Lebanon — Beginning at age 7, Katie Hart often felt sick. Her symptoms included a sore throat and flu-like symptoms, aches and pains, digestive problems and severe fatigue, which at times made it impossible to function.
“I spent most of my days in school in the sick room,” said Hart, who is 51, grew up in Portland, Ore., and now lives in Montpelier.
Doctors had trouble pinning down the source of Hart’s symptoms, so she spent years not knowing what the problem was. In her early 20s, Hart was diagnosed with chronic fatigue syndrome, but found it “was more of a burden than it was an opening of doors to better treatment,” she said in a phone interview.
Headlines at the time described the condition as the “yuppie flu” and implied that it was a form of hypochondria. As a result of the common misperception, Hart said she worked to hide her diagnosis.
In recent years, however, sufferers like Hart — of which the Centers for Disease Control and Prevention estimates there are 836,000 to 2.5 million in the U.S. — have begun to come out of the shadows to seek increased understanding, research and improved treatment of the debilitating and poorly understood disease, which is now known as myalgic encephalomyelitis/chronic fatigue syndrome, or M.E. for short.
Last year, the National Institutes of Health awarded grants totaling more than $7 million to develop a coordinated research effort into myalgic encephalomyelitis/chronic fatigue syndrome. That more than doubled the NIH’s spending on the disease between 2016 and 2017, and included funding for four ME/CFS research hubs across the U.S. that will receive a total of $36 million over the next five years.
Also last year, a Sundance award-winning documentary, Unrest, made by a woman who has struggled with the disease and includes her interviews over Skype with other sufferers, came out and it has given advocates and patients a tool.
“It’s changing the landscape for us,” said Rivka Solomon, a western Massachusetts M.E. patient, who is also an events organizer for Massachusetts ME/CFS & FM Association.
The association and the Geisel School of Medicine at Dartmouth are hosting a screening and panel discussion of Unrest at Dartmouth-Hitchcock Medical Center on Tuesday.
The film, which is also available streaming online, is bringing attention to the disease and the experience of people like Solomon, she said.
Solomon, now 55, has struggled with M.E. since the age of 21. For her, the disease began with a bout of mononucleosis.
“I became so weak that I was barely able to stand up and brush my teeth,” she said in a phone interview.
After about a year, the disease went into remission for seven years. During that time, though still exhausted and requiring assistance to get to class and carry her books, she was able to finish graduate school before she was leveled again by a cold, which turned into bronchitis and then walking pneumonia. She was again bedridden and unable to function.
In addition to the fatigue, Solomon said she was also plagued by mental cloudiness that made it difficult for her to remember people’s names and even her own phone number.
Since that crash, Solomon’s symptoms have been intermittent. Some days she can walk, some days she needs assistance to get from her bed to the bathroom. Even on her good days, however, walking for pleasure is out of the question.
Like Laura Hillenbrand, the author of the New York Times best-seller Seabiscuit, who wrote about her experience with M.E. in a 2003 essay in The New Yorker, Solomon turned to writing in the midst of her illness. Instead of conducting a book tour to market That Takes Ovaries! , a collection of stories of women demonstrating remarkable courage, Solomon — from her bed — encouraged women to gather to share their own stories of courage.
Depending on how she feels on Tuesday, Solomon plans to attend the DHMC screening and discussion. Someone else will have to drive her, and she will bring her wheelchair.
“I’m fighting for my life here,” she said. “We have to raise awareness about what this disease is. We have to educate doctors and researchers.”
At least two Upper Valley clinicians seeking to improve the medical community’s understanding of M.E. will be in attendance on Tuesday: Dr. Roshini Pinto-Powell, a D-H internist and associate dean of students at Geisel, and Dr. Robyn Jacobs, an obstetrician-gynecologist, who operates a private practice in Lebanon.
Both doctors have encountered patients with M.E. through their practices, and both agree with patients and advocates that the name “chronic fatigue syndrome” fails to capture the life-changing nature of the disease.
Pinto-Powell saw her first and most dramatic case in 2014. A D-H physician came to see Pinto-Powell’s physician assistant with what appeared to be a run-of-the-mill virus. Though the acute symptoms — a sore throat and fever — did subside, the patient “just never felt better,” Pinto-Powell said.
