Chronic fatigue patients are bravely offering their illnesses to science
Eight years ago, Michelle (who asked to be identified by only her middle name for privacy reasons) had a very active life. The 51-year-old was raising a combined family of nine children alongside her husband. She worked two part-time catering jobs and was deeply involved in her church community in Wyoming.
One day at work, she began feeling faint. Suddenly, she was so weak she couldn’t hold herself upright. A colleague called her husband, who had to carry her to urgent care.
Thus began her fight with myalgic encephalomyelitis chronic fatigue syndrome (ME/ CFS), a mysterious long-term illness that often follows viral or bacterial infections, similar to long COIVD. Her experience shows how difficult it is to live with the debilitating condition, which, although it affects 3 million Americans, has largely been ignored. It also underscores the remarkable courage of those trying to overcome it.
Last week, I wrote about a landmark National Institutes of Health study that, for the first time, pinpointed key physiological differences in patients with ME/CFS. Michelle, despite her health difficulties, bravely volunteered to participate in the research.
Initially, doctors could not explain her symptoms. She was told she had an ear infection, which she knew was not the right diagnosis. Soon after, she began throwing up blood. Blood tests revealed severe liver inflammation, and an ultrasound of her abdomen found enlargement of her liver and spleen.
Over the next several months, her liver tests normalized, but her daily function did not. Just listening to the TV or radio would cause immediate headaches. She would become exhausted from sitting up to read.
The worst part was not being able to interact with others. As an extrovert who was very close with her large extended family, Michelle fought back tears as she told me how she was so fatigued she could barely speak with them. “They were all concerned, and yet they knew if they called that it would compound the problem,” she said.
Michelle tried several experimental treatments, which involved traveling from her home in Wyoming to Utah for weeks at a time. As hard as it was, she was told she had to get herself up and moving. One of her daughters put up a chalkboard where she wrote down everything she had to do that day, from brushing her teeth to putting on clothes to trying to walk at least 1,000 steps.
About a year and half after her illness started, she realized she could hear the birds outside her window.
“I know that sounds so silly, but I had been so compromised I couldn’t even hear the birds sing,” she explained.
She was able to start speaking with her family on the phone again. On some days, she could run basic errands such as going to the grocery store.
Participating in the NIH study was a daunting challenge. It required traveling across the country and days of tests that carried significant risks. Specifically, there were numerous tests in which she had to exert herself to the point of exhaustion.
Researchers told her that, on any given task, she might stress her body in a way that could undo all her progress. “They would remind me each day that this could be the last exercise you’re able to do,” she said. They’d regularly ask her if she was sure she wanted to continue. They also explained that, unlike many clinical trials, this one didn’t offer treatment. Participation was not going to make her better.
Still, Michelle persisted. “Because I am civic-minded, I truly do believe that the individual is not more important than society,” she said. “I felt like it was worth everything” to build the study’s database, which is now available to all scientists worldwide.
She is glad to see the results published and hopes it will lead researchers to find treatments to her disease. In the meantime, she urges much more attention to ME/CFS, which costs the United States as much as $51 billion a year in medical care and lost earnings. Yet NIH is spending only $13 million to study the disease, a fraction of the amount allocated to studying other comparable illnesses, including long COVID.
NIH’s groundbreaking study offers insights into long COVID, which researchers believe to be closely related to or even a subcategory of ME/CFS. If that leads to much-needed treatments for these conditions, we can thank those such as Michelle who selflessly participated in the research.