Or, A Most Merry Tale of Encephalomyelitis, by Joe Landson
Dr. Stephen Straus was surely dead. Lo, he had been dead these nine-and-one-half years, but that made no difference to Ebenezer Scrooge, MD, PhD, as he locked up the Office of Fatigue and Lassitude, or OFAL as it was known, for the night.
OFAL handled what had been known as neurasthenia, myalgic encephalomyelitis, chronic fatigue syndrome, ME/CFS, systemic exertion intolerance disease, or whatever new epithet it now went by. Scrooge had been managing the office — and handling the ornery patient population — since Dr. Straus had retired in 2006. Dr. Straus died of brain cancer in 2007, but the problem of ME/CFS remained unsolved, and dumped on Scrooge.
The problem of the illness was one of classification, he ruminated as he shrugged into his long gray coat for the short walk to his beige sedan. These patients seemed to have nothing in common beyond their vague, ill-defined symptoms. Dr. Straus had never found a common thread; so, of course, there couldn’t be one. What to make of this heterogeneous patient community? One solution was to group them into smaller categories based on symptoms, rather than look for data that might answer the question. So Scrooge had been crafting a system for dividing them into zones of heterogeneity.
His rumination was interrupted by a distraught middle-aged woman in a long red coat, of the cut and style fashionable about a decade prior. Kleenex tumbled out of her scuffed, capacious purse as she shuffled uncertainly towards him in the wide, empty hallway of NINI, the National Institute of Neutrophilic Inquiry.
“Dr. Scrooge? I’m Laura Tompkins. They say you can help us with ME/CFS. You’re the expert. I don’t care about myself, it’s my son Timothy. They’re threatening to kick him out of school, and blame me for his being sick…”
“How did you get in here?”
“Oh, I just told them I was an ME denier. They let me in, and invited me to give a speech.”
“Well, in any case, you shouldn’t be here.”
“Now that I am, can you tell me what you’re doing about ME/CFS?”
A tense pause. “I’m dividing it into zones.”
“What are you actually doing for patients?” Laura Tompkins demanded. “For housebound adults, and children like my son Timothy?”
“Madam, I’m a researcher. If your son needs help, are there not psychologists? Is there no Graded Exercise available?”
“None of that helps! Why don’t you DO something? Why can’t you have an actual treatment trial? Why did you give the disease an awful name?” Laura asked.
Scrooge shook his head. “OFAL is an acronym; everyone in Washington has one!” he snapped.
“No, no, I mean AWFUL!” Ms. Tompkins cried in frustration.
“There seems to be an echo,” Scrooge grumbled. He was losing patience with these patients. And Ms. Tompkins had lost patience with him. She watched him go, shaking her head in disbelief.
Scrooge turned out of the NIH parking garage and drove home towards his Michael Bolton album collection. Traffic was light. It was a bitterly cold late December evening, but strangely dry and bare through Bethesda and the I-270 corridor.
After a tasteless microwave meal, Scrooge pulled his chair up to his home computer. He wanted to check the citation and view counts for his latest paper, on building a framework towards creating zones for ME/CFS classification.
Scrooge froze. Looking at his computer screen, Dr. Scrooge saw Dr. Stephen Straus’ face floating before his eyes.
He checked the cable. He checked the switch. The computer was not on. He always turned it off when he left for the office in the morning, always turned it on after dinner to check the citation counts.
Scrooge shook his head clear. He must be seeing things. He turned the computer on, and did a virus scan before he settled into tabulating.
That’s when the printer started up.
The yield was small at first, but soon there were reams — reams of paper quoting Straus, every time he had thrown shade at ME/CFS, or expressed disdain for patients. Remarks based on slipshod studies. Remarks about psychiatric symptoms. Remarks about patients needing help to drive their BMWs. (Laura Tompkins had never been in a BMW; and at the rate he was going, Tiny Tim Tompkins would never drive anything.)
