A Myalgic Carol

Or, A Most Merry Tale of Encephalomyelitis, by Joe Landson

59Dr. 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…

The End

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20 Responses to A Myalgic Carol

  1. ME says:

    Way too long to read or comprehend and a waste
    of energy trying to figure out the point please
    have mercy

    • Jennie Spotila says:

      The point was simply a satire of NIH’s refusal to invest in ME sufficiently. No worries if you are not able to read it!

      • Diane says:

        A well thought out sateric story that probably was not written in one setting, reviewed & revised over several days before the cognitive analogies were clearly cognizant. It is with great respect that I will read this a few lines at a time, or have someone read it to me, I can only guess at the amazing talents both Joe and Jennifer should have been allowed to excell professionally, unfortunately so many of us were denied our civil liberties and freedom to contribute to our Community’s. And Dr. Steven Strouse Is so spot on with his vision of the future of the families of our hope of tomorrow by keeping seriously ill youth oppressed so they can not experience Wellness or all the “Rights of Passages” that lead to great leaders willing to care enough to keep their commitments & their Professional Integrity to serve the ill and hopeless people within their power.

  2. Jenifer Caldwell says:

    Love the originality in this writing, Jennie…our very own Christmas Story. Thanks for all you do to advocate for all of us.

    I am a single mom of a wonderful 10 year old daughter. Developing ME two years ago has created nothing but struggle after struggle in our lives. At the end of the day, we are just grateful to have each other; but, boy, our lives are crazy hard right now!

    Also, since this post speaks of the NIH’s horrendous lack of funding for ME/CFS, I wanted to let you know that I will be going up to the NIH next month to enroll in the Intramural ME/CFS data collection study. I fall into their “post-infectious” eligibility category having had ME for 2 years and 4 months with a clear and well documented infectious trigger. My sincere hope is that the information they are able to collect on me will be useful in sorting out this wicked disease we find ourselves stricken with.

    Take care,

    • Jennie Spotila says:

      Hi Jennifer,

      First of all, THANK YOU for participating in the NIH study!!!!! My hope is that the selected patients will be true ME patients, and certainly this deep dive study is long overdue.

      Joe Landson gets the credit for this creative post. He floated the idea on Facebook and took me up on the offer of a guest post. Joe did a great job.

      Hang in there, Jennifer. I know it’s really hard. But hang in there.


      • Jennifer says:

        Once all of the specialized testing is done at the NIH, this should confirm my diagnosis of ME (by Charles Lapp, Charlotte, NC). If it is determined that I don’t have ME, I would not continue in the study. As mentioned in my original comment, I have worked in clinical research for many years and I know how this process is supposed to work. I will be advocating and questioning things while I’m there! (ha…they might regret enrolling me…kidding)


  3. Waiting says:

    Perfect, just perfect! Such a creative way to describe our grim reality.

    I imagine it might live on the way the original has — watched the original myself this Christmas. Let’s hope it becomes a tale describing only the way things WERE really soon.

    Well done, Joe.

  4. Laurel says:

    Well done, Jennie! So imaginative, and sadly, so true.
    Let’s hope that 2017 is a banner year for research and that we finally get some help.

  5. Carollynn says:

    Thank you, Joe. I don’t have enough of a brain today for a wittier remark, but I’m working on it.

  6. Chris Heppner says:

    This is great! Congratulations to both of you, for writing and encouraging this creation. Maybe fiction is the best way to combat fictitious pseudo science. A lovely piece. Hope the target gets to read it.

  7. billie moore says:

    Brilliant!!! Laser-target accurate! But heart breaking because it is so true.
    Thank you, Joe.

    Do you think that anyone in the CDC, NIH, or FDA will see themselves as Scrooge, much less Strauss’ ghost? Not one will.

    • Joe Landson says:

      You’re right. They actually see themselves as *protecting science*. (!) I’m sure there were some who insisted on placebo-controlled trials while AIDS patients dropped dead at their feet. Thank G-d they lost.

  8. Cindy Downey says:

    Hi Jennie,

    Thanks very much for posting “A Myalgic Carol”! I think it should be brought out every Christmas season, as a reminder; even if the situation vastly improves for PWME. Thank you very, very much to Joe Landson for writing this story!!!

    Has everyone seen Craig Maupin’s website re Stephen Straus’ letter to Keiji Fukuda, about the 1994 CDC, Fukuda CFS case definition?

    A couple quotes from Straus’ letter: ” I predict that fatigue itself will remain the subject of considerable interest but the notion of a discrete form of fatiguing illness will evaporate… What I would most like to see is that fatigue is not abandoned as a subject for careful consideration because of further failures of CFS case definitions of frustrations arising out of shrill pressures to justify an entity of dubious validity such as CFIDS…In any case, I commend you again on your efforts to forge an international consensus that has scientific merit and is politically acceptable.”

    Here is the link to this Craig Maupin’s website:

    For me, the comment about a “politically acceptable” case definition speaks to the bureaucratic concern to please the politicians and the government of the day. What machinations went on behind the scenes to orchestrate a “politically acceptable”
    case definition. And why the political concern? Money of course. Why would a case definition need to be “politically acceptable”? I’m speaking tongue in cheek here when I ask, do all case definitions for all diseases have to be not only evidence based, but meet a politically acceptable standard? Or just the case definition for ME?

