As Long COVID spreads, and chronic fatigue syndrome (ME/CFS) moves into the limelight a bit, what a time to have a medical historian with post-cancer fatigue document how fatigue has been misunderstood through the ages. And how good to have Dorothy Wall, the author of “Encounters with the Invisible: Unseen Illness, Controversy, and Chronic Fatigue Syndrome“, review this timely new work.
Emily Abel, Sick and Tired: An Intimate History of Fatigue (Chapel Hill: University of North Carolina Press, 2021)
What happens when a patient’s ongoing fatigue is misunderstood and dismissed, and she happens to be a medical historian? We get a smart new book, Sick and Tired: An Intimate History of Fatigue.
In 1993, after six months of treatment for breast cancer, including surgery, radiation and chemotherapy, Emily Abel experienced profound fatigue that did not go away. Her oncologist reassured her: “A year. It will take a year to feel like your old self.”
That year passed, and another, and another, and Abel was not her old self. She reduced her teaching load at U.C.L.A., rested in her hotel room during academic conferences, and tried to keep up appearances. Friends told her she looked fine and colleagues tired of hearing her concerns. She was baffled by her continued exhaustion, wondering if it was somehow psychosomatic, and galled by the “celebratory breast cancer culture, publicizing survivors engaging in physically challenging activities.”
Frustrated, Abel decided to investigate fatigue herself. Fatigue, of course, is a huge and unwieldy subject. There’s no agreed-upon definition, umpty-ump causes–from anemia to multiple sclerosis to traumatic brain injury–and many types. There’s the fatigue of ordinary life and pathological fatigue; acute and chronic fatigue; mental, physical or emotional fatigue. Any book on fatigue is an ambitious undertaking.
Abel’s work stands out as one of the first to tackle the nature and representation of fatigue itself, presenting an absorbing, incisive cultural history. What is this amorphous thing called fatigue? How have medical and cultural ideas of fatigue evolved? Interwoven with her own fatigue story, she elucidates this history and how our understanding of fatigue may, finally, be changing.
To those with contested illnesses, Abel’s story is all too familiar. It’s not surprising that as she searched for understanding, she turned to the literatures on pain, and on other fatiguing illnesses, such as ME/CFS and Gulf War Syndrome, to find parallels with her own experience. As she observes, “...there are no diagnostic tools for fatigue. I thus faced the same issue as those suffering from pain and various contested diseases–without medical confirmation, we cannot convince others (and sometimes even ourselves) that our problems are real.”
As she delved into the historical and personal literature of fatigue, Abel found three broad themes: the denigration or dismissal of subjective knowledge, the knowledge that each person has of his/her own body; our cultural emphasis on productivity and the work ethic, in which a person’s personal worth is often tied to what she/he can produce; and the dominance of triumphal narratives, in which “with enough grit, hard work, and determination, individuals can overcome any adversity.” Obviously, these cultural narratives work against any chronically ill person whose reports of fatigue are not backed by laboratory findings, whose productivity is limited, and who doesn’t get all better.
Abel describes the broad arc of the fatigue narrative, beginning with its first appearances in the medical literature in the mid-1800s, along with an emerging focus on neurasthenia, industrial fatigue, and battle fatigue. Close on the heels of diagnosis came the cures, everything from the rest cure to exercise, from home-made nostrums to amphetamines. By the twentieth century, vaccines and antibiotics bolstered the belief that disease could be overcome, and increased the marginalization and disparagement of those who didn’t recover. They must not want to. They’re just depressed.
The parallels with ME/CFS run throughout Abel’s book, from the poor fit between chronic illness and our western medical system, to the isolation of the ill when those around them fail to understand their condition, to how gender, race, or socioeconomic status can impact disease perception. Her section on ME/CFS mostly gets it right, sketching the ways a psychiatric interpretation of ME/CFS has harmed patients and hindered research progress. She mentions the 2011 PACE trial that touted graded exercise therapy and cognitive behavior therapy for CFS, and the study’s debunking by journalist David Tuller and others; the Institute of Medicine’s updated clinical case definition for ME/CFS in 2015; and recent patient activism, such as Jennifer Brea’s video, Unrest.
