Article: How to Report with Accuracy and Sensitivity on Contested Illnesses. 2021. Julie Rehmeyer

[John Mac]

When I became chronically ill, my perspective on both science and science writing transformed. Before that, science seemed like a tool that could shed light on nearly any question. Even in the rare situation in which it couldn’t, I certainly expected it to at least provide a kind of foundational starting place. Scientists, I assumed, would always be allies. And science writers, at least the really good ones, I expected would pretty much get the story right.

But in 2006, when I was diagnosed with chronic fatigue syndrome (also called myalgic encephalomyelitis or ME/CFS), this scientific grounding fell away beneath me. I discovered not only that there were no FDA-approved treatments for ME/CFS, but that scientists couldn’t even agree on what this diagnosis meant; that most doctors didn’t know the basic facts about the illness; that the great majority of the available science on ME/CFS was of poor quality, and the science that appeared the most solid was actually flawed to a point that approached fraud; that government agencies frequently spread false information about ME/CFS; and that merely mentioning my illness raised doubts, in the minds of many, about my reliability and even sanity. 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.

https://www.theopennotebook.com/202...uracy-and-sensitivity-on-contested-illnesses/

 

[shak8]

And my father who taught graduate science writing journalism, said after I told him I was diagnosed with fibromyalgia:

"I don't believe in fibromyalgia. I read an article in the New York Times--it isn't real."

And this is after I withheld the diagnosis information for months, keep it to myself.

I guess file this to the "occasional allowed slip-up of a parent."

 

[cfsandmore]

And my father who taught graduate science writing journalism, said after I told him I was diagnosed with fibromyalgia:

"I don't believe in fibromyalgia. I read an article in the New York Times--it isn't real."

And this is after I withheld the diagnosis information for months, keep it to myself.

I guess file this to the "occasional allowed slip-up of a parent."

Did your father ever see the light and come to accept fibro is real?

 

[Hutan]

It's a pretty good article. It reminded me just how hard it is for journalists coming into the ME/CFS story cold to get enough knowledge to write without mistakes and mis-representation.

 

[Sean]

It's a pretty good article.

I agree.