Distinguishing Social Activism and Healthy Scientific Debate
Lessons from chronic fatigue syndrome, myalgic encephalomyelitis, and diabetes.
Posted October 25, 2019 | Reviewed by Kaja Perina
In “The Dark Side of Social Media Activism in Science” (Psychology Today, July 22, 2019), I describe how social activism can discourage—or even punish—scientific inquiry by harassing scientists conducting controversial research or publishing controversial findings. This broad issue was described using intervention research on Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) as an example. This also happens in research on Autism Spectrum Disorders (e.g., vaccinations and autism).
I am truly honored that so many people took the time to read this article and that some posted comments. I was deeply touched by the personal narratives of those with CFS/ME.
A review of these comments demonstrates the importance of distinguishing social activism from the normal process of scientific inquiry—which includes healthy—and oftentimes impassioned, but nonetheless legitimate—debate regarding the results, conclusions, and interpretations of published studies. As a clinical-translational scientist studying Autism, Down Syndrome, and other developmental profiles, I can honestly say that we (scientists) welcome and enjoy discussion and debate regarding our work—even (and perhaps especially) from those who are skeptical and critical of our findings and conclusions. This is a fundamental—and necessary—aspect of science and discovery and helps us improve the quality of our research.
The Nobel Prize-winning physicist Richard Feynman wrote: “We have found it of paramount importance that in order to progress, we must recognize our ignorance and leave room for doubt. Scientific knowledge is a body of statements of varying degrees of certainty—some most unsure, some nearly sure, but none absolutely certain.” More broadly, discovery proceeds along this path; initial studies usually provide interesting results (and interpretations) but less certainty than subsequent studies on the same topic (or intervention) that have been refined in response to scientific criticism.
In my own research conducted in collaboration with Professor Paul Yoder and other colleagues, we published a preliminary study on a speech treatment for Down Syndrome that showed promising results, but also revealed much uncertainty as to whom it helps and whom it does not. Reviews of this paper rightfully characterized our evidence for the new treatment as “weak.” We subsequently conducted and published the results of a larger study that was informed by the scientific criticism of the original study with results that are much more certain (but certainly not absolutely certain!).
I am not in any way an expert on Chronic Fatigue Syndrome/Myalgic Encephalomyelitis, and thus am in no position to either endorse or condemn PACE or any other treatments for CFS/ME. However, it is clear that many of the comments regarding exercise and counseling research highlighted subsequent scientific reviews critiquing the methods and/or the conclusions of the authors of the PACE trial. This is a wholesome and welcome scientific debate.
In the process of “normal science,” as in our work on speech in Down Syndrome, scientists conduct additional studies in order to refine the intervention(s) and address the critiques from the scientific (and consumer) community, with modifications arising from precisely this kind of legitimate argumentation and critique.
This is altogether different from mounting a social “doxing” campaign and other forms of social activism to discredit a legitimate area of scientific inquiry in order to bully or harass researchers into abandoning their work. Gaining a better understanding of the utility (or lack thereof) of exercise and counseling as potential tools for supporting people with CFS/ME is a legitimate area of scientific inquiry—and scientific debate.
In the end, these exercises and counseling “ingredients” may prove to be universally ineffective. But, it is also possible that new findings will help clinicians treating CFS/ME to know which patients are most likely to benefit—and which are unlikely to. Given the severity of CFS/ME, and the preliminary findings from PACE and other studies, one could argue that this potentially important research line should not be shut down using harassment rather than data and that additional study is needed.
The discovery of the causes of and treatments for diabetes provides useful insights into how variable (uncertain) response to intervention can lead to more effective treatments and shed light on the underlying causes of the disease. Broadly, there are two main types of diabetes: One form (Type 1) is caused by the destruction of the insulin-producing cells in the pancreas, and the other (Type 2) is caused by resistance to the effects of insulin so that sugar remains in the blood rather than being transported into the cells. The second type was discovered when scientists found that some patients being treated with insulin failed to respond (hence the term “insulin resistance” to refer to these patients). This discovery then led to new research to understand why some patients were not responding to treatment (insulin) that is effective in some diabetics and subsequently to the development of effective treatments for this “insulin-resistant” group.
Interestingly and perhaps relevant to the PACE debate, validated treatment components for Type 2 diabetes now include exercise and counseling—and no one thinks that this means that diabetes is a psychosomatic condition without physiologic origins. I would also point out here that people with Type 1 diabetes—including me—require insulin injections to live: Restricting treatment to exercise and counseling would certainly be fatal for us, even though many Type 2 diabetics can see improvements in—or even complete remission of—their diabetes when treated with exercise and counseling.
Thank goodness the scientists studying the causes and testing treatments for Type 2 diabetes were not bullied by social activists into abandoning their research on the potential benefits—and limits—of exercise and counseling as a potential intervention for diabetes!
I wholeheartedly endorse—and add my voice to—those calling for a refined study of exercise and counseling for CFS/ME, and I strongly encourage continued scientific debate and research on this topic. I also unequivocally call for the immediate cessation of social activism aimed at curtailing this potentially useful line of inquiry. All stakeholders, including people with CFS/ME, clinicians, and scientists, should be working together to find more effective treatments.
 FEYNMAN, R. (1988). What do you care what other people think (No. 530.0924 F438w Ej. 1). BANTAM NEW AGE BOOKS.
 Camarata, S., Yoder, P., & Camarata, M. (2006). Simultaneous treatment of grammatical and speech-comprehensibility deficits in children with Down syndrome. Down Syndrome Research and Practice, 11(1), 9-17.
 Yoder, P. J., Camarata, S., & Woynaroski, T. (2016). Treating speech comprehensibility in students with Down syndrome. Journal of Speech, Language, and Hearing Research, 59(3), 446-459.