Like so many stories of illness, the fatigue story is one of myth-busting, fueled by committed patient and medical advocates, the disability movement, and a growing body of new research. After almost two decades of struggle and confusion, Emily writes: “Finally I learn that as many as 25 percent of the women who undergo surgery, chemotherapy, and radiation for breast cancer experience fatigue at least ten years after the end of treatment.” Once Abel understands the long-term nature of her fatigue, and the likelihood that a full recovery may not happen, she can finally listen to her body and do what’s best for her. “Once I abandoned my quest for a cure, I realized that my primary task was to learn how to manage exhaustion in a society that places a high value on personal energy and productivity.”
While the fatigue story is still in its infancy, Abel claims that “medicine has begun to place fatigue on its research agenda, slowly and somewhat haltingly acknowledging that the condition is far more serious and prevalent than widely assumed, highlighting the difference between chronic and acute fatigue, and searching for both diagnostic criteria and treatments.” Let’s hope so. Abel’s book should help.
Dorothy Wall (www.dorothywall.com) is author of Encounters with the Invisible: Unseen Illness, Controversy, and Chronic Fatigue Syndrome (Southern Methodist University Press), and the poetry collection, Identity Theory (Blue Light Press). Her latest piece “The Importance of Listening in Treating Invisible Illness and Long-Haul COVID-19” appeared in the AMA Journal of Ethics.
She has taught poetry and fiction writing at San Francisco State University and U.C. Berkeley, Extension, and works as a writing coach in Oakland, California.
This looks like a great read. Bravo for the work and research. But just a personal note: my daughter who suffers from severe ME does not have fatigue, as it were. She has toxic feeling, malaise, sick feeling, OI, poisoned feeling. Exertion makes all these worse, and then a kind of fatigue sets in, but it is really weakness and malaise, not the sort of fatigue a healthy person feels. That is why I always found the name CFS strangely puzzling, and I have always like Prof. Davis’ SEID name–which did not really take off for some strange reason.
I always liked the SEID name as well, ands wish it had become commonly used. Not sure why that didn’t happen and we are still stuck with fatigue in the name. SO many times I’ve heard, “Well, everyone has fatigue.” Yes, they do. Just not like this. The no choice to keep going kind. My doctor told me the more I went to bed, the more tired I would get. I told her I understood the principle but that mine was a no choice kind….eyes going shut, head dropping, may-as-well-get-to-bed first kind of fatigue. Fuzzy thinking, blurry eyes type. I still don’t know if people who haven’t experienced it can really imagine it. I hope this book helps that.
I have had normal fatigue but nothing compares to this type of fatigue. It is like telling some suffering from migraines – yes, I have headaches, too. This would be a great read. Too many doctors in my past would never listen. Even referring me to psychiatrists.
That’s how I felt – poisoned ! Raymond Perrin helped me a lot with some sort of lymphatic drainage. I will never fully recover like many others but he helped me significantly.
I agree with you, fatigue is a ridiculous name for this condition!
Like your daughter, when I’m in a flare- up I am sick, not just tired. Closest I can come to describing it is that it feels like a really bad flu– deep exhaustion, everything hurts, can barely walk or even sit up—Sick!
It waxes and wanes and the slightest thing sets It off. I’ve been dealing with this now for more than 32 years. 32 years!!
That said, good for this women for writing a book that hopefully will help raise awareness. My experience says that since the medical community doesn’t know how to diagnose or fix it, they prefer to just not think about it. Yet here we are, and there are a lot of us—.
Same here — over 30 years. So far there is no money in finding a treatment, otherwise drug companies would be researching. AFter 30 yrs I received a dx from a neuro. A dx but no help at all. Just sent me home with a dx. Not sure why I was so excited about finally having an official dx.
There is nothing normal about fatigue suffered by a CFS patient.
Normal people get TIRED after doing stuff. CFS patients suffer fatigue 24/7. There is a difference. They wake up with fatigue, they go to sleep with fatigue.
My husband has suffered with CFS/ME/Fibromyalgia/SEID for over 11 years. Yes, all the names add to the confusion and misunderstanding.
There are NO good days.
I didn’t understand the difference either between tiredness and fatigue until after I had been through a year of cancer treatment which included chemotherapy for 6 months, surgery and then daily radiation for 6 weeks.
Fatigue: you feel like you are wearing a lead suit. You feel like magnets are pulling you down all the time. You feel like someone has tied cinderblocks to your limbs. You feel like you just got run over by a Mack truck.
God Bless all that suffer with these illnesses and the doctors and researchers trying to help them.
