New research holds out hope for those suffering from an insidious and debilitating illness known as chronic fatigue syndrome (CFS), or myalgic encephalomyelitis (ME). The primary symptom is difficult to prove and sometimes impossible to get healthcare providers to take seriously—chronic, disabling fatigue that doesn’t improve after rest. Fatigue tends to worsen after any type of exertion, physical or mental, and other symptoms can include sleep disturbances, brain fog, pain, and dizziness. Less common symptoms like indigestion, diarrhea, constipation, and heart problems complicate the diagnostic process, leaving many physicians baffled. It’s most commonly diagnosed in middle-aged white women, but it can strike people of any age, sex, or ethnic background.
According to the CDC, chronic fatigue syndrome affects somewhere between 836,000 and 2.5 million people in the United States, and they predict that a shocking 90 percent of cases go undiagnosed. This is probably because education for care providers about CFS can be practically non-existent. In many medical schools across the country, CFS isn’t included as part of their physician training, and since the symptoms are invisible, they can be easily dismissed by caregivers.
Many people eventually diagnosed with CFS live for years without a diagnosis, and some are referred to a psychiatrist instead of being treated for their physical symptoms. Part of the difficulty for care providers is that, up until very recently, there has been no reliable way to test for CFS – no conclusive physical exam findings, no unique symptoms, and no blood test. Physicians are often left to rule out all other conditions that can cause chronic fatigue and other symptoms before turning to a CFS diagnosis when nothing else fits. Even after diagnosis, many are left to wonder if their diagnosis is correct without any way to confirm it.
Research published last month (July 2017), however, may change the face of chronic fatigue syndrome for those who suffer from it and those yet to be diagnosed. Researchers at Stanford have found 17 immune-signaling proteins (cytokines) associated with the illness. Their concentrations in patients’ blood seem to directly relate to the severity of symptoms, offering the first hint that a diagnostic blood test may be possible in the near future.
A reliable blood test would be a revolution in care for patients with CFS. There are few reliable treatments, but patients may begin to have access to them earlier in the disease’s progression. And those who have spent years questioning their diagnosis, some under the care of physicians who doubt the legitimacy of the illness, may be able to gain some peace of mind, reassurance that their symptoms are real and not necessarily indicators of another underlying disease or of a psychological condition.
Not only does this research lay the foundations for a blood test that could give care providers a very good indication of whether or not a patient has CFS, but it also supports the idea that the disease is inflammation-driven, something physicians have long suspected.
The study’s lead author, Jose Montoya, MD, professor of infectious diseases, oversees the Stanford ME/CFS Initiative. His first encounter with the disease was with a patient in 2004, and since then he has worked with hundreds of patients with CFS. To uncover this groundbreaking new information, he and the study’s other authors added a unique spin to a classic study design. Instead of simply comparing the bloodwork of individuals diagnosed with CFS to that of healthy individuals, they took into account the severity of symptoms in the CFS patients and examined the data for patients with severe disease progression separately. This allowed them to identify disease markers that would have been missed if they had simply compared averages of the results from both groups.
The authors anticipate that their findings will be used to improve the diagnosis and treatment of chronic fatigue syndrome and even hope that their study design may help researchers examining other diseases.
“For decades, the ‘case vs. healthy controls’ study design has served well to advance our understanding of many diseases,” Montoya said. “However, it’s possible that for certain pathologies in humans, analysis by disease severity or duration would be likely to provide further insights.”
Until a blood test is available, the most important step you can take if you suspect you may have CFS is to work with a physician who takes CFS seriously and has treated other patients with the disease.