AMA Journal of Ethics : The Importance of Listening in Treating Invisible Illness and Long-Haul COVID-19

Sly Saint

Sly Saint

Senior Member (Voting Rights)
Primary and specialty care clinicians strive to base diagnoses and treatment on specific, measurable abnormalities. Yet those with invisible, controversial illnesses such as myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) often have symptoms not explained by standard laboratory values. For instance, one of the cardinal features of ME/CFS is postexertional malaise, the exacerbation of symptoms—fatigue, pain, cognitive dysfunction—following exertion, which contradicts studies showing the health benefits of exercise. In these cases, overly physicalist approaches to caring for patients are not likely to be helpful, and a clinician’s willingness to listen to a patient’s experience of illness becomes essential.
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Although I knew instinctively that I was experiencing the chronic aftermath of mono—constant sore throat, swollen glands, brain fog, fatigue—all lab values were normal. I have an enduring memory of physicians peering at me with suspicion when I described my symptoms: Was I experiencing family problems? Work stress? Depression?

It wasn’t until 1988 that the Centers for Disease Control and Prevention (CDC) recognized this illness and gave it the radically misleading name, chronic fatigue syndrome (CFS), as if those of us with CFS were just tired from busy lives.1 Today, this illness is called myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and is more widely understood as a serious illness, but clinical suspicion and misunderstanding persist.2 The majority of textbooks and health professions curricula still include little or nothing about ME/CFS,3 and even well-intentioned clinicians often cannot provide the information their patients need.

A neurologist I saw recently, trying to help me stay active, raised her eyes from her computer screen to encourage me. “I read a study recently that recommended graded exercise for CFS.”

I was seated on the crinkly paper of the exam table, not sure where to begin. This assertion gets me—and so many patients with ME/CFS—where it hurts, since I love to exercise and for decades have tried repeatedly, and failed repeatedly, to increase how far I can walk. I took a breath. “Studies recommending graded exercise for ME/CFS have been discredited,” I said. “Or they included people who were depressed, who do benefit from exercise. But for people with ME/CFS, if we push ourselves to do more, we can make ourselves worse. That’s been my experience.”

She shrugged, “I can’t remember where I read it, but the study did recommend graded exercise.”

My time was up, and I left it at that. But this brief medical encounter was a complex moment, frustrating for me and probably for her, too. It’s worth unpacking.

My neurologist’s recommendation was based on an article she’d read—which she assumed to be based on reliable science—that concluded graded exercise therapy (GET) could produce positive outcomes for those with ME/CFS. Yet I knew from 42 years of experience that my pain and fatigue get worse if I consistently increase my exercise despite how I’m feeling, as GET recommends.
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https://journalofethics.ama-assn.or...isible-illness-and-long-haul-covid-19/2021-07
 
Great article. My only gripe is this obviously false statement:
In a devastating twist no one anticipated, we’re now seeing significant numbers of Covid-19 patients who continue to have debilitating symptoms, including PEM, months after contracting the SARS-CoV-2 virus or a variant, the so-called Covid long-haulers
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Although that's easy to miss for any one person, thousands of people did anticipate it, including some scientists, even left a record of it. This must be recognized, the pretense that this caught everyone by surprise needs to end, it's blatantly false. It caught most in the medical profession by surprise, to the point where far more patients with zero medical training anticipated it than the tiny number of physicians who did. That's something that needs to be addressed in its own right, is a scandal in its own right, and something that needs academic and ethical scrutiny, given the stakes and consequences of that failure.
 
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In a devastating twist no one anticipated, we’re now seeing significant numbers of Covid-19 patients who continue to have debilitating symptoms, including PEM, months after contracting the SARS-CoV-2 virus or a variant, the so-called Covid long-haulers
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"Experts shocked when some people who have caught a virus go on to develop post-viral illness".


I bet they get a real surprise when the sun rises every morning too.
 
Excellent article.

As the writer here says many witn ME know more about their illness than physicians do. I understand that can be the case in many other circumstances. Patients become experts in their own area of interest.

Several years into having ME, to be told by a physican my disease means my energy is at 50% of normal was unnecessary, and rather insulting, as I had experienced this for many years prior to my consult. It is so disappointing this repeatedly happens in doctor - patient interactions.
 
The author also notes the proselytizing done by some in the mental health field to convince those in medicine, and others that ME is psychological condition. Thereby, unfortunately tainting the reputation of pwME.

It should be said that it is very incorrect to view those with psychological conditions as suspicious characters. However, many in society still have this view. Thus, the negative PR spread about pwME has a global affect on our lives.

Growing up lot of us may have heard from our parents and others in authority that it doesn't matter what others think of you. Sadly, yes it does. For example, when a pwME reveals they have this illness, or when one's primary health care provider includes this in a referral letter, the interaction, assistance, etc., may be less than hoped for.

And, how disheartening, and maddening for the writer of this article to be told after 42 years of illness that GET will improve their health. :banghead:
 
@rvallee

Absolutely agree. For many, the phenomenon of LH COVID was not a surprise attack. The myth that everyone recovers from these diseases is very harmful.

It is interesting how willfully sightful our society can be about the dangers of some viruses, and recognize the potential for lasting effects. But be wilfully blind in other cases.
 
EzzieD said:
Excellent piece. And on Twitter, somebody just had to get his little dig in:

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He literally re-tweeted a (n alleged, dunno if genuine) Feynman quote a few days ago that said something like the difference with scientists is that they accept when they're wrong. There are rocks out there with more self-awareness. Or maybe he is here and is simply completely shameless and immoral. Who knows? Makes no difference anyway, same outcome.
 
rvallee said:
He literally re-tweeted a (n alleged, dunno if genuine) Feynman quote a few days ago that said something like the difference with scientists is that they accept when they're wrong. There are rocks out there with more self-awareness. Or maybe he is here and is simply completely shameless and immoral. Who knows? Makes no difference anyway, same outcome.
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Sharpe is so entertainingly devoid of self-awareness. And his putting himself on a par with Feynman is downright silly.
 
EzzieD said:
Sharpe is so entertainingly devoid of self-awareness. And his putting himself on a par with Feynman is downright silly.
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It's even a regular thing for him. He re-tweets quotes that literally apply to him being in the wrong, sometimes almost excessively so, in that they represent things he does all the time, that define his whole career. Still unsure whether he's Magoo level of clueless or if it's self-promotion, the way Wessely managed to have a reputation as a scientist despite being mediocre at it. Relentless self-promotion is basically their whole con.
 
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