MS Hope or MS Hype? A Writer’s Dilemma

Let’s say there’s an MS study reporting that researchers have discovered a substance that seems to prevent nerve cell damage. But they’ve only studied this on mice. Or, there’s another study that claims that something can help reduce MS pain, but the study involves only 19 patients. Or, an MS patient is interviewed because, after using a new drug, she’s able to ditch her wheelchair and walk.

Those of us who write about illness see a lot of stories, studies, and press releases each week. Each of these leaves a patient columnist like me with a decision to make. Which do I write about? If I do, how do I make sure that I’m not giving you, as a patient, false hope about something while also not ignoring new MS advances?

My writing ‘commandments’

• I will not hype. I won’t repeat claims that something is the next, fabulous MS treatment just because a news release says it is.
• I won’t write a headline that’s not fully backed up by the content of my story.
• My columns will be balanced. Though it’s tempting to focus on positive results, because doing that attracts readers, I won’t overlook problems that were reported.
• I will put things into perspective. If a study is very small, that needs to be reported. If years of further study are still needed, that must be made clear. If the study was paid for by someone with a horse in the race, it needs to be revealed.
• I will use reliable sources. Some medical and scientific journals are better than others. Some take more care than others to vet their stories before publishing. I’ll try my best to know which sources are the best and which might be sketchy.
• I will remember that a report about one “miracle” patient doesn’t mean the treatment is a miracle.
• Similarly, I’ll remember that if a treatment “may” produce a certain result, it may also fail to do that.
• I will be extremely careful in choosing my adjectives and repeating those used by others. “Blockbuster” and “breakthrough” are words that will always raise a red flag.

You, as a reader, can also keep those “commandments” in mind when reading about MS. Be a skeptical reader.

The end of a health-writing watchdog

Health News Review is an organization working under the umbrella of the University of Minnesota’s School of Public Health that’s dedicated to keeping health reporting honest. Its journalists and healthcare professionals review stories and news release about health treatments, tests, products, and procedures, and grades them using 10 elements. The group holds our feet to the fire if we stray. (Full disclosure: Health News Review wrote an article about me a few months ago.)

Unfortunately, Health News Review is running out of money. Unless it finds someone with deep pockets, it plans to shut its doors at the end of the year, after a 12-year run. That would be too bad.

But with or without watchdogs such as Health News Review, you can still be a skeptical, questioning reader. I, in turn, will do my best to be a responsible writer.

(This post was first published as one of my columns on the MS News Today website).