It is unfortunate to see such an unbalanced presentation of such an important issue. It is certainly true that researchers of all kinds now face public discontent with their conclusions on social media, and it's true that this is problematic for the objectivity of science. It is not possible to address this problem, however, without an objective, balanced view of the situation.
First, the best-known instance of researcher harassment involves ME/CFS “activists” and researchers connected with the PACE trial (1). In a highly publicized case, a UK Court concluded that “the assessment of activist behaviour” on the part of researchers was, “grossly exaggerated” (2). We must acknowledge this finding as evidence that the perception of harassment is sometimes overblown.
Second, a balanced perspective would have to recognize that when legal validation of harassment failed, researchers pursued a sustained campaign of mainstream media support for their perspective. Media professionals were enlisted (3, 4, 5) to secure public acceptance of the harassment narrative and the scientific perspective that led to public resistance. When media is aggressively employed to promote science, particularly over the objections of the public, we are in dangerous scientific territory.
Third, it is not possible to understand the phenomenon of patient anger about ME/CFS care and research without considering the possibility that it arises from disease left untreated with longstanding recommendations for psychiatric management. In the US, the National Institutes of Health, the Centers for Disease Control, the Association for Healthcare Research and Quality and the National Academy of Sciences now agree that it is a medical error to construe ME/CFS as a psychiatric condition because patients in fact suffer from a poorly understood biological disease. The UK seems to have reached the same conclusion (6).
Dr. Brean is correct that the problem of antagonism between researchers and the public must be addressed. It will not be possible to accomplish that, however, unless we begin with a balanced view of the problem.
1. White P, Goldsmith K, Johnson A … Sharpe M. PACE trial management group. Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): A randomised trial. Lancet 2011; 377(9768): 823–36.
2. Tribunals Judiciary. Queen Mary University of London v Information Commissioner,
First‐Tier Tribunal Appeal Number EA/2015/0269, 2016. https://informationrights.decisions.tribunals.gov.uk/DBFiles/Decision/i1...(12-8-16).PDF. Read 4.10.2021.
3. Kelland K. Online activists are silencing us, scientists say. Reuters, 13 March 2019. https://www.reuters.com/investigates/special-report/science-socialmedia/. Read 4.10.2021.
4. Smyth C. Trolls force Oxford expert to stop research on ME. The Times, 16 March 2019. https://www.thetimes.co.uk/article/trolls-force-oxford-expert-to-stop-re.... Read 4.10.2021.
5. Andrews A. ME and the perils of internet activism. The Guardian, 28 July 2019. https://www.theguardian.com/society/2019/jul/28/me-perils-internet-activ.... Read 4.10.2021.
6. National Institute for Health and Clinical Excellence. NICE draft guidance addresses the continuing debate about the best approach to the diagnosis and management of ME/CFS, 2020.
https://www.nice.org.uk/news/article/nice-draft-guidance-addresses-the-c.... Read 4.10.2021.