    Well…maybe ALL case definitions actually DO have to be passed by some political approval body….??? As in, if we acknowledge this as a real, and very serious disease, how much is it going to cost the government? How much money do we have to divert from assisting industries, to helping the citizens with this disease? And how much financial damage is it going to cause vested interests if we affirm this disease, as real? Who are we going to annoy if we say this disease is real?

    Unfortunately, in the case of ME, when we have scientists who are also bureaucrats, we have seen which half wins out.

    On another topic, some comments on today’s blog have been raised about the difficulty of reading longer articles. And, that is one of the very real problems with educating PWME about this disease, and ALL its aspects: scientific, political etc. There are so many barriers to action, including illness, and financial need. Many do not have computers, iPads etc.

    Most with computers cannot tolerate more than a few minutes sitting upright reading articles, blogs etc., due to orthostatic intolerance. I know… after a few minutes upright, I get lightheaded, uncoordinated, nauseated, and my heart races. This kept me from finding out more about the backroom biopolitical shenanigans for over 2 decades. All I concentrated on were a few minutes of reading good news articles about discoveries. I mistakenly believed that governments were sincerely working on ME. What nonsense! Then a chance reading of Carol Schmid’s article “The ME/CFS Stigma” opened my eyes. And, with more searching, I now know where to find info on the history and politics of ME. But, I suspect many do not.

    I think other media vehicles can help, such as DVDs: “Forgotten Plague M.E. and the Future of Medicine” is one such documentary that does an excellent job. Some libraries have copies of this film, or can order it on request. I understand people can get copies of this film from The Blue Ribbon Foundation, or Amazon. Millions Missing has captured media interest. And Jen Brea’s “Unrest” should create more much needed awareness. Awareness in the ME community is clearly building, but it would be great to have a solution for those who can’t read much at a time, can’t afford a computer etc. Maybe a website devoted to point form articles only, would be a partial solution for those with a computer or iPad etc.

    Anyone have any other ideas?

    Thanks again, Jennie and Joe for this super story!

  9. Sabrina Brown says:

    I loved reading this!!!! Jennie and Joe thank you so much for writing and publishing this great satire — I’ve been ill for 15.5 years and humor is the only thing that gets me through, (ok, compassion is up there, too — but humor is what makes me feel alive). You guys are terrific!!!!

  10. Laurie P says:

    Joe writes:

    “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?”

    This is great, Joe! Genius!!! Thank you for writing it and sharing it with us. “A Christmas Carol” is one of my favorite stories from my childhood. I never thought that I’d be living it like this though; especially not the Joe Landson, Special Edition, “A Myalgic Carol”. Your whole story is intelligent and funny and wonderful to have in the insanity we are caught in.

    I also love the film version, “Scrooge”, with Albert Finney. One of my favorite scenes from any film has been the scene at the beginning of this film where Scrooge has just let Bob Cratchit out of work on Christmas Eve; but not a minute before his shift is up, and Bob Cratchit rushes to meet two of his children waiting for him in the freezing cold in front of a toy store window. The children are peering through the glass at all of the toys. Bob Cratchit asks his daughter, Kathy, which toy she likes the best. She responds, “I like that dolly in the corner.” Tiny Tim bursts out, “I like all of them.” Bob Cratchit laughs and says “Good boy! And why not one in particular?” Tiny Tim further responds, “Well, you said I can’t have none of ’em, so I might as well like ’em all.” Bob Cratchit says, “Tim, you are a philosopher and a gentleman.”

    Having been ill since 1983 and bedridden now for several years, I know exactly how it feels looking through a glass window at the life on the other side that I can’t have and wanting ALL of it! It’s time to end the idiocy, cruelty and bureaucracy of their living death policy that keeps us trapped without meaningful research funding, without treatments, without an educated medical establishment and society, and without care, in this very painful, living death disease. It’s time for all of us to have all of our lives back. We deserve the lives we’ve worked for, were working towards and a chance at the lives we dream about. They can do this for us. It is their jobs to do this for us and learn things about the human body that will help people with other conditions too, for all the generations that follow. This is what medicine is supposed to be about; not broken promises, broken medical oaths and bah humbug, if it pertains to ME.

  11. jimells says:

    Thank you for this. I used to read novels, but now when I want to read fiction, I just re-read Dr Francis “Lucy” Collins statements that NIH wants to help us.

  12. Asa says:

    Bravo. 🙂 Enjoyed. Thank you, Joe, for writing. Thank you, Joe and Jennie, for sharing. Peace, goodwill toward ME.

  13. Anne O says:

    Joe, this is so brilliant I can’t even really express it! First, a great piece of writing. And then, so on-target and FUNNY! You’re a genius.

    I read it a number of days ago and I’m still laughing. 🙂 You just nailed it.

    This is my second most favourite part:

    “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.”

    🙂 : -) 🙂

    And here’s my favourite:

    “Now that I am, can you tell me what you’re doing about ME/CFS?”

    A tense pause. “I’m dividing it into zones.”

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