Yes, I couldn’t say it better–great descriptions of the fatigue of ME/CFS and other illnesses. So many of the other comments here create a vivid picture, too. Everyone who can express what goes on in the body so vividly is helping others to understand. Thank you, and I wish the best to your husband, to everyone who is suffering and to all those who are speaking out.
I agree, it is a toxic, poisoned, extremely ill feeling.
Exactly. Grateful Emily is taking time to write this book. I’m so fatigued I even find it hard to read articles or books in full anymore however. Hopefully this will get into the hands of the front line fighters for all of us so acutely ill with chronic fatigue no matter what the origin and cause. Especially insightful on the “productive people” attitude and it must be “depression” or even just “laziness”, something I was far from being before my still undiagnosed illness took hold of me like a pit bull on a piece of meat. Too tired to shake it off.
My ME/CFS came on the heels of my successful treatment for stage 3 uterine cancer. Three cancer survivorship clinics and my oncologist turned their backs on me.
It is great to hear of Emily’s story, we are definitely not alone.
Now that we’re learning about long COVID, it is interesting to hear about the same dynamics of viral reactivation, incomplete viral resolution, autoimmunity, etc. that also can happen to cancer survivors.
Sounds like a must read!
One thing I would add is that, in the case of ME/CFS, the distinction between fatigue and pain doesn’t always make sense of subjective knowledge. Perhaps Emily discusses this in the book?
I understand the need to distinguish, at least on a conceptual level, between fatigue/PEM/exhaustion/stimulation overload on the one hand and common pain symptoms (headache, arthralgia, myalgia, lymph node soreness, etc.) on the other. We need this distinction in order to compare ME to other illnesses, evaluate treatments, etc. as precisely as possible. But in reality, the most painful thing about ME is the fatigue itself, culminating in the acute flares or “crashes.”
It wasn’t until I described the deep painfulness of my fatigue/PEM that family and friends began to understand how different my “fatigue” was than other, more familiar forms. It’s not simply the absence of energy but a painful assault…more like a flu malaise than tiredness, yet somehow even deeper and more widespread. E.g. Imagine if every cell in your body seized with soreness, if your blood and bones felt weighed down by profound achiness, if there was a wildfire going on under your skin, etc.
Really good point about how fatigue and pain often seem inseparable for patients, yet research usually keeps them as distinct categories. Emily does explore the way pain and fatigue often coexist, how pain is a risk factor for fatigue, and how pain and fatigue go together in many long-term disorders. But your comment is one more example of why listening to patients is so important.
If you look at the newspapers of the original CFS outbreak, the struggle over the meaning of “fatigue” is apparent.
Patients described it as “drop dead exhaustion” or “Raggedy Ann Syndrome”.
Doctors insisted on calling it fatigue in spite of efforts to stop them.
Then something new cropped up. “chronic fatigue”
This combination jarred the intellect because the words are contrary to each other.
Fatigue is transient, relieved by rest. Chronic means persistent.
It was a contradiction in terms, intended to show there was something odd here.
Over time, the old meaning of fatigue as a temporary reaction to exertion slipped away, and now doctors think of fatigue as prolonged malaise. Totally forgetting that the original meaning was to keep fatigue separate from malaise.
No doctors or researchers ever came to study the Incline Village “mystery malady”
Yes, I know you heard the story of Cheney and Peterson who called the CDC for help.
But all they did was look at EBV serologies, kick around a few viral suspects, and gave up.
That was it.
No epidemiology was ever done. No one cared how this syndrome started.
All the “Raise CFS awareness” was bogus. These “advocates” never had any intention of getting anyone to examine the original evidence.
If you go around Tahoe and Truckee today, people swear they never heard of CFS.
The doctors in Peterson’s Alder Street office, where all this began, do not treat CFS.
And even swear they have no idea who Peterson is.
I know this because I asked them.
Feel free to come to Tahoe and ask around. You will find I am telling the truth.
@Erik Johnson I am curious if you have a theory on what instigated CFS/ME in Tahoe.
I”m just as excited that Dorothy Wall wrote this review as I am to learn of the book. Dorothy was a prominent patient and advocate who was instrumental in shifting the name of CFS to myalgic encephalomyelapothy (which also shifted to encephalomyelitis) fifteen years or so ago. I have tremendous gratitude for her work, though I have missed her voice in the patient community. Of course one’s relationship to their illness changes as it goes on into decades, and I respect everyone’s need to shift focus over time, to “have more life in their life” as they can, a phrase I’ve been using more myself the last couple of years. Dorothy’s book, Encounters With the Invisible, is a beautiful and timeless memoire on living with chronic illness. I welcome another book that places our experience within a historical and reflective context that connects us with the lived human experience across time… what the Humanities are all about.
