Journalist Miriam Tucker wrote on Twitter this week: “Patient reaction to the chronic fatigue syndrome name change has been mixed.” And then she linked to a blog post by Tina Tidmore, who describes herself as a newspaper editor and publisher until 2009 when her health deteriorated and she changed to a freelance communications career. Now, “I do most of my work from bed,” her biosketch explains.
I kept reading because – although there was a lot of news coverage of the Institute of Medicine’s proposed name change for CFS – to systemic exertion intolerance disease or SEID – there weren’t many patient perspectives in mainstream news media stories that I saw. Or at least none that went very deep.
Ms. Tidmore’s post, “The New Name – Three out of Four Ain’t Awful, But Is It Enough?“, was at times educational, funny and poignant.
Regardless of what you think of the name change, her blog post is a good read.
By the way, you might be interested in following the #SEID hashtag on Twitter for many other thoughts on the name change and on the IOM report.
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