Things like competitive dancing, which had been a part of the patient’s life, began to take “tremendous effort,” Pinto-Powell said. He developed other symptoms including a racing heart, diminished spatial awareness and muscle pain, she said.
As Pinto-Powell added these things up, it became clear that the patient had M.E., which she described as a “sinister diagnosis.”
As a result, the D-H physician had to leave his career, and he relocated to what he hoped would be a better climate on the West Coast. It’s affected his relationships and forced him to give up dance, Pinto-Powell said.
Though he’s tried different things, there’s “no sign he’s getting better at all,” Pinto-Powell said. “It’s really pretty crushing.”
The experience motivated her to learn more about the disease and to teach D-H residents what she was learning. Unfortunately, the information and treatments available are limited.
The former D-H physician regularly returns to the Upper Valley to see Pinto-Powell, and she does her best to help him through what she described as “supportive care.”
That includes helping patients strike a balance between leading as active a life as they can and avoiding harmful overexertion. It also includes ensuring that patients’ mental health is supported, because though the condition is not psychological in origin, the physical effects and lifestyle changes it requires can be depressing. She encourages her patient to keep his mind active by reading, writing and visiting the library.
Not all M.E. patients have found sympathetic doctors like Pinto-Powell. Unable to find a cause of an M.E. patient’s symptoms, many doctors have told patients that they were suffering from a psychological disorder.
For about a decade, Hart struggled with a misdiagnosis of bipolar disorder, which came with medication that didn’t help and carried its own side effects.
“I wanted them to be right,” she said.
If she had bipolar disorder, then it could be treated through medication, mindfulness techniques and cognitive behavioral therapy.
“Then I would be better,” she said. “However, that didn’t happen.”
Eventually, in 2007, while she and her family were living in England, she received a more accurate diagnosis of M.E. But the correct diagnosis still didn’t pave the way to a cure. Instead, doctors recommended exercise therapy, which made her sicker because patients with M.E. tend to crash following exertion.
Through her own experience and that of other patients who share her diagnosis, Hart has come to understand that the best way she has to manage the disease is to pace herself. Despite these efforts, some cognitive symptoms, also described as “brain fog,” have worsened in recent years.
Now on her best days, Hart, who is married and has three young-adult daughters, can make a meal for her family and use a wheelchair to take an outing. But on a bad day, she needs assistance to get from her bed to the bathroom.
Like Solomon, Hart has found Unrest to be galvanizing. Hart attended a screening in Arlington, Mass., earlier this year. Through that event, she met Solomon and other advocates. She also enrolled in a research study at the Athinoula A. Martinos Center for Biomedical Imaging at Massachusetts General Hospital that is seeking to find differences in M.E. patients before and after physical exertion.
“I’m quite excited about the possibility of having more information,” she said. “At this point, I feel like that’s really all I can hope for.”
Researchers are searching for the cause or causes of M.E. in a variety of ways including through proteomics, or the study of proteins in cells; metabolomics, the study of small molecules within cells; and genomics, which includes DNA mapping.
In the Upper Valley, Paul Guyre and a team of researchers in a lab in the Borwell research building at DHMC are examining blood samples in search of a difference in immune response to infections in people with myalgic encephalomyelitis. Though the project is not yet NIH-funded, Guyre, an active emeritus professor of microbiology and immunology at Geisel, has applied for funding.
There is currently no blood test to detect the disease, leaving doctors to piece a diagnosis together based on clinical observations, patient histories and tests that rule out other things.
“We’re hoping to find something unique with these patients,” Guyre, who knew little about M.E. before a relative developed the disease in 2014, said as he looked over some recent data with lab manager Jane Collins in their lab last week.
Such a difference that could be measured in blood samples could help clinicians to diagnose patients more quickly and measure the effectiveness of treatment.
“I’m very hopeful,” Guyre said.
Tuesday’s screening and panel discussion will take place in DHMC’s Auditorium E. Doors open at 3:30 p.m. for light refreshments. The program begins at 4 p.m. Registration is at dartgo.org/UNREST-MECFS. For more information, contact jane.collins@dartmouth.edu or paul.guyre@dartmouth.edu.
Valley News Staff Writer Nora Doyle-Burr can be reached at ndoyleburr@vnews.com or 603-727-3213.