by Carolyn Thomas ♥ @HeartSisters
I was late in discovering the writing of Ed Yong. The British-American journalist had already been a staff writer at The Atlantic for six years before I first read one of his articles, but it was his rare ability to make the most complex science make sense which convinced me to start reading everything he wrote. Here’s how Ed’s own editors described his series of articles on the COVID pandemic which won him the Pulitzer Prize for Explanatory Reporting in 2021: “Ed Yong anticipated the course of the coronavirus pandemic, clarified its dangers, and illuminated the government’s disastrous failure to curb it.”
One of the early issues that Ed Yong zeroed in on was that physicians seemed remarkably dismissive of people who were suffering terribly with what’s now called Long-COVID. But Ed and a small spattering of other science writers were taking those patient reports seriously. And in his regular newsletter, Ed described the important role of journalism as helping “to make people who feel invisible feel seen”.
Ed recently wrote about those days in a New York Times essay.
“In the early months of the Covid-19 pandemic, when many people who are now still sick were first infected, the common wisdom was that the coronavirus either sent you to an intensive care unit or, more commonly, caused mild symptoms that resolved after two weeks.
“But when my sister-in-law got infected in March 2020, she was still burning with fever after three weeks, then six, then more. Young and formerly healthy people shared stories about surviving – yet not recovering.
“And when I interviewed scientists and clinicians about these lingering symptoms, most expressed surprise.”
The problem, however, was that this was NOT surprising. Yong describes affected patients back in May 2020 who had already “formed online support groups thousands strong, coined terms like Long-COVID and Long-Haulers, and even conducted research on their own patient communities.” Why weren’t physicians believing them?
During the earliest reports from these COVID Long-Haulers (now defined as ongoing debilitating symptoms that continue far longer than eight weeks at least 2 months with no other explanation), few scientists or physicians seemed to know that Long-COVID existed – and more importantly, many even doubted that it did, as Ed explained at the time:
“Some researchers still hesitate to recognize Long-COVID if it doesn’t present in certain ways; they’re running studies without listening to patients, who are growing frustrated that what is self-evident to them – that their condition is very real and in need of urgent attention – is taking a worrying amount of time to even be acknowledged.”
This paragraph, by the way, accurately captures how women like me, whose cardiac symptoms have been initially dismissed by physicians, repeatedly describe their own suffering as that sense of not being listened to, or of being abandoned by the very people we turn to for help – even during a cardiac event that is “very real”. This is particularly important for women, whose cardiac concerns continue to be under-diagnosed and under-treated compared to our male counterparts. See also: Fewer ambulance lights/sirens when transporting female heart patients
And aside from reproductive health issues, physicians now in practice have likely received little if any specific med school training in women’s health, as Emergency physician and author Dr. Alyson McGregor reminds us in her book Sex Matters: How Male-Centric Medicine Endangers Women’s Health and What We Can Do About It :
In his New York Times column, Ed Yong shared the poem called “Why Bother?”, written by Pennsylvania poet Sean Thomas Dougherty:
“Because right now, there is someone/
out there with/
a wound in the exact shape/
of your words.”
Sean Thomas Dougherty’s line about “a wound in the exact shape of your words” reflects the exquisite relief felt by patients when their suffering is finally and publicly validated by others who believe them.
It turned out that Ed Yong’s writing about Long-COVID clearly helped to expand awareness of this uncounted and overlooked group of patients he described as “not sick enough to be hospitalized, but still facing months of suffering that could turn into years of disability.”
As early as June 2020, for example, The Atlantic published Yong’s compelling article about these COVID “Long-Haulers” called COVID-19 Can Last for Several Months.
In the following 60 days, over one million people read Ed’s online article.
But the patient narratives coming from Long-Haulers were barely on the radar of the academic researchers churning out COVID publications in medical journals. Well over 100,000 articles about the new pandemic were published in 2020 alone. Yet despite the unknown nature of this new virus and its science, medical journal editors took far less (rather than more) time over submission acceptance decisions, according to a later analysis of 339,000 scientific papers on COVID submitted for publication in medical journals.(1)
And even Dr. Anthony Fauci had initially referred to Long-COVID patient narratives in 2020 as just “anecdotal”.
But within a month after Ed Yong’s June article was published, Dr. Fauci admitted to a CNN news interviewer:
“There is no question that there are a number of individuals who DO have a post-viral syndrome. These are people who recovered, but really do NOT get back to normal.”(2)
In America, it took another year to add the diagnosis of Long-COVID as a recognized condition that could result in a disability under the Americans with Disabilities Act (ADA) in 2021. Here in Canada, a government task force published these report recommendations on Long-COVID in 2022.
