Yale hype could raise false hopes for myeloma cancer patients

Wait There's MoreWhen you read news issued by Yale University based on a study published in the prestigious New England Journal of Medicine, you might reasonably assume that the information you’re receiving is reliable and devoid of hype.

But you’d be wrong in that assumption.

A PR news release issued on February 10, 2016 announced, Yale researchers discover underlying cause of myeloma.”

The problem with that headline?

Thompson 200x200“The study is about a very specific patient population with a rare form of MGUS [monoclonal gammopathy of undetermined significance] associated with Gaucher’s disease,” says Michael A. Thompson, MD, PhD, a cancer researcher at the Aurora Research Institute and Aurora Health Care. “It may have some meaning for a few people per year, but it’s not the cause of myeloma in the average patient.” (Thompson has recently joined our project as an occasional contributor.)

He adds, “It’s an interesting observation but it’s far from the Nobel prize-winning discovery that’s suggested by the headline.”

The news release never clarifies the limited applicability of the findings or the rarity of Gaucher’s disease.

Problems with the Yale release were also flagged by Dr. Brian Durie, Chairman of the International Myeloma Foundation and a physician at Cedars-Sinai Medical Center in Los Angeles, California. Durie wrote that the research:

“…is not identifying what causes myeloma overall. Quite the contrary. It is a specialized example of how various body components can trigger an “autoimmune” reaction and these reacting plasma cells can give rise to myeloma. There are many famous examples of this phenomenon.”

The type of hype found in this news release causes harm through false hope. Thompson pointed me to a Facebook comment from Dana Holmes, who administers a Facebook group for myeloma patients. She wrote:

…this Yale link is running rampant in all of the MM [multiple myeloma] and MGUS [monoclonal gammopathy of undetermined significance] Facebook groups, over and over again….people see the Yale link as a credible and reliable resource which gives “merit” to this article and how they presented (spun) it, so they are just soaking it up.

Thompson said he has contacted the YaleNews news release author and asked her to correct the news release, which also claims, incorrectly, that the Yale researchers “have identified what causes a third of all myelomas.” He said he has yet to hear back from them.

The original manuscript: Clonal Immunoglobulin against Lysolipids in the Origin of Myeloma” by Nair and colleagues may be somewhat confusing to lay or even scientific readers, Thompson noted. “It is an interesting study but does not make the claims noted in the news release.”

We are gathering a growing number of stories about patients being misled and even harmed by inaccurate, imbalanced, incomplete media messages.  Recently we profiled the roller coaster of emotion that a man with glioblastoma went through after hearing misleading news.  Next Monday we plan to bring you another similar story from a rare disease advocacy group.

Addendum on February 15:  Yale has apparently changed the headline of the news release to “Researchers link lipids to one third of myelomas.”  But the original headline still appears on a Google search:

Screen Shot 2016-02-15 at 10.53.51 AM

Kevin Lomangino in the managing editor of HealthNewsReview.org. He tweets as @Klomangino.

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Comments (4)

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Paul F

February 13, 2016 at 2:48 am

This PR person was probably promoting movies or marketing cheese before she got into medicine. It sounds as though it was an act of considerable insensitivity to have written the release, though I accept it was without malice. Like a lot of people, she was probably just trying to please her boss, not realising it was ultimately tarnishing the Yale brand.
The other issue, though, is that we all think we are intelligent enough to self diagnose and analyse, contextualise, interpret, weigh up medical information we find on the Internet and the vast majority of us just aren’t.. I have long since abandoned those myeloma/Mgus Facebook sites but I’ve no doubt they will have been discussing this release as though it were fact, a new dawn, rather than the fairly cheap thing it appears in reality to be.

    Mike Thompson, MD, PHD

    February 13, 2016 at 7:34 am

    @Paul F –
    Actually many patients are often curious as well as critical. However, many of course are not, so trying to promote good journalism is important. In the absence of good journalism, pointing out flagrant errors and hubris is important.

Marc Beishon

February 15, 2016 at 9:43 am

You have to think a press release writer would check the draft release with the study authors. But it seems not. They appear to have at least corrected the headline.

    Mike Thompson, MD, PHD

    February 15, 2016 at 12:42 pm

    I would point out two remaining things – these are for the press release, not the NEJM manuscript.
    1. Lipids – to most lay people means HDL and LDL cholesterol. That is not what this study is about. So many MM patients could (and have) been confused by thinking this relates to statins and cholesterol.
    2. The manuscript had humans and mice. N=3 Gaucher’s disease patients had MGUS (a precursor to MM but not MM). Based on the manuscript reference Gaucher’s disease patients have a 37 fold increased risk of the progression from MGUS->MM, and that may be from what was found in the NEJM mansucript.
    REF: http://www.ncbi.nlm.nih.gov/pubmed/23510066?dopt=Abstract
    However, I don’t understand where you are getting 1/3 of MM patients?
    Where is that calculation made in the NEJM manuscript?

    I think it is much, much less than 1/3 of MM patients, ie 1/3 of MM patients do not have Gaucher’s disease. And Dr. Durie’s blog critique agrees with my assessment (ie, rare).