What is Myalgic Encephalomyelitis?
J. EDWARD SOLOVEI – We have all heard the phrase “You don’t know what you got ’til it’s gone.” This declaration, while simple, is often truer than we realize. There are many, common examples that make this point. The phones we use everyday but could never build ourselves, the vehicles that turn what was a grueling trek for our ancestors into a nice joy-ride, and the clean water we effortlessly collect from our faucets and fridges are all examples of mind-boggling luxuries and technological advancements whose marvels we have grown accustomed to. Without these things, many of us (myself included) would be lost. This is no revelation, of course. Most people do take a step back from time to time to appreciate the blessings that have become commonplace. But what about something even more fundamental? Something more basic than even food or water we hardly ever, if at all, take the time to appreciate. Our ability to function. The energy we need to think, move, and speak in a manner that allows us to create a life worth living. What happens when that is taken away?
Energy, the primordial possession that facilitates every aspect of every life is exactly what is lost to those with Myalgic encephalomyelitis (ME). Often referred to as chronic fatigue syndrome, ME is the elusive, life-ruining culprit without a known cause or cure. Infact, the disease is so poorly understood that it lacks a universally accepted definition. One widely accepted set of diagnostic criteria devised by the National Academy of Medicine describes ME as the following:
- A substantial reduction in one’s ability to engage in pre-illness levels of activity
- A worsening of symptoms after any type of exertion (e.i. physical, mental, emotional exertion)
- Unrefreshing sleep
- Cognitive impairment (problems with thinking, memory, attention, etc.)
- Exacerbation of symptoms upon assuming an upright posture
Essentially, those with ME are very tired all the time. Which certainly doesn’t seem fun, but how could being a little tired ruin someone’s life? To put things in perspective, it may be helpful to compare ME with other, more familiar diseases. In 2015, a group of researchers found that quality of life for those with ME was worse than that of patients suffering from chronic kidney failure, schizophrenia, and every type of cancer. In fact, those with ME scored worse on quality of life assessments than any other group of patients in the entire study.
When one is chronically fatigued, their life is drastically altered in a variety of ways. Things as simple as taking a shower become monumental tasks, performance at work or school is drastically diminished, and often, patients are unable to get out of bed for extended periods of time. In most cases, those with ME will never get better. Instead, they are faced with the soul-crushing reality that the person they once were is no more.
It is estimated that approximately 20 million people currently suffer from chronic fatigue. This considerable prevalence makes ME an area of interest for many researchers. Currently, several avenues are being explored in order to uncover the disease’s etiology. These areas of interest range from a potential genetic link to stress induced hormone imbalances. For now, however, scientists have no definitive answer.
Beyond a lack of understanding, there are other roadblocks preventing patients from getting the relief they so desperately need. For instance, most doctors and nurses know very little about ME. Even more alarming, most medical schools do not include chronic fatigue syndrome in their curriculum. This lack of knowledge combined with the vague nature of the illness can sometimes lead doctors to not take patients seriously.
Myalgic encephalomyelitis is a grim reminder of just how unfair life can be. What makes this illness so debilitating is the way it permeates one’s entire existence. Everything we do in our day to day lives requires a level of energy and alertness those with chronic fatigue are simply incapable of. This, coupled with an unfavorable prognosis, makes ME a truly despair-inducing ailment. An ailment which serves as a reminder to the rest of us that everything we have must be appreciated, as there’s nothing that can’t be taken away.
Copy Editor: Elizabeth Conner
Photography Source: https://www.health.harvard.edu/blog/dont-take-fatigue-lying-2017041411485