This story springs from a published paper on 10 case studies of patients who followed a program to reverse memory loss associated with Alzheimer’s disease.
To its credit, the story does note significant limitations with the study and quotes an independent source who casts some cold water on the findings.
But, the story was problematic on several fronts. Most importantly, it contains several errors. For example, it incorrectly states that all 10 patients showed brain scan improvements after following the therapy; in fact just one patient met that benchmark. And it skipped any mention of costs, potential harms, conflicts of interest, or funding sources.
Overall, it follows a tired formula of teasing readers with hopeful statements about a potential cure, only to conclude with the caveat that more study is needed to determine whether the idea will actually work.
No effective medications are available to stop the progress of Alzheimer’s disease, which is expected to affect 13.8 million by the year 2050, barring medical breakthroughs to prevent or cure it, according to the Alzheimer’s Association.
The enormous human and financial toll of this condition could explain interest in this tiny study, which reported “unprecedented” improvement in a handful of patients with mild symptoms who followed an extensive individualized protocol of 36 dietary, sleep, hormonal, exercise-related and other interventions, dubbed “metabolic enhancement for neurodegeneration,” or MEND.
As we stated in our recent review of a news release on the study from the Buck Institute for Research on Aging, there’s evidence that non-drug interventions that are designed to fight inflammation and improve blood sugar regulation like those in the MEND program could be effective. However, the MEND treatment protocol involves so many factors it may be difficult to determine which ones are effective.
The story doesn’t discuss costs. Although the MEND protocol appears to involve many inexpensive interventions, such as reducing processed carbohydrates, practicing yoga, and taking over-the-counter supplements such as melatonin, those expenses aren’t within the reach of millions of Americans. Moreover, the costs of hormones and supplements as well as health coaches to guide patients through the individualized program would be significant. The story also does not mention that the researchers recommend widespread genetic testing to determine risk for Alzheimer’s, which comes at a cost, too.
In its attempt to quantify the benefits, the story wrongly says 10 patients who were experiencing age-related memory decline showed brain scan improvements after following the MEND program for 5 to 24 months. It gives an “example” of one patient whose MRI showed hippocampal volume increase from the 17th to the 75th percentile for his age during 10 months in the program. In fact, just one patient showed improvement in a brain scan, according to the study. Six of the patients demonstrated improvements in memory tests, and three showed only self-reported improvements in cognitive function.
The story does not mention any potential risks of any aspect of the protocol. It does say that MEND “requires the use of supplements which are not well studied and do not require FDA approval.” It does not mention what supplements these are and what risk they might present.
Also, the authors of the study suggest testing for the APOE gene, and that those with a certain gene variance be treated with this protocol. The majority of those with the variance, though, will not get Alzheimer’s, so this is potential overtreatment and exposure to harms for little-to-no benefit. Several of the 10 people in the study did not complete the protocol, and some of that might have been due to adverse effects, but that was not mentioned.
The story does not give readers enough detail to establish the quality of the research method used.
Most importantly, the story should have cautioned readers early in the story that large clinical trials are needed to prove with statistical significance that this approach actually works, and if so, how long results can be maintained.
Instead, the story mentions these important caveats only at the very end, and it left out other downfalls of the research, such as the fact that many of the improvements in this tiny patient group were based on self-reported data, which is subject to bias. There’s also the reality that it would be difficult to perform a rigorous clinical trial on this protocol since it’s reportedly tailored to each patient and involves 36 potential interventions.
The story does tell us that “none of the patients were able to stick to the entire protocol. The significant diet and lifestyle changes, and multiple pills required each day, were the two most common complaints.”
There’s no exaggeration of the seriousness of Alzheimer’s. However, the story should have been more careful in its wording. Calling a cure for Alzheimer’s “the holy grail in disease research” isn’t accurate. There are plenty of horrible illnesses for which cures are being actively sought.
The story does include an independent source, Florida Atlantic University professor James E. Galvin, M.D., M.P.H., who’s quoting saying that personalized approaches are promising, but more study is needed. “Not all things from the (MEND) approach have a lot of scientific support behind them,” he says in the story.
But, the story does not describe funding sources, which include the National Institutes of Health (NIH) and the Accelerate Fund, an early-stage investment fund based in Canada. As we reported in our earlier news release review, lead researcher Bredesen also apparently stands to benefit from sales of a book set to be released in May 2017 through a mainstream book publisher.
The story does not mention alternatives. But many interventions, including drugs, have been tried to reverse memory loss and none have been found to work, so we’ll rate this as N/A.
The story quotes Bredesen saying “his team has a couple of larger trials planned to confirm or refute the results in the current study and to address key questions about how long results can be maintained and how late in the course of cognitive decline reversal is possible.”
But the story could have served readers better if it had pressed Bredesen for specifics about when these trials might occur. The complexity of the protocol, the expense and time involved and questions about insurance coverage all make availability a very key question.
The story does not provide enough context about this intervention’s novelty–besides the one 2014 study mentioned, what else has been tried that uses this approach? We don’t get a sense of where this concept fits into the larger research effort.
Because an independent sources was included, the story does not appear to rely solely on a news release. However, it does cite the news release directly.
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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