere between 836,000 and 2.5 million Americans and costing the U.S. economy a whopping $24-billion a year. According to Statistics Canada, there are roughly 411,500 Canadians who suffer from ME/CFS.
The new report may provide some vindication for much-maligned sufferers by stating unequivocally that it is a cluster of physical symptoms, not a psychosomatic condition.
The panel also recommends adopting a new name: systemic exertion intolerance disease (SEID). Why? Because the current names are wrong: Chronic fatigue trivializes the severity of the condition and myalgic encephalomyelitis is inaccurate. Myalgia (muscle pain) is not a key characteristic of the disease and there is no evidence people suffer encephalomyelitis (swelling of the brain and spinal cord).
Despite the highly placed call to take it seriously, a large measure of frustration remains, as do many questions – because there still no clearly identifiable cause.
The U.S. Institute of Medicine panel said mononucleosis in adolescents is strongly associated with chronic fatigue syndrome, but beyond that, the list of possible triggers remains long, including "immunization, anesthetics, physical trauma, exposure to environmental pollutants, chemicals and heavy metals and, rarely, blood transfusions." There is no question that the condition develops most often after a viral illness, but the once-popular theory that the syndrome was caused by infection with the retroviruses XMRV and pMLV has been debunked.
It is precisely because of this laundry list of possible causes – some of which are dubious, at best – that many in the medical community, as well as insurers, who face a growing number of disability claims, remain skeptical.
When a vaguely defined illness can be caused by everything and nothing, it is hard to not think people are making it up, although the report set out to put that point of view to rest.
Few question that patients are suffering from debilitating fatigue, but there is still a lot skepticism that a single condition exists when there is no clear indication of the cause, and the doubt won't dissipate overnight. It doesn't help that names like chronic fatigue, fibromyalgia and multiple chemical sensitivity are used almost interchangeably. But there are a number of conditions that don't have a single cause and can't be diagnosed with a blood test – that doesn't makes them any less real.
What the panel has done that is most useful is provide a set of diagnostic criteria to determine whether someone is suffering from ME/CFS/SEID.
One of the biggest frustrations of patients is that it takes forever and a day to get an actual diagnosis – as long as five years – and that can be exhausting and crushing, especially for someone who is systemically incapable of exertion.
The Institute of Medicine report lays out key elements for diagnosis:
- An inability to engage in preillness levels of activity that persists for at least six months, accompanied by fatigue;
- The worsening of symptoms after any type of exertion (physical, mental or emotional). This symptom, postexertional malaise, is seen as key;
- Unrefreshing sleep;
- Cognitive impairment;
- The inability to stand upright for other than short periods of time, a symptom known as orthostatic intolerance.
These parameters should help make clear that not everyone who is tired suffers from ME/CFS/SEID, nor are those with these symptoms all malingerers. (And this is not to suggest there are not some layabouts and shirkers who try to exploit these conditions – just that they are a small, fraudulent minority.)
Diagnosis is just one part of the puzzle. There is no cure, but some of the symptoms can be treated. Anti-depressants and sleeping pills are commonly prescribed, as is psychological counselling and lifestyle changes, such as minimizing stress and avoiding caffeine, nicotine and alcohol. Treatment is complicated by the fact that people with chronic fatigue often suffer from other chronic illnesses, especially depression.
What's inarguable is that the disorder, regardless of what it is called, can often be devastating for sufferers.
If the recommendations of the report are properly heeded, there should be three immediate impacts: Prompt diagnosis and quicker treatment; improved understanding of the disease by the public and health professionals, and an investment in research to help unravel many of mysteries that remain.