Category: New Research

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#8 Down By the Riverside, Part I

Gonna lay down my burden

Down by the riverside . . .

And study war no more.

I’ve been living with chronic fatigue syndrome for a long time, well before I was officially diagnosed. For years, I managed to deal with it, until I no longer could.

I know my doctor was relieved when I finally consented to take a leave of absence from work, and though she never said so, she was probably doubly relieved when my position was “eliminated.”

I’ve been out of work for five semesters now. It has taken me this long to grasp the lengthy menu of ways I keep myself plugged in to activities, in spite of the lasting costs to my health.

Chronic Fatigue and Long COVID

This awareness has come about recently largely because of media coverage of an illness being dubbed “long COVID.” You’ve probably heard of it: People who have COVID-19 are suffering months later from debilitating fatigue, brain fog, joint pain, and other symptoms. The resemblance of long COVID to chronic fatigue syndrome (ME/CFS) is striking. In fact, as the Harvard Medical School blog reported last fall, Dr. Anthony Fauci said that long COVID might be “the same as or very similar to” chronic fatigue. 

In a fascinating read in a recent issue of The Atlantic, author Meghan O’Rourke points out the similarities between long COVID and conditions like ME/CFS, PoTS (postural tachycardia syndrome), and dysautonomia. O’Rourke (who herself suffers from a chronic illness and has been treated for Lyme disease) writes, “These are all poorly understood conditions that, evidence suggests, can be triggered by the body’s response to infections, with clusters of system-roaming symptoms that get grouped under one name.”

The attention on long COVID has been so great that even the PBS Newshour ran a beautiful and informative segment on ME/CFS from a patient’s point of view. It’s four minutes long and one of the best concise summaries of the history and impacts of the condition I’ve seen.

Post-Exertional Malaise

In all the articles I’ve read recently on these chronic conditions, one thing has bored a hole into my mind and won’t go away: the absolute necessity for patients to never exceed what some call their “energy envelope.”

One of the distinctive features of ME/CFS (and this may turn out to be true of long COVID as well) is post-exertional malaise, defined as “the worsening of symptoms following even minor physical or mental exertion, with symptoms typically worsening 12 to 48 hours after activity and lasting for days or even weeks” (CDC). Ron Davis, a Stanford scientist who has dedicated his career to finding a cure for ME/CFS, warns against ever letting oneself experience it. In an interview for CNN Health, he advises, “Know when you’re at your energy envelope limit. And don’t ever exceed it for any reason. Be serious about it.” He and the CDC suggest that “crashing” may prolong illness.

There’s no denying that for the past two-plus years I’ve been on a roller coaster of over-exertion and post-exertional malaise, an insane trip of over-do, crash; over-do, crash; over-do, crash. Like folks say, how’s that working for ya’?

Davis, in his interview, quotes an ME/CFS patient who suffered from the condition for five years and told him, finally, “I just got fanatical about it and decided I must never exceed my energy envelope. After a year of never crashing, I got over it.”

I have decided to do the same. I’m going to lay down my burdens by the riverside and stop warring with my beleaguered body. No more over-exerting. No more crashing.

I may have to give up a lot for a while, but every energy dollar I “bank” now may someday give me a fortune. 

P.S. Thanks to Steve Johnson for the “banking” metaphor and for sending me the Atlantic article. Love you, Steve!

P.P.S. If you want to listen to a happy-fun rendition of “Down By the Riverside” featuring Louis Armstrong, click here.

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#2 What Is Mast Cell Activation Syndrome?

If people were trees, I’d guess that one sapling in every forest has heard of mast cell activation syndrome. That’s most likely because fewer than one sapling in every forest has been diagnosed with the illness. But, according to the handful of medical researchers working on understanding the condition, there might be a pretty hefty stand of trees surrounding that one sapling that all have a mast cell disorder; they just don’t know it.  MCAS manifests as such a strange variety of symptoms that it is usually misdiagnosed as two or three or even ten other concurrent illnesses. The limited number of patients who have been diagnosed might be the tip of a very unpleasant iceberg.

I was diagnosed first with chronic fatigue syndrome and then with MCAS. That makes sense, because it now appears that MCAS may be chronic fatigue’s daddy.* In fact, MCAS may have an entire brood of distressing progeny: fibromyalgia, multiple chemical sensitivities, POTS, irritable bowel syndrome, and much more. The common thread here is that all these conditions are of unknown origin and were first dismissed by medical science as hooey. It’s possible—and I stress possible, because a LOT more research is needed—that MCAS is the root (or a root) of all these branches. If science can figure out what causes MCAS and how to cure it, we may be on our way to curing a whole tree of suffering.

So, what is mast cell activation syndrome? Here’s the Sesame Street explanation (keeping in mind that I am myself a student of MCAS, not an expert):

Mast cells were our bodies’ first defense against cellular invaders. Apparently, for a time, they were our only defense. They were the army before we had the air force, navy, and marines. As such, they had to do all the work of defending our bodies. Eventually, our bodies developed a more sophisticated defense, or immune, system, with lots of players doing the work the mast cells had once done on their own. But the mast cells haven’t been put out to pasture—oh no. They’re still around and playing an important part in our bodies’ defense system. Unfortunately, in some people, the mast cells are working way too hard. Maybe they didn’t get the message that they’ve got plenty of help now? They are not standing down at all, ever, and are firing on the very things they are meant to protect. They are overly activated, hence the name mast cell activation syndrome.

Mast cells originate in the bone marrow and then spread throughout every type of tissue in the body. They’re not numerous, but they do tend to concentrate where the body interacts with its environment—the skin, the digestive system, and the respiratory system. So symptoms of mast cell activation can include itching, flushing, rashes, hives, wheezing, sneezing, difficulty breathing, anxiety, panic attacks, low blood pressure, rapid or racing heart rate, gastrointestinal distresses of all types, sleep disturbances, and . . . yep . . . debilitating fatigue.

There’s so much to explain about MCAS. As I learn more, I’ll try to pass it along.

Julie

My primary sources for this post are both from Lawrence B. Afrin, M.D. One of his presentations is available on YouTube as Mast Cell 101, and his book, Never Bet Against Occam: Mast Cell Disease and the Modern Epidemics of Chronic Illness and Medical Complexity (Sisters Media, 2016) is widely available.

*When I originally wrote this post, I was under the impression that ME/CFS is caused by Mast Cell Activation Syndrome (MCAS). I have since learned that MCAS may more likely be a comorbid condition with ME/CFS. Or not. At this point, nobody really knows.