Living with Chronic Fatigue: Dina's Story
If you read nothing else in this story, at least take note of this:
Dina suffered from ME/CFS (colloquially known as chronic fatigue syndrome, or CFS)—a debilitating chronic illness—for eight years before she received an official diagnosis. Eight years. She went to several doctors who attributed her conditions and suffering to anxiety and burnout from work. The CDC estimates that 90 percent of people with ME/CFS have not been diagnosed, and most medical schools in the United States do not have ME/CFS as part of their physician training.
Dina was eventually tipped off from an article in the news she read, which eventually led her to one of the handful of specialists in the U.S. on ME/CFS.
That is why I am telling her story.
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The History
In the summer of 2010, Dina had just finished her second year at Harvard Law School. She was working full-time in Manhattan at Sullivan & Cromwell, a corporate law firm that consistently ranks among the top five in the country, and noticed herself getting headaches and feeling exhausted all the time. “I would need lots of rest after work and not feel like going out and didn’t understand why,” she says. “I didn’t feel that I could go out on the weekend—even just casually, not crazy partying—and recover in time for Monday.”
She got sick a lot during her third and final year of law school. Her brain processing capacity started to go, and she would need to re-read things several times. She compares it to a phone battery that’s at zero percent and can’t keep going, or trying to start a car engine that won’t start.
She saw several doctors and got no answers or relief for her symptoms. It was attributed to burnout and anxiety or depression, and Dina charged on.
Despite the symptoms, Dina excelled in law school and passed the bar exams for New York and Massachusetts in July 2011. She received a job offer from Sullivan & Cromwell and moved to New York in the fall of 2011.
For the next seven years, Dina tried to balance living a “normal” life and constant exhaustion with varying degrees of success. During that time, she changed jobs and moved cities twice, thinking that perhaps the New York hustle or corporate law environment was the cause.
A Diagnosis, At Last
While Dina was in her second year working as an in-house lawyer for an insurance company in San Francisco, she got the idea that she might have ME/CFS. She remembered an article she had read in The New Yorker years prior about a young woman’s struggle with ME/CFS. It wasn’t the first that Dina had heard of ME/CFS, but news stories often present the most severe cases of the illness—individuals who are confined to their beds all day long, immobile and unable to eat or use the bathroom without assistance. She had assumed those cases were irrelevant to what she was experiencing.
Dina at her parents’ home in 2015, prior to being diagnosed with ME/CFS. (Photo Credit: Eduard Guzovsky)
At the same time, her own conditions were deteriorating. Although the hours at her current job were significantly better than those at the previous law firm, she suffered from constant, inexplicable fatigue. She had seen multiple doctors and psychiatrists who prescribed different medications and therapies, and nothing helped.
“I would get exhausted from a 20-minute walk from work and have to take an Uber back because I couldn’t walk,” she says. “It got to a point where the weekend wasn’t enough to recover, my brain was totally fried on Monday. I couldn’t mentally process information.”
In the summer of 2017, Dina got on a year-long waiting list at the ME/CFS Initiative, a Stanford clinic that specializes in ME/CFS. Finally, in July of 2018, she had her first appointment at the clinic and it was determined that Dina did, in fact, have ME/CFS.
In September of that year, Dina left her job in San Francisco and moved to her parents’ home just outside of Boston.
The Current State
Currently, there is no FDA-approved treatment for ME/CFS and no biomarker. One blood test is showing promising signs of being able to serve as an indicator of ME/CFS, but it is still in a pilot phase.
Biomarkers are used to identify the presence of a disease and whether or not a treatment to fight the disease is effective. For example, the presence of certain proteins, genes, or antibodies in blood are biomarkers used to diagnose different types of cancer and help determine a course of action and the most effective treatment plan.
The lack of a biomarker and any FDA-approved drug for ME/CFS means individuals struggling with the disease are on a constant wild goose chase, testing different hypotheses from a myriad of doctors. “It’s a shifting, revolving cast of characters,” Dina says. “Lots of throwing things at the wall and seeing what sticks.”