But back then in 2020, day after day, I too was observing a disturbing reaction on social media to these emerging reports from people who had recovered from COVID, but were still nowhere near “normal”. Skeptical physicians on Twitter, for example, were openly mocking patients who reported debilitating symptoms of Long-COVID. Meanwhile, Ed Yong was learning that many physicians unfamiliar with this new condition were offering unhelpful or even dangerous advice – like “hurtful exercise regimes, or insisting that dizziness was caused by earwax build-up.” He also wrote:
“Although the common wisdom was that people infected with the COVID-19 virus mostly get mild symptoms that resolve after two weeks, thousands of COVID Long-Haul patients had already been debilitated by months of extreme fatigue, brain fog, breathing difficulties, and other relentless, rolling problems. It took over a year for the biomedical community to begin to identify Long-COVID patients as Long-COVID patients.”
More recently, Ed elaborated on how it can feel to sick people when physicians do not believe them (again, a description sadly familiar to many female heart patients). He wrote:
“Dismissal and gaslighting — ‘you’re just depressed; it’s all in your head’ — are among the worst aspects, and can be as crushing as the physical suffering. They’re hard to fight because the symptoms can be so beyond the realm of everyday experience as to seem unbelievable, and because those same symptoms can sap energy and occlude mental acuity.”
And that’s where science and health journalists like Ed Yong can make a difference. As he now believes:
“Journalism can be a conduit for empathy, putting words to the indescribable and clarifying the unfathomable for people too sick to do it themselves.”
This is tremendously important to patients. Here in Canada, we have many dedicated health/science journalists – André Picard at the Globe and Mail and CTV’s Avis Favaro immediately come to mind for their tireless efforts “to make people who feel invisible feel seen.”
Ed Yong believes that journalists can act as a care-taking profession — one that soothes and nurtures, adding that “words are ours to provide, those wounds ours to plaster. We are among the only professions that can do so at a scale commensurate with the scope of the crises before us.”
Image: ri1yad at Pixabay
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1. Sun Z et al. “Expedited Editorial Decision in COVID-19 Pandemic”, Journal of Informetrics, 2023 Feb;17(1):101382.
2. Fox M. 2020. “Coronavirus May Cause Fatigue Syndrome, Fauci Says”, CNN. July 9, 2020.
♥
Q: Have you discovered journalists who publicly “clarify the unfathomable for people too sick to do it themselves?”
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♥ If you’d like to hear more of Sean Thomas Dougherty’s poetry, watch this 4 1/2 minute video of him reading his poem “One Sentence on Pain” at the One Silo City Reading Series last summer.
♥ Ed Yong writes an online newsletter called“The Ed’s Up” (it’s free to subscribe, but you can also pay for a monthly subscription if you’d like to support his work). His latest book is called An Immense World: How Animal Senses Reveal the Hidden Realms Around Us
♥ NOTE FROM CAROLYN: I wrote much more about differences between how male and female heart patients are researched, diagnosed, treated and reported in my book, “A Woman’s Guide to Living with Heart Disease”. You can ask for it at your local library or bookshop (please support your favourite independent booksellers) or order it online (paperback, hardcover or e-book) at Amazon – or order it directly from Johns Hopkins University Press; use their code HTWN to save 30% off the list price when you order.
Happy New Year to Ed Yong, Sean Thomas Dougherty, André Picard, Avis Favaro – but especially to all of my Heart Sisters readers!
♥
Heart Sisters 
Hello Carolyn,
Your post resonated with me, about physicians not listening properly to their patients.
When I first was diagnosed with atrial fibrillation and subsequent ME/CFS, my doctor’s advice was just to exercise more, even though that brought on immediate Afib, chest pain and even more fatigue.
I have just received similar advice from my GP regarding my visit about difficulty walking – exercise more, and by the way there’s a lot of wax in your ears that may be causing your imbalance!
Thank goodness for journalists who write about these issues and therefore help to educate the public and, hopefully, medical professionals.
Happy New Year!
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Susan . . . I hear you!
Because I am overweight, I have heard from my doctors for decades that absolutely every symptom I have could be fixed with diet and exercise.
Like you, most exercise makes every symptom worse! The only “exercise” I can tolerate (besides taking a short walk on land) is walking in a warm therapy pool. I can actually enjoy that!
Finding a doctor that resonates with you can be quite difficult. Keep looking!
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Hi Susan – Good grief! Isn’t it interesting that your own medical fix recommendations (‘do more exercise’ and ‘ear wax’) included the exact same two (wrong!) guesses from doctors that Ed Yong also wrote about in Long-COVID patients?
I had the same resonating reaction to Ed’s writing that you did: THANK GOODNESS for journalists like the writers I mentioned (among so many others).
They’re like a dog with a bone once they get going on these medical mysteries. If not for science/health writers, I wonder if doctors would still be mocking Long-COVID patients as just being hypochondriacs. . ?
Happy New Year to you, too Susan! ❤️
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I so appreciate the research you do to find quality sources for information for us. Thank You!
My brother has long COVID and is indeed frustrated that people generally see him as a malingerer … with comments like “I had COVID and I’m fine!”
As a nurse, a large part of my job was to educate patients and their families about their disease, its treatment and progress in understandable terms. Rounding hospital doctors often dropped huge amounts of information on patients and families, but did not stick around to make sure they truly understood or even heard what what was said!