As he tried to stem the tide of printing, Scrooge froze again. There was Straus, seated in Scrooge’s worn, puke-green recliner.
“Good evening, Ebenezer,” Straus intoned.
“Wha— What is…”
“This is the paper trail I authored in life, Ebenezer,” Straus answered Scrooge’s unfinished question. “Is it strange to you?”
“N— No.” He had been peddling these same half-truths and equivocations for years. Nothing had really changed.
“I was a respected scientist; I did real work. But my lot now is to wander amongst the lost souls of those I disparaged. They’ve shown me the true effect my words had on them.”
Scrooge said nothing. Perhaps that microwave meal was past its expiration date and he had indigestion, he thought.
“It’s not too late for you, Scrooge. Will you make an effort to help these people? Or will you continue to disparage them as I did?”
“But how can I help?”
“Are there not psychologists? Is there not graded exercise?” Straus taunted Scrooge with his own words.
“It’s not like they’re dying, or anything!”
“True. These patients are not dying in droves. Rather, many experience a living death.”
“That’s nonsensical. How can they be dead and alive at the same time?”
“Yet I am dead these nine and one half years,” Straus said soberly. “And still I live, dominating the ME/CFS research agenda at NIH. What’s that, if not a living death?”
“Point taken,” Scrooge muttered. He had never moved outside of Straus’ shadow, and knew he likely never would.
And so Straus sent Scrooge on a journey with three spirits: The Ghost of ME Past; The Ghost of ME Present; and The Ghost of ME Future.
The Ghost of ME Past showed Scrooge the early years in the AIDS crisis, when NIH suspended double-blind trials to find something, anything, that stemmed the tide of death. Scrooge was young and eager then. He remembered it was so exciting, actually helping patients, instead of insulting them and dividing them into zones! But the Ghost also showed Scrooge how ME patients languished as years went by with no treatments. Researchers became interested and then turned to other places, where the money was. And Scrooge’s old friend Straus pronounced his conclusion that ME patients just needed to buck up, stop whining, and think themselves to health.
The Ghost of ME Present showed Scrooge the NIH’s Microbiome Project; the All of Us Project (the Precision Medicine Initiative), and the recently-announced program to study molecular changes during exercise. Any one of these endeavors could include ME/CFS patients, but none did. The Ghost took Scrooge to offices around the country, to scientists with good ideas, who just needed funding to test hypotheses and gather data. Scrooge also saw his colleagues cheering behind his back, laughing raucously: “Three cheers for Scrooge’s Heterogeneous Zones!”
Worst of all was the Ghost of ME Future, showing psychiatrists, the school system, and child protective services ganging up on Laura Tompkins, ‘proving’ that she was harming Tiny Tim Tompkins with a bad home environment, and taking him away. Tiny Tim ended up institutionalized, where he never improved, but merely existed. The fight forced Laura into a crushing relapse of her own. Most of all she was despondent, feeling she had failed as a parent.
Finally, Scrooge’s own funeral, sparsely attended.
Scrooge awoke. It was Christmas Day. Lest he be tempted into thinking it was all a dream (or a virus), his living room floor was still carpeted with printouts.
He wrote Ms. Tompkins, wishing her a Merry Christmas. He wrote her school district, offering to come and speak to officials about ME/CFS. Soon, Scrooge became like a second father to Tiny Tim, and served as an expert witness in defense against Münchausen Syndrome by proxy charges.
Most of all, Scrooge visited his colleagues at NIH, showing them how interesting a problem ME/CFS was. He worked tirelessly to reverse the stereotypes of ME patients as whining, middle class women. He helped write funding announcements, review ever increasing numbers of grant proposals, and promote collaborations and cutting edge technologies. And when, years later, Scrooge passed away, he was hailed as a hero by the patients who had despaired of ever securing his help.
From Charles Dickens’ original story:
Some people laughed to see the alteration in him, but he let them laugh, and little heeded them; for he was wise enough to know that nothing ever happened on this globe, for good, at which some people did not have their fill of laughter in the outset…