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THREAD: I wrote a piece for @Open_Notebook offering advice to science journalists covering contested illnesses, coming out of 15 years of being both a journalist and a patient. Here are some highlights, plus links to some of the high-quality coverage. https://www.theopennotebook.com/2021/01/26/how-to-report-with-accuracy-and-sensitivity-on-contested-illnesses/ 1/
When I got #mecfs, I was shocked that science, medicine, and journalism on my illness were all… pretty bad. “I felt as though I had fallen through the looking glass and found that up and down and right and wrong and science and bullshit had scrambled into a nauseating mess.” 2/
With long Covid, “journalists will play a major role in determining whether these new chronically ill patients face the same ignorance and disregard experienced by patients with other contested illnesses.” 3/
“Good science journalists ordinarily aim to present the scientific consensus… But with contested illnesses, there is no scientific consensus on many or even most questions; that is the essence of their contested nature.” 4/
“It is easy to be fooled, though, because powerful scientists often express strong opinions that they present as representing a consensus when in fact, many other highly respected researchers disagree. Always remember that credentials aren’t the same as correctness.” 5/
“Regard patients as experts. They are the only people who can observe an illness from the inside, so they offer critical expertise.” 6/
“Too often, empathy is interpreted as a kind of condescending softheartedness. For example, journalists sometimes write, ‘I believe their suffering is real… even if it might be mostly in their heads.’ It’s no gift to merely say you don’t believe someone is out-and-out lying.” 7/
“Patients with contested illnesses are among the most vulnerable populations there are. They’ve lost power in so many ways.” There’s loss of health and (often) income and access to skilled healthcare, plus prejudice and an active denial of their most basic bodily experiences. 8/
“Avoid the temptation to use psychology as a magic wand to fill in gaps in scientific understanding of how poorly understood ailments work, and be watchful for sources who do so. Like any theory, psychological explanations of disease require evidence.” 9/
“Remember that you could become ill too, that individual virtue doesn’t suffice to fend off illness, and that every single one of us faces physical decline eventually.” This will help you avoid ableism, one key prejudice to watch for. 10/
Sexism too: “The mere fact that an illness affects women more frequently has been repeatedly used as evidence that the illness is psychological.” So we don’t dedicate research $$ to it—why bother? Then lack of scientific understanding reinforces the idea it’s psychological. 11/
“Avoiding bias and being empathetic aren’t just necessary for being a nice person—they’re essential for getting the story and the science right.” 12/
Watch for language traps. One example: Don’t abbreviate “chronic fatigue syndrome” as “chronic fatigue.” The former is an illness with symptoms far beyond fatigue, the latter is a symptom common to many, many illnesses. 13/
Editors: Hire writers w/ contested illnesses. Considering us biased “is a bit like considering Black reporters biased on stories on race. There’s no neutral position: We all have a race, and we all have bodies w/ varying capacities. Ignorance does not equate to lack of bias.” 14/
“Please, please, cover these illnesses, and invest the effort and care required to do so well. Patients and patients-to-be—and, hopefully, people who might have gotten sick but won’t because of the research that will protect them—need you.” 15/
Here are some pieces that have done an excellent job covering contested illnesses. Happily, I know of more than I feel like I should list! If you know of excellent pieces on contested illnesses I haven’t included here, please add them. 16/
@moisesvm recently wrote an excellent piece on #longCovid and #mecfs: https://www.nytimes.com/2021/01/21/magazine/covid-aftereffects.html 22/ 17/
@GeorgeMonbiot wrote a piece on the same general subject that is also excellent: https://www.theguardian.com/commentisfree/2021/jan/21/were-about-to-see-a-wave-of-long-covid-when-will-ministers-take-it-seriously 18/
@edyong209 has done extraordinary work on long Covid that I think will have lasting impacts: https://www.theatlantic.com/health/archive/2020/06/covid-19-coronavirus-longterm-symptoms-months/612679/ and https://www.theatlantic.com/health/archive/2020/08/long-haulers-covid-19-recognition-support-groups-symptoms/615382/ 19/
@jillneimark wrote about multiple chemical sensitivities and toxicant-induced loss of tolerance (TILT): https://www.discovermagazine.com/the-sciences/extreme-chemical-sensitivity-makes-sufferers-allergic-to-life 20/
These two pieces were pivotal in improving ME/CFS coverage. @OlgaKhazan wrote about the political realities of ME/CFS: https://www.theatlantic.com/health/archive/2015/10/chronic-fatigue-patients-push-for-an-elusive-cure/409534/, and @AmyMaxmen wrote about ME/CFS research: https://www.nature.com/articles/d41586-017-08965-0?WT.feed_name=subjects_biotechnology. 21/
Julia Craven reported on Covid among inmates at Rikers Island, a population whose health concerns are almost entirely ignored: https://slate.com/news-and-politics/2020/04/the-coronavirus-crisis-among-incarcerated-people-in-new-york-claims-its-second-fatality.html 22/
@tomchivers recently wrote about a controversial, “cultish” treatment for ME/CFS that gets patients to believe it’s psychological: https://www.buzzfeed.com/tomchivers/inside-the-controversial-therapy-for-chronic-fatigue 23/
@mayadusenbery and I wrote about Lyme research: https://slate.com/technology/2018/06/the-science-isnt-settled-on-chronic-lyme.html 24/
And here's @davidtuller1’s magnificent act of public service in debunking the PACE trial, which falsely claimed that cognitive behavioral therapy or graded exercise therapy can treat and even cure chronic fatigue syndrome: https://www.virology.ws/2015/10/21/trial-by-error-i/ 25/
Also, I want to call out a few key books. @oslersweb’s Osler’s Web is the definitive history of ME/CFS. @pam3001’s Cure Unknown gives a guide to the science of Lyme disease. @marybethpf’s Lyme: The First Epidemic of Climate Change gives more recent research. 26/
I wrote my book http://bit.ly/through_the_shadowlands substantially with science writers in mind, to pull readers through the rabbit hole with me and experience the shift in perspective that comes with it. 27/
Finally, two brand new, extraordinary books. @tracieawhite and Ron Davis just published The Puzzle Solver, which is an amazing story of a top-notch scientist racing to save his son’s life. And @NotTheWhiskey published his powerful memoir When Force Meets Fate TODAY. /end
Oh wait! One more really important book: @mayadusenbery's Doing Harm, on gender bias in medicine. Guaranteed to make your blood boil and give you research to back every bad hunch you've had about the medical system for women.
