What is chronic fatigue syndrome? How widespread is it?
Researchers at Stanford University and UC Irvine appear close to giving people with chronic fatigue syndrome something they have wanted for decades: a biological test that diagnoses their disease, according to a research paper published Monday in the Proceedings of the National Academy of Sciences.
Those who suffer from the illness have long faced skepticism not only from friends and family but even from the medical community because there is no diagnostic test that can flag the illness formally known as myalgic encephalomyelitis/chronic fatigue syndrome.
Typically when individuals with chronic fatigue syndrome seek help from a doctor, they undergo a series of tests that check blood counts, immune cell counts and organ function counts. The diagnosis of chronic fatigue syndrome comes because everything else has been ruled out.
Now, scientists at the University of California, Irvine, and Stanford University say they have found a way to diagnose it: They took blood from patients, suspended a few blood cells in each patient’s own plasma, and then put those samples under stress. As they did so, they measured the electrical response of each patient’s blood cells, suspended in plasma. And, by studying electrical wave patterns from the cells, they were able to correctly differentiate patients who had chronic fatigue syndrome from those who were healthy.
Ron Davis, a professor of biochemistry and of genetics at Stanford, worked on the research. He said: “We don’t know exactly why the cells and plasma are acting this way, or even what they’re doing. But there is scientific evidence that this disease is not a fabrication of a patient’s mind. We clearly see a difference in the way healthy and chronic fatigue syndrome immune cells process stress.”
The Stanford-UCI research was funded by the Open Medicine Foundation, a group founded by Linda Tannenbaum in 2012, six years after she learned her teenage daughter had chronic fatigue syndrome. Tannenbaum, a clinical lab scientist, aggressively pursued a diagnosis for her daughter, taking her to 20 doctors over a five-month period before finally hearing the words “chronic fatigue syndrome.”
“It took forever to get diagnosed,” she said. “That’s why I knew we had to get a diagnostic (tool). I found out there was not enough research being done to even look for a diagnostic or look for a treatment. I decided I needed to start a foundation to start raising money for this research and bring researchers together. Researchers weren’t talking to each other or working together.“
Told about the Stanford-UCI discovery, Elk Grove resident Marilyn Yu said it was awesome news. A marathon runner and teacher, Yu was diagnosed with chronic fatigue syndrome in 2014.
Yu said that after she learned she had the illness, she had to go see a gastrointestinal specialist for some problems she was experiencing. Her ME/CFS specialist advised her that the disease could be a factor, she said, but when she brought it up with the specialist, he dismissed the idea.
“If we had something like this as proof, a doctor could not deny the patient,” Yu said. “He can’t write them off and say, ‘It’s all psychological.’ I think that what makes it psychological is the inability to be able to do something, the inability to be the person we used to be. That becomes the psychological part of it.”
Overall, though, Yu said she feels very fortunate to have had a primary-care doctor who diagnosed her within three months of the onset of her symptoms: “After going to work, I would have to lay in bed for a while before I could get back up. Sometimes, I wouldn’t even be able to turn over until I laid there for like 15 or 20 minutes. Holding my hair drier was difficult. After showering, I would have to lay down before I could really get ready for work.”
A regular at church, Yu said found herself unable to get out of the bed on Sundays. She had to choose between church or work, she said, and she even has had to go part time at work.
At times, when she’s speaking at public events to promote awareness of her illness, she wonders about how people are perceiving her words. Her illness has no physical outward sign, she said, but what people don’t know is that she has carefully calculated the physical toll her efforts will take and adjusted her activity to try to prevent crashing later.
She makes these choices all the time when considering how much she can do with or for her three children, her students, her husband or her family, she said, and she feels guilty when she has to say no.
“It’s constantly on my mind, and I don’t know how it’s going to impact me.” she said. “Sometimes, I’m OK. I’m good enough, and sometimes I could be in bed all weekend and I feel horrible with aches and pains and just so unbelievably tired. I have a feeling of constant unrest because that’s the feeling you get when you have ME/CFS. “
The pilot study from Stanford and UCI looked at only 20 healthy patients and 20 patients, but Tannenbaum said her organization is raising funds to help expand the number of participants and take on other aspects of research to bring this diagnostic tool to doctor’s offices everywhere.
“To get into a doctor’s office, they will first have to have enough patients tested against healthy controls to determine statistically that the test is positive on patients who have ME/CFS and negative on patients who do not have ME/CFS,” she said. “That’s really a large numbers game. They have to make a lot of these devices and test it against a lot of patients and see if there’s a difference between patients who are severe, moderate or mild with this disease and see if there’s any type of gradation as far severity. They have a lot of information to gather still.”
Rahim Esfandyarpour, an assistant professor at UC Irvine and the lead author of the research paper released Monday, said his team has a number of other questions to answer: Does this test identify only patients with chronic fatigue syndrome, or is it possible that other complex chronic illnesses could be showing up? Can the test be used to find drugs that can successfully treat chronic fatigue syndrome?
In fact, Davis, Esfandyarpour and others on their team already have begun to explore whether drugs being used to treat other illnesses might just help blood cells from ME/CFS patients produce a healthy electronic wave pattern, and they’ve found one drug candidate that showed promise.
These drugs, however, must be tested on people who have the illness to confirm that they work and to secure regulatory approval for use on on patients with chronic fatigue syndrome. These questions remain for Davis, Esfandyarpour and Stanford’s Mohsen Nemat-Gorgani, Julie Wilhelmy and Alex Kashi.
How long will it be before a diagnostic tool is available and potential drugs are identified? Part of that depends on whether this diagnostic technology proves successful with a larger group. But financing is an equally large factor, Esfandyarpour said, because it will take additional funds to complete further research.
About chronic fatigue syndrome
The Solve ME/CFS Initiative has been working since 1987 to ensure the disease is understood, diagnosable and treatable. You can sign up at https://solvecfs.org/you-m-e-registry/ to share your medical information with researchers.
Editor’s note: Because of incorrect information provided to The Bee, this article incorrectly identified a researcher on this project. The article was updated May 2 to provide the correct name, Mohsen Nemat-Gorgani.