MS Hope or MS Hype? This Writer’s Dilemma

MS Hope or MS Hype? This Writer’s Dilemma

MS_Wire_Ed_Tobias

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?

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As I approach my second anniversary writing “The MS Wire” column, here are some promises to you.

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.

You’re invited to follow my personal blog at www.themswire.com.

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Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.

12 comments

  1. Hans Martin Norberg says:

    AS regards MS, are you in a position to write an article about the pros and cons of stem-cell-treatment (HSTC), including an overview of things for MS sufferers to keep in mind when judging one hospital in favour of another, as well as make a list of world-wide-hospitals that offer the said treatment?

  2. Gale Langseth Vester says:

    Thank you for sharing your writing commandments. Would that everyone everywhere kept to them, but we know all too well that our retinas are little better than livestock, with their fodder flowing through, or perhaps even overflowing across the banks of this information river.

    • Ed Tobias says:

      Hi Gale,

      Thanks for taking the time to share your comments. I try to write only what I know and what I can confirm. That was drilled into me through my whole career.

      Regards,

      Ed

  3. Marilyn L. says:

    I think the overall subject you are discussing in your article is important. So many times while attempting to halt the progression of this ugly disease, I try to hold my head high and be as positive as possible. In my opinion pharma and insurance, own us. Clearly the majority of those in the MS neurological realm want to help those of us with MS. But a few, are harsh and manipulative. Therefore, I believe your viewpoint surely needs consideration. In fact, it is quite worthy. Thank you.

    • Ed Tobias says:

      Thanks, Marilyn. I appreciate your taking the time to comment and I’ll keep trying to reporting, through the eyes of an MS patient, as best I can.

      Ed

  4. Mandy Harbison says:

    Thank you so much for this honest look at and reporting of all the latest MS research and news. As a progressive MS sufferer I am SO sick of reading about the latest ‘cure’ or ‘wonder drug’. I am happy to try almost anything! but don’t give me more false hope. Mandy

    • Ed Tobias says:

      Hi Mandy,

      I try to represent the needs of others with MS when I write and I’m glad you think I’ve been reasonably successful at doing that. Comments like yours keep me going on those days when fatigue tells me “not today, Ed.” 🙂

  5. Cyndi says:

    Hi Ed,
    Wrote this earlier today but forgot to “post it”. Let me add my thanks to you for your responsible, thoughtful journalism. Feel good hype runs hollow when addressing — indeed, assessing — the plethora of information about our disease.

    • Ed Tobias says:

      Hi Cyndi,

      I’m glad you remembered to send your note. As someone who spent more than 40 years working as a journalist and nearly 40 years living with MS I think I’m pretty good at filtering out the hope from the hype. I’m very glad that you think that I’ve been doing that.

      Thanks for your comments.

      Ed

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