Hookworms on intestines. Credit: CDC
This story ran as part of a series entitled “Worm Week.” The headline poses the question: “Could Worms in Your Gut Cure Your Allergies?” Or for that matter, could they cure other autoimmune diseases such as asthma, ulcerative colitis and Crohn’s disease?
We have problems with headlines like this one and offer tips on how they can be improved.
The story states that “the worms do something amazing: They suppress the immune system.” And it explains that based on this, there’s a hypothesis that the worms also might work for specific autoimmune diseases.
But then we learn, actually no, they don’t seem to work based on disappointing clinical evidence. So, what about that hypothesis, then? The story doesn’t return to that, instead it just implies that there was something wrong with the research, not the hypothesis. And it never tells us some important facts about using worms in this way, such as that they’re illegal to use therapeutically in the U.S., and that if they are used, they carry very serious risks.
This left us wondering: What was the point of the story? As it’s written, the confusing hypothesis vs evidence set-up is more bewildering than informative, and readers are left in the dark on some important realities of using a risky, unproven treatment.
Growing rates of allergies and autoimmune diseases — disorders in which the immune system attacks its own body — have popularized the notion that our historic exposure to dirt and unsanitary conditions in childhood primed the immune system to protect against inflammatory diseases. Parasitic infections have emerged as a possible explanation for the low rate of these diseases in less developed countries. It’s hypothesized that worms might treat such chronic and incurable conditions as Crohn’s disease, ulcerative colitis, multiple sclerosis, and asthma by inhibiting the body’s immune response, though there’s no solid evidence that parasites are safe and effective.
While the details of this story may creep out many people, a lack of effective treatments for autoimmune conditions and severe allergies may lead some patients to try anything, including ingesting worm eggs obtained in an unregulated market, to gain relief. The downsides of this must be thoroughly reported in news coverage, and the headlines must not veer into clickbait.
Costs aren’t mentioned. Parasites can costs thousands of dollars for a year’s supply, and worms must be replenished because they tend to die off. Since this is a non-approved and non-proven therapy, all costs would likely be out of pocket.
There don’t appear to be quantifiable benefits associated with this treatment because it hasn’t been well studied in humans, and we are told this much: “The controlled trials, thus far, in a variety of different diseases including childhood allergies and asthma have not been positive.” Also, the patient interviewed experienced a negative result. With no proof of benefit and plenty of risks to ingesting parasitic worms, we’re left to wonder why this story emerged and was run on NPR with a headline that hinted there was potential for this treatment.
The story says one person found that having worms in his body “wasn’t pleasant,” and he experienced diarrhea and cramps. But potential risks are not adequately addressed. According to a story in The New York Times Magazine, for example, severe whipworm infection can result in anemia, clubbed fingers and stunted growth in children.
The story could have done a better job of spelling out that better quality research is needed on the safety and efficacy of using parasites to fight autoimmune disease. It mentions trials using worms for Crohn’s disease, childhood allergies and asthma that “haven’t gone so well” and says it’s “unclear why the worms haven’t worked in these trials.”
Yet, before this, the story states intestinal worms “do something amazing” by suppressing the immune system and keeping it from “getting out of control and attacking the body,” assertions that are attributed to a researcher. Only later does the story mention that this is part of a hypothesis, a point that needed far more emphasis, especially since the trial evidence so far doesn’t indicate anything amazing.
For the most part, the story heavily leans on the personal experience of writer Moises Velasquez-Manoff, who wrote a recent article published in The New York Times Magazine about an underground network of patients who are self-treating with parasites. In the NPR story, Velasquez-Manoff describes temporary relief from his own hay fever and alopecia, which causes hair loss, after he ingested hookworm larvae obtained in Mexico. He tried the worms after talking to many people who gave parasites “rave reviews.” Indeed, some people say parasites relieve their symptoms. But that’s not clinical evidence.
The conditions listed are all real disorders, so the story doesn’t disease monger. However, we did want to point out that some of the conditions listed have effective treatments, yet it was implied that they are untreatable.
The story uses several sources with various points of view, and we couldn’t find any outright conflicts of interest.
The story does not mention how parasites compare to existing treatments for autoimmune diseases in terms of safety, efficacy or cost.
The story mentions that one person obtained worms in Mexico. Otherwise, there’s no information about their availability. In fact, selling worms for therapeutic use is illegal in the U.S.–this should have been mentioned.
The story establishes novelty by letting us know that studies go back a few years, so it’s not a new concept.
There’s no evidence that the story relied on a news release.
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
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