Oct. 20, 2017 -- It is a very complex, very real physical disease, and one that for years has caused uncertainty, confusion and even dismissal by many medical professionals. But now, thanks to a new, multi-year grant, there is hope for a better understanding and treatment for chronic fatigue syndrome, or CFS.
In late September, the National Institutes of Health committed $7.2 million in grants for fiscal year 2017, with plans to fund the work for five years. If funding remains steady, grants will total more than $35 million.
The money comes with a goal: Find the biological roots of CFS, which is also known as myalgic encephalomyelitis, or ME. The federal agency announced the grant to fund the creation and work of three collaborative research centers and another center that will coordinate research data.
“NIH is serious about” the disease, says Vicky Whittemore, PhD, an expert on the disorder and leader of an NIH working group that coordinates the agency’s activities related to the disease.
The three research centers -- at Columbia University in New York City, Cornell University in Ithaca, NY, and the Jackson Laboratory, an independent nonprofit research institution in Bar Harbor, ME -- will approach the disease from different angles. A clinical study is also underway on the NIH’s campus in Bethesda, MD.
“Our strategy, with these three centers and the study led by Avindra Nath, MD, at NIH, is to really understand the underlying cause or causes in large numbers of individuals,” says Whittemore, who notes that the disease affects different people in different ways. “We hope that research leads to clinical trials of targeted treatments. That’s the long-term goal.”
Ian Lipkin, MD, heads the effort at Columbia University.
“With the NIH paying attention to this, the rest of the medical community should realize that this is something that needs to be addressed,” says Lipkin, who in recent years has struggled to recruit researchers to study the disease. “This will have an impact on medical schools and the medical community.”
That’s a crucial point, because less than a third of medical schools are now taking a look at ME/CFS. Fewer than half of medical textbooks cover it. That’s led to widespread ignorance and misconceptions about the disease, which affects as many as 2.5 million Americans.
Raising awareness, Lipkin hopes, will help raise more funds for research. As encouraging as the NIH grant is, more money will be needed.
“With current funding, we’re going to make some headway, but I don’t think it will get us as far as we need to go,” he says.
“We don’t understand all the types of ME/CFS, all the sub-types, what the contributors are, like genes and the environment,” says Lipkin. “We don’t have great markers that we can use to diagnose the disease. We don’t have studies that show the effectiveness of strategies used to relieve symptoms. There’s a lot of work to be done. We have some investment now, but it’s really quite modest.”
A Poorly Named Disease
For people with the disease, physical, mental, or emotional exertion often takes a huge toll. Something as simple as climbing the stairs, trying a crossword puzzle, or stressing over a task at work can cause crippling, lasting fatigue. Sleep does not help get rid of it. Problems with memory and thinking, often called brain fog, also can happen.
The CDC has identified symptoms that most people with the condition have. Usually, they're not able to do things they could before, their symptoms get worse after physical or mental tasks that they were able to do before, and they don't feel better after a full night’s sleep. These symptoms are required for a diagnosis, the CDC says. To be diagnosed with ME/CFS, a patient must also either have problems with thinking and memory or must show that symptoms get worse when standing or sitting upright, or both.
A partial list of other possible symptoms includes:
- Joint pain
- Swollen lymph nodes
- Sore throat that doesn’t get better
- Mood problems, including irritability and depression
“People don’t understand that this is not the same thing that you and I get after we exercise or after a long day at work,” says Zaher Nahle, PhD, chief scientific officer and vice president for research at the Solve ME/CFS Initiative, a nonprofit research and advocacy group. “This is a disabling disease. The name itself implies that these people are just tired. That is a huge misunderstanding.”
Different Symptoms for Different People
The disease is complex and confusing. It’s not even clear that it’s a single disease. It often comes on suddenly, after an illness, but it can also form gradually. For some patients, symptoms are constant; for others, they come and go. In some people, symptoms may be triggered by standing up and improved by lying down. And the symptoms and how bad they are can vary a lot from patient to patient and can resemble other diseases.
“It is really hard to find one patient who is identical to another or even similar,” says Jose Montoya, MD, director of the Stanford ME/CFS Initiative. Montoya researches the disease and works with patients who have it. “The disease has some central characteristics, or symptoms, but it has a lot of flavors, a lot of colors.”
Montoya’s specialty is infectious diseases. Researching and treating ME/CFS had not been part of his career plan.
“The only reason I got into this is I saw these patients’ suffering, how sick they were,” he says. “All I had to do was compare their lives now to before they got sick to know that it was a real disease.”
Searching for a Cause
The hunt for causes drives the research in Montoya’s lab at Stanford and Lipkin’s lab at Columbia. Both have had recent successes.
Earlier this year, Montoya and his team published research that identified 17 cytokines -- a type of protein -- connected to the immune system that may be involved with the disease. Their findings suggest that inflammation plays a role in the disease and that blood tests that evaluate those proteins could be developed to diagnose it.
Lipkin’s lab, meanwhile, has reported that some people with the disease have abnormal levels of certain gut bacteria, another way that could help diagnose the disease. That discovery resulted from 2 years of collecting fecal, oral, and blood samples from people with the disease.
Such research has already led to possible ways to treat the disease. Lipkin says some people have been helped by probiotics, useful microbes that come in supplements and are found in foods like yogurt. It’s much too early to tell if probiotics will be effective. Meanwhile, a small number of Montoya’s patients have responded to drugs designed to treat inflammation. Expensive drug trials would be needed to test any potential treatment. Those are likely years away.
A Hopeful Yet Uncertain Future
Experts agree that the funding from the NIH means real progress toward finding causes and, eventually, a cure. But that money won’t be enough.
Private philanthropic groups like the Hutchins Family Foundation, as well as the Microbe Discovery Project, a crowdfunding effort led by an ME/CFS patient named Vanessa Li, are adding to research dollars.
Although Li’s effort raised $220,000, she did not live to see the results. She took her own life in 2015.
“If there’s another patient out there like Vanessa Li, please don’t become despondent,” says Lipkin. “We’re working as fast as we can.”