The Dark Side of Social Media Activism in Science

A spinoff of recent advances in technology—social media activism—is having an impact on science in society. On the one hand, the rise of social media has been a real boon, helping to ensure that the discoveries that clinical-translational researchers make become widely known so that doctors and their patients quickly have access to the most up-to-date scientific information.

On the other hand, the rise of social media and “antiscience” activism, via email, twitter, and other outlets, has created new and daunting challenges when naysayers use these platforms to target research—and researchers—with whom they disagree. Scientists laboring to discover and objectively evaluate new treatments have been criticized, “doxed,” and sometimes even openly harassed when their findings do not align with some activists’ views.

As an example, a recent article published by Reuters news service[1] chronicles activist efforts to discredit clinical studies indicating that behavioral interventions (e.g., exercise) can be beneficial to patients suffering from chronic fatigue syndrome-myalgic encephalomyelitis (CFS/ME). CFS-ME is estimated to affect more than 2.5 million people in America and more than 17 million worldwide. These patients often suffer debilitating pain and fatigue that reduce the ability to work, or prevent it altogether, along with participating in simple daily activities. These symptoms can persist for years and there is currently no known cause or cure, so there is a critical need for research.

Michael Sharpe is a professor of Psychological Medicine at Oxford University who “published results of a clinical trial that found some patients with chronic fatigue syndrome [CFS/ME] can get a little better with the right talking and exercise therapies[2].” According to Reuters News, Sharpe has been "subjected to almost daily, often anonymous, intimidation” via email and social media by people who disagree with these findings.

From my point of view, treatments that pass the rigors of evidence-based research and peer review should be welcomed with open arms and with gratitude. Sharpe’s research provides hope, and evidently, real benefits to some patients suffering from CFS/ME. And he reported that the effects were small and that not everyone benefited from the treatment.

So why are Sharpe and other clinical-translation researchers seeking to discover treatments to reduce the debilitating symptoms of CFS/ME being harassed and bullied? The leaders of the movement aimed at Sharpe claim that studying the effects of “psychological” approaches to CFS/ME, such as cognitive behavior therapy, behavioral interventions, and exercise, imply that CFS/ME is psychosomatic and therefore not a "real" medical condition. They also argue that psychological approaches to treatment blame the patient and deflect discovery efforts away from the true biomedical/neurological cause(s) of CFS/ME[3].

Both of these premises are misguided and reflect a fundamental misunderstanding of how clinical translation research is conducted—and how beneficial treatments can be developed even when a biomedical “cause” has not yet been discovered. Indeed, the search for effective treatments can often lead to the discovery of causal mechanisms.

I recently interviewed a chronic fatigue patient who also happens to be a prominent family physician in his community. When asked whether studies showing that cognitive-behavior therapy and exercise can be effective treatments for CFS/ME means it is “all in his head” and not a “real medical condition,” he scoffed and replied that there are many well-accepted medical diagnoses wherein the precise mechanisms in the brain are unknown. He also reported that the symptoms of his own CFS were much improved with exercise, and so he had directly benefited from Sharpe’s research.

The causes of autism, like CFS/ME, are not currently known. But this doesn’t prevent clinical-translational researchers from seeking more effective behavioral interventions for autism. My own research focuses on developing treatments to help people with autism communicate more effectively, but this doesn’t mean that I believe the symptoms of autism are psychosomatic.

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Moreover, literally hundreds of studies show that behavioral treatments are highly effective for autism, but my impression is that the scientists conducting this research all hypothesize that there are as yet undiscovered neurological and genetic causes for autism. I certainly hypothesize this to be true. Ongoing behavioral research in no way hinders scientific efforts to discover the neurological and genetic causes of autism, and there is no doubt that these behavioral interventions improve the lives of people with autism.

Indeed, even after the neurological and genetic causes of autism are more fully understood, behavioral interventions such as helping children with ASD learn to talk, will in all likelihood continue to be an essential treatment approach.

Should clinical treatment research be held in abeyance until a cause is known for a condition such as autism or CFS/ME? Dr. Langdon Down first described what would come to be known as “Down Syndrome” in 1866[4], but the cause, trisomy 21, wasn’t uncovered until nearly a century later, in 1959[5]. In the meantime, important discoveries on many aspects of Down Syndrome were made, including behavioral treatment methods that dramatically improved learning and health for people with Down Syndrome.

Would the early researchers making these important discoveries be harassed in today’s social media milieu because behavior treatments and exercise programs for people with Down Syndrome somehow detract from efforts to discover the syndrome's biological cause? There is no way of knowing with certainty, but the same logic applied to harassing CFS/ME researchers could readily have been applied to Down Syndrome researchers.

The social activism “war” being waged against CFS/ME researchers is founded on false premises. Nonetheless, it is having dire consequences. Talented scientists such as Sharpe may shift the focus of their research when the harassment becomes intolerable. Tragically, Sharpe himself no longer studies CFS/ME, instead working with another group adversely impacted by fatigue—critically ill cancer patients.

The efforts to discredit CFS/ME research findings using social activism rather than scientific methods have led to a significant decline in the number of clinical studies being conducted to discover more effective treatments. Perhaps even more chilling is the report that young investigators, who often bring innovative new approaches to research, are choosing not to study CFS/ME, deciding it is not worth the risk of harassment[6].

This misguided use of social media activism has, in essence, backfired: The end product of the antiscience harassment movement is less hope for patients with CFS/ME because scientists conducting honest and open research are targeted when their results do not align with activists’ beliefs.

Worse, from a broader “science in society” perspective, the weaponization of social media may come to derail the open exchange of ideas, and findings, and thereby curtail honest and unbiased research into not only CFS/ME, but other conditions, such as autism, for which the actual cause is unknown, but there is nonetheless a pressing need to develop more effective treatments. These patients need compassion and hope based on science that is unfettered by the misguided use of social media to harass clinician-scholars working fairly and objectively.