Unraveling the Mystery of CF and Fibromyalgia

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It is a quite intricate, very real physical disease, and one that for years has caused ambiguity, misunderstanding and even dismissal by many medical specialists. But today, thanks to a new, multi-year funding, there is expectation for a better understanding and treatment for chronic fatigue syndrome.

In late September, the National Institutes of Health committed 7.2 million dollars in grants for fiscal year 2017, with plans to fund the work for five years. If funding remains stable, grants will total more than thirty-five million dollars.

The money comes with an objective: Find the biological origin of chronic fatigue syndrome, which is also known as myalgic encephalomyelitis, or ME. The federal agency announced the grant to fund the establishment and work of three collaborative research centers and another center that will coordinate research data.

“National Institutes of Health is serious about” the disease, says Vicky Whittemore, PhD, an expert on the disorder and leader of National Institutes of Health working group that manages the agency’s activities related to the disease.

The three research centers at Cornell University in Ithaca, Columbia University in New York City, NY, and the Jackson Laboratory, an independent nonprofit research institution in Bar Harbor, ME, will approach the disease from different viewpoints. A clinical study is also happening on the National Institutes of Health’s campus in Bethesda, MD.

“Our plan, with these three centers and the study led by Avindra Nath, MD, at National Institutes of Health, is to really comprehend the fundamental 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 objective.” Ian Lipkin, MD, heads the work at Columbia University.

“With the National Institutes of Health paying attention to this, the rest of the medical community should understand that this is something that needs to be addressed,” says Lipkin, who in recent years has struggled to recruit researchers and scientists to study the disease. “This will have an impact on medical schools and the medical community.”

That was a vital point, because less than a third of medical schools are now taking a look at chronic fatigue syndrome. Less than half of medical textbooks cover it. That was led to widespread unawareness and misunderstandings about the disease, which affects as many as 2.5 million Americans.

Raising awareness, Lipkin expects, will assist in raising additional funds for research. As inspiring as the National Institutes of Health grant is, extra money will be required.

A Poorly Named Disease

For people with the disease, mental, physical, or emotional exertion usually takes a huge toll. Something as simple as climbing the staircases, trying a crossword puzzle, or stressing over a task at work can cause crippling, long-term fatigue. Sleep does not help get rid of it. Difficulties with memory and thinking, often called brain fog, also can occur.

The CDC has recognized symptoms that most people with the illness have. Usually, they were not capable to do things they could in the past, their symptoms get worse after mental or physical tasks that they were capable to do before, and they do not feel better after a full night’s sleep. These symptoms are vital for a diagnosis, the CDC says. To be diagnosed with chronic fatigue syndrome, a patient must also either have complications with memory and thinking or must display that symptoms get worse when sitting upright or standing, or both.

A fractional list of further likely symptoms includes:

  • Headaches
  • Joint pain
  • Mood complications, including depression and irritability
  • Sore throat that does not get better
  • Swollen lymph nodes

“People do not comprehend that this is not the similar 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 chronic fatigue syndrome Initiative, a nonprofit advocacy and research 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 confusing and complex. It is not even clear that it is a solitary disease. It often comes on all of a sudden, after an illness, but it can also form slowly. For some patients, symptoms are continuous; for others, they come and go. In some people, symptoms may be activated by standing up and improved by lying down. The symptoms and how worse they are can differ a lot from patient to patient and can look like other diseases.

“It’s really tough to find one patient who is identical to another or even similar,” says Jose Montoya, MD, director of the Stanford chronic fatigue syndrome Initiative. Montoya researches the disease and works with patients who have it. “The disease has some dominant characteristics, or symptoms, but it has a lot of flavors, a lot of colors.”

Montoya’s specialty is contagious diseases. Treating and studying chronic fatigue syndrome 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 search for causes initiates the research in Montoya’s laboratory at Stanford and Lipkin’s lab at Columbia. Both have had recent successes and accomplishments.

Earlier this year, Montoya and his team published research that identified seventeen cytokines, a kind of protein associated to the immune system that may be involved with the disease. Their outcomes recommend that inflammation plays a part in the disease and that blood tests that evaluate those proteins could be developed to diagnose it.

Lipkin’s lab, in the meantime, has reported that some people with the disease have irregular levels of certain gut bacteria, another way that could help diagnose the disease. That finding resulted from two years of gathering oral, fecal, and blood samples from people with the disease.

Such research has already led to potential ways to treat the disease. Lipkin says some people have been helped by probiotics, beneficial microbes that come in supplements and are found in foods like yogurt. It is much too early to say if probiotics will be effective. For the time being, a small number of Montoya’s patients have responded to drugs intended to treat inflammation. Costly drug trials would be required to test any possible treatment. Those are likely years away.


Ian Lipkin, MD, professor of epidemiology and director, Center for Infection and Immunity, Columbia University.

Jose Montoya, MD, professor of medicine and director, Stanford ME/CFS Initiative, Stanford University.

Zaher Nahle, PhD, chief scientific officer and vice president for research, Solve ME/CFS Initiative, Los Angeles.

Vicky Whittemore, PhD, chairwoman, Trans-NIH ME/CFS Working Group, National Institutes of Health.

The Atlantic: “The Tragic Neglect of Chronic Fatigue Syndrome.”

Clinicaltrials.gov: “Myalgic Encephalomyelitis Chronic Fatigue at the National Institutes of Health.”

Institute of Medicine: “Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness.”

National Institutes of Health: “Estimates of Funding for Various Research, Condition, and Disease Categories (RCDC).”

News release, Stanford University, July 31, 2017.

News release, Columbia University, April 26, 2017.

Solve ME/CFS Initiative: “Get the Facts about ME/CFS.”

Solving the Mystery of Chronic Fatigue By Matt McMillen via WebMd

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