Currently, Dina sees three main doctors for ME/CFS on a regular basis, and has been referred to many others for follow-up work. She flies out to Mountain View, California twice a year to visit two different clinics, and has regular phone consults in between. She also sees a ME/CFS specialist in Massachusetts.
In addition to her primary ME/CFS doctors, Dina has seen a Lyme specialist, consulted with multiple neurosurgeons, psychiatrists, and a physical therapist, and she has upcoming appointments to see a pulmonologist and undergo a sleep test. She’s had MRIs done of her brain, C-Spine and chest, experimented with a keto diet, and been prescribed dozens of different prescription medications and supplements. Her first appointment with one specialist involved more than 50 blood tests and 15 to 20 different treatments to try over the course of several months.
“The PT thinks my chronic fatigue is a structural or mechanical neck issue, the Lyme doctor thinks it is Lyme, one CFS doctor thinks it is a viral infection and another thinks it is mast cell dysregulation,” she says.
ME/CFS often follows a severe infection—its onset has been linked to various viruses including Epstein-Barr (best known for causing mono), Ross River, and Coxiella burnetii. But there is no clear answer as to how or why any of those viruses could trigger ME/CFS. One theory suggests the virus remains in the patient’s body and that is ME/CFS; another theory stipulates that the virus triggers an overactive autoimmune response, and that response manifests into ME/CFS. Other speculations on the cause of the disease include: a breakdown of collagen in the body, a compressed brainstem, and mast cell activation syndrome.
Treatments that prove effective for some patients can have zero effect for others. One potential cause of ME/CFS being explored is craniocervical instability (CCI)—increased mobility in the area where the skull meets the spine, causing a compressed brainstem. A small number of patients have undergone occipito-cervical fusion (OCF), a complex surgical procedure that involves raising the brainstem by inserting mechanical rods and screws. The first successful case was Jeff Woods in 2018, and there have been at least eight additional success stories since. Others who have undergone the same procedure have seen no benefit, or worse, experienced surgical complications that leave them even further impaired.
One reason so little is understood about ME/CFS is that it is severely underfunded. Despite the fact that the disease affects up to an estimated 2.5 million people in the United States alone, it received only $15 million in NIH funding in FY 2019, roughly $5.60 per patient. In comparison, the West Nile Virus, which had 2,647 cases in the U.S., received $36 million in 2018 (the most recent year for which the CDC has data), equating to $13,600 per patient.
According to a report put out in 2015 by the Institute of Medicine (IOM, now the National Academy of Medicine), more than two-thirds of medical schools fail to include information about the disease in their curricula. As a result, many ME/CFS patients who seek medical care are misdiagnosed, or worse, ridiculed and dismissed, simply because doctors are unfamiliar with ME/CFS.
Final Thoughts
I was first moved to write this story when Dina mentioned to me that it was a news article that cued her into what her mysterious symptoms might be after eight years. I wanted to shed light on her case of ME/CFS—less severe than what is typically portrayed in the media, but one with very real consequences.
Dina considers herself lucky to be able to seek treatment and do the things that she is able to do. She can leave the house and visit with friends occasionally, and has dabbled with online language and psychology classes, although even small amounts of these activities often require significant recovery time.
“I’m grateful for what I have,” she says. “Objectively, it feels like I can live a really fulfilling life having this illness.”
Others, however, aren’t so fortunate. An estimated 25 percent of patients are housebound or bedridden; in the most severe cases patients struggle to breathe and experiencing sound or light causes agony.
According to the IOM report, ME/CFS leaves patients more impaired than those with type 2 diabetes, congestive heart failure, hypertension, depression, multiple sclerosis, and end-stage renal disease. Multiple doctors who have treated patients with both ME/CFS and HIV/AIDS claim that the former is more debilitating.
It feels wrong to compare one disease against another, or different cases of the same disease, and say that one deserves more funding or attention than the other. But the bottom line is that ME/CFS has such devastating effects, and it is so vastly underfunded and misunderstood, that something in me wanted to write this down.
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