Speaking of doctor visits, I just had a surprisingly good visit with my new Cardiologist. He delved deep into my symptoms for 30 minutes, wanting to understand thoroughly in what order they occur as well as triggers for my increased heart rate, shortness of breath, chest pain, back ache – before recommending a course of action.
He ended up recommending an increase in medication which seems to be helping already! So much more helpful than another Cardiologist’s recommendation to eat more vegetables and exercise more!
Sorry, I got off topic. But appreciate being able to express my self. Have a wonderful day and stay warm.
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Hello Jill – I suspect that, like your brother, most people suffering from Long COVID have been suspected of malingering. That kneejerk response “I had COVID and I’m fine!” is so hurtful and insulting.
I remember reading that Long-COVID is increasingly found in those who had very mild symptoms of the initial virus infection, thus concluding that “it’s like a simple cold” or “it’s no big deal”. Until they develop Long-COVID, that is.
Don’t know how common this was in the U.S. but I’ve also heard that many people currently suffering with Long-COVID weren’t diagnosed in the hospital or at an official testing clinic once at-home testing kits became available – and thus were not eligible for minimal extended health insurance benefits – because there was no medical confirmation of their original diagnosis.
Hey! Great news about your new cardiologist, Jill! I love reviews like yours!! Just curious: was this a younger or older doc?
Take care, stay warm! ❤️
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The “eat more vegetables” Doc was late 30s/early 40s. I dropped him like a hot potato!
My current doc is the same age, early 40s. Their attitudes were like night and day. I picked the first doc because he had given an in-service on the latest medication used for HOCM (hypertrophic obstructive cardiomyopathy) and I thought being up to date on HOCM would be an asset. I picked the second doc because his middle name is Shiva and he has a background in Indian culture.
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Jill, you’re the only person I know who picks doctors by a middle name. . . 🙂 ❤️
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Dear Carolyn
Many thanks for all that you do. You might be interested in the work of yoga teacher Fiona Agombar, who has pointed out the similarities between long covid and ME (Myalgic encephalomyelitis/chronic fatigue syndrome) having experienced ME herself.
I recently had cause to visit my local health centre, St Caths on Wirral, Merseyside UK. They have a large display in reception about HEART FAILURE…. So, when I returned my heart monitor, I included a short letter referencing your work regarding the F word and suggesting it was time to use alternative vocabulary.
A few days later, a lovely nurse called me to explain that the staff in the health centre had raised concerns about the F word, and they have suggested that it’s time to look for alternatives.
BUT NHS management have told them that they have to stick with the term heart FAILURE, despite all its negative connotations.
It’s very sad and frustrating. So thanks again for trying, and I hope that one day common sense prevails.
With very best wishes,
Kate
Yoga for Health and Wellbeing
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Hello Kate – thanks so much for letting me know about your own proactive efforts to help change the hurtful term heart FAILURE.
Just imagine what might change if every heart patient spoke up as you did, time after time, to let the powers-that-be know that this name is no longer acceptable.
That NHS reaction is completely predictable, and equivalent to saying “We can’t change because that’s the way we’ve always done it” which is a preposterous excuse for not doing what’s right. As one American cardiologist bluntly told me, “We can’t change the name because it’s in our billing codes!”>
And I’m glad you mentioned Fiona’s work on the similarities between Long-COVID and ME/CFS patients. In fact, one over-arching current reality has been the reports from these Long-COVID communities that began putting the two together. Both are considered post-viral conditions triggered by infection, as this interview from The Society To Improve Diagnosis in Medicine suggested: “Stanford University researchers observed back in 2020 that it might take a pandemic for the scientific community to take myalgic encephalomyelitis/chronic fatigue syndrome seriously.”
They were correct. Ignoring, dismissing and misdiagnosing people with ME/CFS symptoms had become somehow shockingly normalized throughout medicine leaving people to suffer.
Maybe emerging research on Long-COVID will help to ease suffering in both kinds of patients?
Take care. . .❤️
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Hello Helen – I had to laugh at your anticipation that this post would make you feel outraged. I’m glad it didn’t!
I too felt comforted when I read skilled health/science journalists like the ones I mentioned here going to bat for patients, to “help make people who feel invisible feel seen…”
Journalism can indeed be a powerful tool, which is why good journalists deserve to be acknowledged, supported, thanked and shared. Ed Yong, for example, is no longer writing for The Atlantic, but his online writing continues (and being a Pulitzer Prize-winning author means people will pay attention to his words).
But once these journalists “come over to our side”, I believe that the result can influence politicians, researchers, and the medical profession to make positive changes in the future.
By the way, I too plan in advance how best to communicate with doctors “in a way that he/she will actually listen and take me seriously”. I’m acutely aware that a busy, overwhelmed, exhausted physician may or may not be taking my concerns seriously – so my job is to help get my important messages across!
Take care, Helen. . .❤️
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