Reuters discovered that the amount of research being conducted into chronic fatigue syndrome is down because researchers don’t want to deal with the grief due to the online trollage.
Chronic fatigue syndrome is currently being seen as a “complex, multisystem, and often devastating disorder”. Symptoms include overwhelming fatigue, joint pain, headaches, sleep problems and isolation. It can render patients bed- or house-bound for years. The Centres for Disease Control and Prevention, or CDC, estimates the illness costs the US economy $17 billion to $24 billion annually in medical bills and lost incomes. It is thought to affect as many as 2.5 million people in the United States. No cause has been identified, no formal diagnosis established, and no cure developed.
Ironically, online protests are being carried out under the assumption that research assumes that the cause of chronic fatigue syndrome is psychosomatic. The protestors want the medical community to admit that they are physically ill and will accept nothing less than a drug and any other form of treatment is a conspiracy to label them as insane or mentally ill.
The Reuters story said that boffins stopped thinking that years ago although research has found that some CFS patients respond to exercise therapy had a positive effect on people’s daily physical functioning, sleep and self-ratings of overall health.
But the abuse the researchers are getting is nasty. For example, Michael Sharpe, an Oxford professor has a folder of abuse. There is a Twitter user who identifies himself as a patient called Paul Watton (@thegodofpleasur) who wrote: “I am looking forward to his professional demise and his much-deserved public humiliation.” Another, Anton Mayer (@MECFSNews), likened Sharpe’s behaviour to “that of an abuser”.
Sharpe no longer works on CFS and focuses instead on helping severely ill cancer patients. Of more than 20 leading research groups who were publishing treatment studies in high-quality journals ten years ago, Sharpe said, only one or two continue to do so.
The world’s most significant trials registry, clinicaltrials.gov, shows that over the past decade there has been a decline in the number of new CFS treatment trials being launched. From 2010 to 2014, 33 such trials started. From 2015 until the present, the figure dropped to around 20. This decline comes at a time when research into ways to help patients should be growing, not falling because the condition is more widely recognised, scientists, interviewed by Reuters said.
Per Fink, a professor at the Research Clinic for Functional Disorders at Denmark’s Aarhus University Hospital, said he kept going because he didn’t want to let down patients, some severely ill, who are “open to any treatment that may help them”.
Fink said he and the organisers of a conference he addressed at Columbia University in New York in October 2018 were hounded by complaints and protests from CFS activists. A petition calling for Fink to be disinvited was signed by 10,000 people. Tuller – who in his blog wrote that the person who invited Per Fink to speak at the conference must be “uninformed or stupid or both” – called Fink a “scary guy” whose methods had “destroyed families.” Tuller urged readers of his blog to go to the Columbia conference and demonstrate.
As well as dissuading researchers from working in the CFS field, scientists fear that pressure from campaigners has also begun to show in the wording of guidance for patients and doctors from national health authorities. In the United States, the CDC has removed references to cognitive behavioural therapy and graded exercise therapy from its website.
Publisher Cochrane pulled one review, led by a Norwegian research team in April 2017 after pressure from online campaigners. The review had dared to conclude there was moderate quality evidence to show that “exercise therapy had a positive effect”.
Lillebeth Larun, a scientist at the Norwegian Institute of Public Health who led the Cochrane Review, is one of several scientists who vociferously disagreed with Tovey’s decision to withdraw it. For her, the move is a sign that the activists who have plagued her for years have now got to her editors. In the decade or so that she’s been researching in this area, she told Reuters, she’s endured online attacks and abusive emails, and at various points had to take a break from working due to the pressure. Returning to a CFS/ME project would make her feel physically sick with anxiety.
“Attempts to limit, undermine or manipulate evidence-based results, pressure or intimidate researchers into or away from any given conclusions, will ultimately have a negative effect. It will only lead to those researchers choosing to work in other areas and reduce the resources dedicated to providing the help patients so desperately need.”