From ME/CFS

(Part 3 of 3)

Dear Reader, my apologies. Within the confines of my current prison, I have not yet completed the essays I promised you months ago, neither my displays of Medical Pearls collected over thirty years, nor my recent songs of Adventure through Wilderness. Those tales will yet come, God willing.

ME/CFS, like fibromyalgia, is a protean disease, vast in symptoms and ever-changing, a chronic, multi-system illness. The profound fatigue occurs strangely late, sometimes days or even a week after modest exertion, whether physical, cognitive, or emotional in nature. Then it remains.

As of 2015, the official required elements for the diagnosis of ME/CFS, include 1) Post-Exertional Malaise (PEM); 2) terrible non-refreshing sleep; 3) substantial unexplained reduction in ability to do normal activities lasting more than six months, often with profound fatigue not relieved by rest; and 4) at least one of the following two bonus problems: 4a) cognitive impairment and/or 4b) orthostatic intolerance (symptoms worsen when upright: lightheadedness, palpitations, fatigue).

Do I, TAT, meet the 2015 criteria? I’ve never been a halfway sort of person, and I’m not about to start now. I have had, over the decades, every symptom common to fibromyalgia, with the sole exception of painful menstrual periods. Reader, can you understand when I say I’m elated, almost to the point of tears, for not having that one symptom? Beyond my fibromyalgia baseline, let’s consider if the ME/CFS criteria apply to me.

First, ludicrous, non-refreshing sleep. I have had a profound sleep disorder with my fibromyalgia for decades. I tried C-PAP daily for a year, but it didn’t help. In my worst years, I could stay awake only eight hours per day. I would sometimes lie down in the middle of church hallways to rest, heedless of traffic, so severe was my exhaustion.

Nothing matters like sleep. Not food, not water. In my thirties, I often entered my home after work and collapsed on the carpet, never reaching the couch just ten steps away. Like many with fibromyalgia, I feared sleep—sometimes I still do—knowing I’d awaken to the same nightmare, feeling non-refreshed with quadrupled whole-body pain. My continuing sleep problem fits both fibromyalgia and ME/CFS.

Next, did I have, at some critical moment, a sharp reduction in my ability to do my previous “normal” activities? Yes. After my first infection with COVID in 2020, I truncated my work hours. There was never a question of whether I’d reduce my hours, only how much. A few months later, I reduced my workload again.

Church attendance worsened after COVID. The noise! The light! The people! The vibration pain of travel! (I became like the Grinch who hated the Christmas Noise, the Trees and the Tassel, the Girls and the Boys!) One hour at church wiped me out for two days. I required all Sunday—quiet, dark, and mostly supine—to recover for work on Monday.

More evidence of my reduction in physical capacity? In March 2020, I became the first physician in town to acquire COVID-19. Following the infection, I experienced eighteen months of “long-COVID” syndrome. My lung fitness plummeted from a VO2 max of 56 down to 44. It took me five months to regain enough fitness to run one mile. Before COVID, I ran half-marathons.

What about cognitive impairment? The COVID-associated brain fog struck me acutely—no different from the experience of millions of other people—but I never recognized it as the onset of a new process, ME/CFS. Rather, I marveled at how similar long-COVID felt compared with a standard crummy day of fibromyalgia. (Low-dose naltrexone, like 2 mg twice daily, helps many fibromyalgia patients; it has been found quite useful for long-COVID. Somehow, the diseases are linked.)

Orthostatic intolerance? Yes. My enduring issue of poor standing worsened distinctly with COVID. I stagger often.

So how does a family physician, a professional who studies disease all day long, not identify a new process in himself? Easy. By not asking the right questions. And by sporting a tough-it-out attitude during a global pandemic.

More importantly, how many of my patients, and my colleagues’ patients, with my variety pack of seemingly unrelated symptoms, ought to have ME/CFS added to their problem list? An estimated one to two million Americans have ME/CFS, but over ninety percent are currently undiagnosed or misdiagnosed.

The syndrome was first recognized in the 1800s. Scholarly groups gave it various names—neurasthenia (late 1800s), atypical poliomyelitis (1930-1950s), epidemic neuromyasthenia (emphasizing muscle pains), ME (myalgic encephalomyelitis), chronic Epstein-Barr virus syndrome (1970-1980s), chronic fatigue syndrome (1988), CFIDS (chronic fatigue immune dysfunction syndrome), and SEID (systemic exertion intolerance disease). Each attempt to define the disease enhanced our current understanding of ME/CFS. Unfortunately, there is still no single diagnostic test, no single proven cause, and no single treatment option for this complex disease.

Is there any utility in identifying and naming such an amorphous syndrome? For suffering patients, I believe there is. Absolutely. Correctly naming a problem, even if it’s inscrutable and incurable, gives context to sufferers and their families. The right name functions as an anchor point for healthcare providers laboring to understand and treat their patients’ symptoms. Identifying and documenting this difficult syndrome, whenever possible, is the right and loving thing to do. But if there’s no cure, what does it matter? I asked Edna St. Vincent Millay, and this was her reply.

Love is Not All

By Edna St. Vincent Millay (1892-1950)

Love is not all: it is not meat nor drink

Nor slumber nor a roof against the rain;

Nor yet a floating spar to men that sink

And rise and sink and rise and sink again;

Love can not fill the thickened lung with breath,

Nor clean the blood, nor set the fractured bone;

Yet many a man is making friends with death

Even as I speak, for lack of love alone.

It may well be that in a difficult hour,

Pinned down by pain and moaning for release,

Or nagged by want past resolution’s power,

I might be driven to sell your love for peace,

Or trade the memory of this night for food.

It may well be. I do not think I would.

---

---

If you liked this post, please send it to a friend. If the reading audience grows, agents and publishers become suddenly far more keen on joining in the Adventures of TAT!