Thank you so much, Carollynn, for your very kind words about my book and other work. I appreciate that. You and other readers may also be interested in the July 2021 online edition of the AMA Journal of Ethics, a special issue focused on “Invisibility and Measurability in Health Care.” I have an article in the issue, but there are many excellent pieces on how to support and listen to patients within a health care system that privileges laboratory tests and too often dismisses patients’ deep knowledge about their own bodies. https://journalofethics.ama-assn.org/issue/visibility-and-measurability-health-care
ThiS!
I just had an appointment with family doctor. I was asking about how the testing for insulin works.
He said, why, your blood glucose is fine.
And I said – do you want me to tell you about my symptoms?
They just sit there looking at their screens instead of looking at me and listening to me.
The one doctor that has ever helped me was a tropical infectious diseases specialist. I had been through five family doctors, and two gastroenterologists who all dismissed me. I had been living in a country with poor public sanitation, rife with infectious diseases. It wasn’t rocket science….
The specialist let me speak from the very beginning, did not interrupt me. History of onset and symptoms were critical for diagnosis. He knew from experience that negative test results are common when the parasites have been in the system for a while. Prescribed me two pills and that was it.
There is something deeply wrong in the way medical practice is done today. I have the faint hope that ME/CFS and the many other strange diseases is going to help turn that around.
Tell the White House Office of Science & Technology Policy (OSTP).
They are supposedly examining errors made in policies. https://www.whitehouse.gov/briefing-room/presidential-actions/2021/01/27/memorandum-on-restoring-trust-in-government-through-scientific-integrity-and-evidence-based-policymaking/
I look forward to reading this book! Over many years of being dismissed for being “fatigued” while feeling “sick”, and describing a toxic feeling, I started to use the term “toxic fatigue”. It makes me feel a little better anyway. LOL! Meanwhile, my primary care doc has labeled me an outlier. I live in a rural county with minimal number of medical choices and I realize she’s doing the best she can given the system she works within. While I was upset at first I realized that it’s an accurate term, just not useful. If I ever write a book I am going to use “outlier” in the title. ?
I believe a complete history of neuresthenia will reveal the deep roots of ME bias.
This historical diagnosis, still in the diagnostic manual, appeared in both theUS and the UK at their respective industrial ages – also the dawn of modern medicine.
Yes, the roots of bias run deep. Emily has excellent material in her book about the rise and fall of neurasthenia and its treatments, and I have a chapter on neurasthenia’s history and relationship to ME/CFS in my book Encounters with the Invisible.
Yes, everyone talks about CFS, pain, brain fog, FM but what about constant dizziness & sometimes into Vertigo?!? I have had all this since 1979. I would have thought by now it would of been ironed out knowing that viruses make us sick & so does the flu shots.
My Chiropractor believes that is multitude of viruses in our system. It start with me either Flu shots 1970’s : breast implants surgery, getting Herpes simplex, or Ebstein Barr.
Fatigue in the body and brain has been around for century’s.
Very interesting study: Long Covid patiënts have reactivated Epstein -Barr virus, looks like ME to me 🙂
https://www.mdpi.com/2076-0817/10/6/763
My son just called me out as a bad mother. Diagnosed when he was 10, divorced living on $15,000/year in child support. He made $245,000 that same year.
I became an MSW from Rutgers but collapsed after 7 years. I am in severe category now, dying of starvation. I’m no longer sad.
You can only do what you could.
So heartbreaking to read of people’s conditions. I agree with the comments ME is so much more than fatigue, it is multi-system. For me the cognitive impairment has combined with the deep physical impairment in reducing my life, especially in ending my work life. As Dr. Klimas said in the video and Cort nicely summarised :
“Many people stop working, not because of the fatigue, but because they just can’t do their work correctly anymore – it becomes too mentally challenging. Dr. Klimas ties this to the neuroinflammation and loads of oxidative stress found in ME/CFS patients’ brains – a fact that’s been definitively demonstrated in three NIH funded studies by Dr. Shungu.”
https://www.healthrising.org/blog/2019/11/17/klimas-sleep-nutrition-cognition-orthostatic-intolerance-chronic-fatigue-syndrome/