Written by Michael Richardson
When the media talks about a mystery illness, it’s often in reference to some obscure disease with a horrific symptom. But there is an elusive, misunderstood illness that affects more than a million Americans of all ages, and researchers are hustling to get a grip on it, to create better pathways of care.
It goes by a few names. Outside the US many call it myalgic encephalomyelitis (ME), but it is more commonly known here as chronic fatigue syndrome (CFS). But many researchers say the name CFS trivializes the disease and the term ME may overstate what we know about pathophysiology. The Institute of Medicine (IOM) committee charged with developing a clinical case definition for physicians has recommended that the name be changed to systemic exertion intolerance disease (SEID). Most recently, the National Institutes of Health (NIH) has adopted the term ME/CFS.
So What the Heck Is It?
ME/CFS is a chronic multi-system disease characterized by profound fatigue that impairs a person’s ability to function normally, symptoms that worsen drastically after exertion, and disordered sleep that doesn’t refresh. ME/CFS must also include cognitive dysfunction or autonomic manifestations, but patients may experience many other symptoms such as pain, inflammation and allergy, according to the Institute of Medicine of the National Academies. Symptoms can persist for decades. The cause is unknown, though the latest research points to autoimmune conditions that impact the nervous system.
“CFS is one of the greatest scientific and medical challenges of our time,” says Stanford researcher Jose Montoya, MD. “Its symptoms often include not only overwhelming fatigue but also joint and muscle pain, incapacitating headaches, food intolerance, sore throat, enlargement of the lymph nodes, gastrointestinal problems, abnormal blood-pressure and heart-rate events, and hypersensitivity to light, noise or other sensations.”
How Is It Diagnosed?
Diagnosing SEID is the prominent challenge for physicians and researchers trying to spread awareness of the disease. There are no objective biomarker tests available to physicians, meaning that they can’t just administer a blood test to diagnose it.
The Institute of Medicine proposed new clinical diagnostic criteria for the disease, which requires that a patient have 4-5 core symptoms, including functional impairment from the fatigue, post-exertional malaise, and unrefreshing sleep. The patient must also have either cognitive impairment or orthostatic intolerance (symptoms worsen when standing). These symptoms must frequent and at least moderately severe to meet the core criteria.
Misconceptions and Barriers to Better Care
Because the cause of ME/CFS is unknown and because diagnosing the disease is very difficult, misconceptions persist, even among physicians.
“You could go to places in the U.S. and not be able to find any physician who would make the diagnosis,” says Lucinda Bateman, MD a physician and researcher in Utah who was on the Institute of Medicine committee that proposed diagnostic guidelines.
ME, CFS, or SEID also aren’t found in the majority of medical school curricula or text books. Some common myths about SEID include:
- It’s a psychological thing, purely mental.
- Exercise will cure it (exercise can actually make it worse in most cases).
But research across the globe is building momentum against these misconceptions. There is a push from the authoritative medical bodies to bring SEID into the light and improve care.
One study from Stanford in 2014 found that the brains of patients with the disease have diminished white matter as well as consistent white matter abnormalities in the right hemisphere. Researchers in Norway found that a medicine called Rituximab, originally made for treating certain cancers and rheumatoid arthritis, was effective in treating ME/CFS.
One of the biggest recent pushes comes from the National Institutes of Heath (NIH), which has launched multiple research initiatives in the last two years aimed at learning more about this elusive disease.
“Of the many mysterious human illnesses that science has yet to unravel, ME/CFS has proven to be one of the most challenging,” said NIH Director Francis S. Collins, MD, PhD. “I am hopeful that renewed research focus will lead us toward identifying the cause of this perplexing and debilitating disease so that new prevention and treatment strategies can be developed.”
A Better Medical Environment
Bateman, who’s whole career has been focused on properly dissecting and diagnosing the symptom of chronic fatigue, says there needs to be more complexity, more finesse when it comes to fatigue.
“Physicians don’t always even do a good and careful workup of fatigue,” she says. “They kind of make a stab at it.”
Bateman is a founder of the Bateman Horne Center, a nonprofit that works to research, educate and treat ME/CFS and fibromyalgia. She says medicine has moved towards increased focus on economy of time and resources, and this doesn’t create a good environment for properly understanding a patient’s fatigue. And this isn’t just important for ME/CFS, she says, as fatigue can be an important symptom for a variety of illnesses.
May 25, 2016
On May 25th, 2016 #MEAction is sponsoring community-organized protests across multiple US cities, including Dallas, San Francisco, Seattle, Atlanta and Boston. ME patients, advocates, caregivers, and allies will join together to protest of the lack of government funding for research, clinical trials and medical/public education, leaving ME patients without relief. Due to the nature of ME, patients can also attend virtually. Go to millionsmissing.meaction.net.