One of the graphics used in the Vox story.
This lengthy story describes the results of a small, long-term, proof-of-principle trial of a “last-resort” risky but promising chemo-plus-stem cell transplant treatment designed for a limited sub-set of people with a severe, treatment-resistant form of multiple sclerosis (MS).
This is a well-reported story, covering many of the factual and contextual bases. The addition of infographics help readers visually understand the study findings, and a plethora of independent sources add credence to the claims.
There were three small things we’d have changed: The unfortunate headline (“doctors just reversed severe MS”), the questionably high prevalence data, and the use of a lengthy patient “miracle” narrative that overly delays mention of the treatment’s toxicities and limited availability. (Editor’s note: The prevalence data was corrected after we reviewed the story, but the original rating and comments stand. Corrections are valuable and we applaud any effort to increase the accuracy of news stories.)
MS is a progressive autoimmune disorder that attacks and damages nerve sheaths in the central nervous system, and is estimated to affect about 400,000 in the U.S. and perhaps 2.5 million worldwide (not 20 million as cited in the article), with prevalence rates greatly varied by climate and geographic location.
While there are treatments that control or delay many symptoms, there are treatment-resistant forms that affect about 5 percent of those with MS, and replacement of the damaged or faulty immune system via stem cell therapy has long been a holy grail for this population.
The article mentions a cost of $50,000 to $65,000. However, to us, that sounds on the low end, given the need to first knock out a patient’s immune system before reconstituting it with stem cell therapy; the high rate of toxic side effects that suggest long stays in intensive care unit, and so on.
The story does a very good job of offering relevant details of the study’s outcomes, and uses outside sources effectively to put the benefits in perspective. It is one of the few stories we’ve seen over the years that includes an infographic to illustrate the absolute number of people who received benefit, harm, or no difference in a study.
But, as noted above, the headline‘s message (“doctors…just reversed severe MS using stem cells..”) is hyped and a bit misleading in terms of how long it took the scientists to treat and follow up patients.
The story again does a terrific job of explaining toxicities and, using a patient’s own words, making clear that this treatment is no walk in the park. It is clear this is only for very severe cases.
The story makes clear that there is no control group and that these patients were selected for their particularly aggressive disease. But again, given the somewhat hyped headline and the length of reading time it takes to note the risks and still-experimental nature of the study, the article would have benefited from mention of these things earlier.
The prevalence is overstated, even given the imprecise nature of efforts to pin it down worldwide. And it takes too long for the article to note that this is still likely to be a “last resort” treatment. The vignette given is terrifying, and an example of what most patients fear the most with a new diagnosis of MS–terribly debilitating disease. This is in fact unusual.
(Editor’s note: The prevalence data was corrected after we reviewed the story, but the original rating and comments stand. Corrections are valuable and we applaud any effort to increase the accuracy of news stories.)
Yes, and the independent sources were very helpful.
Yes, and it does a commendable job–eventually–of explaining the pros and cons of the stem cell treatment. It is clear there are standard treatments and this is experimental.
The story did address availability, with this statement: “Theoretically, the treatment could be done in most blood and marrow transplant centers associated with major hospitals, Atkins said, but there are only a few that perform the procedure. Interested patients can contact the MS Society for more information.”
The article does a good job of explaining what’s new.
There is evidence of substantial reporting, and good use of charts and graphics.
Systematic, Criteria-Driven
Monday at #ADA2021, an infectious disease epidemiologist, a journalist, and a researcher shared perspectives on communication of risk in the era of COVID-19: http://ow.ly/ROfR30rMeE7 @AstleyCM @garyschwitzer @berthahidalgo @ADA_DiabetesPro
Shoutouts to @susan_bewley @drkevinknopf @MichaelBaum11 in this call for more than fawning coverage from press releases for these kinds of stories.
Also, linked history inside goes back 5 years just on Grail apparently trying to become Holy Grail. https://twitter.com/garyschwitzer/status/1408849696416841731
Comments (2)
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Bob Froehlich
June 21, 2016 at 7:54 pmThank you for your hard work and successful results.
Jordan Griesbeck
September 30, 2016 at 12:39 amI wish my mom could get this. She is about a 9 on the disabled chart. Only if there was hope
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