Almost everyone feels sleepy in the morning without their first cup of coffee. But there’s a big difference between “I need caffeine” fatigue and “can’t get out of bed for six months” fatigue.
Myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS), is a devastating illness. It is made even more painful by the fact that many doctors and researchers don’t grasp that ME/CFS is more than just feeling tired. The condition is a complex cluster of symptoms that includes flu-like symptoms, an inability to exercise, extreme sensitivity to stimuli such as light and sound, and even cognitive impairment.
One of the largest battles that patients of ME/CFS face is convincing people that they actually have a physical illness. Many doctors are quick to dismiss it as a psychological problem, a habit that was only reinforced by a 2011 study in the Lancet. This trial, funded by UK taxpayers and known as the PACE trial, recommended that patients need to exercise more and see a psychologist. Recently, scientists and advocates have argued that the data from this study was severely flawed.
ME/CFS is not a mental illness, it’s a nervous system disease. Patients and ME/CFS advocates have been trying to get doctors to understand this fact for years. But the confusing range of symptoms, paired with the fact that there is no definitive diagnostic test, has left both sides frustrated.
Science has now gained greater insight into the biological mechanisms behind ME/CFS, however. A study published in Proceedings of the National Academy of Sciences last week showed that patients with severe ME/CFS have differences in 17 cytokines within their bodies compared to healthy subjects. Advocates and patients hope that this finding might be the first step towards a diagnostic test and, eventually, a cure.
Cytokines are small proteins used for cell signaling. They are linked to inflammatory responses in the nervous system, as well as feelings of pain. Researchers from Stanford, led by Jose Montoya, examined 51 cytokines in 392 healthy patients and 192 patients with ME/CFS in order to see if there were differences between the two groups. They found that cytokines are not only linked to the disease itself but also to disease severity.
The researchers discovered that two of the cytokines differed between ME/CFS patients and their healthy counterparts. Even more remarkable, they found that 17 cytokines were associated with the severity of ME/CFS. Of those 17 cytokines, 13 are related to inflammation. As the levels of cytokines increased, so did the severity of the disease. This is important because there is currently no biological marker or test to determine if someone has ME/CFS — the disease is diagnosed entirely based on descriptions of symptoms.
“If you have an illness that doesn’t have a marker, it’s very easy to conclude that it’s psychogenic,” said Dr. Leonard Jason, a professor of psychology at DePaul University and the director of the university’s Center for Community Research. Jason, who is not affiliated with this study, is also a board member of the International Association for CFS/ME, and a former patient of the disease.
“This research validates what patients are experiencing,” Jason told Seeker.
More than a million Americans have ME/CFS, and millions more struggle with the disease worldwide. Because there has been no biological marker found until now, many patients are dismissed by health care providers and family members as having depression or another psychological disease. Despite the fact that severe fatigue is only one of many neurological symptoms, patients often feel misunderstood.
“This really confirms what patients have known all along, that it’s a physiological disease,” said David Tuller, a senior fellow at the Center for Global Health at UC Berkeley and a journalist who has written extensively about ME/CFS.
“Patients are ecstatic,” about the findings of the trial, Tuller told Seeker.
The publication of this research paper coincides with the Journal of Health Psychology dedicating a whole issue to ME/CFS this month. The special edition of the journal focuses on the controversy surrounding the 2011 PACE trial, which Tuller, Jason, and other experts have decried as poorly designed, with recommended treatments that are actually harmful to patients. One of the hallmarks of ME/CFS is an inability to tolerate exertion. A patient described how even swimming for five minutes could leave her bedridden.
The fact that this new study and the journal issue came out at virtually the same time is significant. The study and the journal “reinforce each other,” Tuller said.
“There’s a movement afoot,” said Jason.
The scientific community seems to finally be taking ME/CFS sufferers seriously.