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Online activists are silencing us, scientists say

Scientists researching treatments for chronic fatigue syndrome say they face online abuse and harassment.

Kate Kelland, Reuters, Mar 13, 2019

Some are leaving the field. It’s a ‘new normal,’ they say, and patients may lose out.

The emails, tweets and blog posts in the “abuse” folder that Michael Sharpe keeps on his computer continue to pile up. Eight years after he published results of a clinical trial that found some patients with chronic fatigue syndrome can get a little better with the right talking and exercise therapies, the Oxford University professor is subjected to almost daily, often anonymous, intimidation.

A Twitter user who identifies himself as a patient called Paul Watton (@thegodofpleasur) wrote: “I really 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.”

Watton and Mayer have never been treated by Sharpe for their chronic fatigue syndrome, a little-understood condition that can bring crushing tiredness and pain. Nor have they met him, they told Reuters. They object to his work, they said, because they think it suggests their illness is psychological. Sharpe, a professor of psychological medicine, says that isn’t the case. He believes that chronic fatigue syndrome is a biological condition that can be perpetuated by social and psychological factors.

Sharpe is one of around a dozen researchers in this field worldwide who are on the receiving end of a campaign to discredit their work. For many scientists, it’s a new normal: From climate change to vaccines, activism and science are fighting it out online. Social media platforms are supercharging the battle.

Reuters contacted a dozen professors, doctors and researchers with experience of analysing or testing potential treatments for chronic fatigue syndrome. All said they had been the target of online harassment because activists objected to their findings. Only two had definite plans to continue researching treatments. With as many as 17 million people worldwide suffering this disabling illness, scientific research into possible therapies should be growing, these experts said, not dwindling. What concerns them most, they said, is that patients could lose out if treatment research stalls.

A spokesperson for Twitter said the platform “exists to serve the public conversation. Its strength lies in providing people with a diversity of perspectives into critical issues - all in real-time.” Where someone used anonymity for bad purposes, Twitter would take immediate action, the spokesperson added.

Chronic fatigue syndrome, also known as myalgic encephalomyelitis, or CFS/ME, is described by specialists 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 Centers for Disease Control and Prevention, or CDC, estimates the illness costs the U.S. 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. Many researchers cite evidence that talking therapies and behavioural approaches can help in some cases. Yet some patients and their advocates say this amounts to a suggestion that the syndrome might be a mental illness or psychosomatic, a notion that enrages them. They would prefer that research efforts focus on identifying a biological cause or diagnosis.

One of those leading the campaign against research into psychological therapies for CFS/ME is David Tuller, a senior fellow in public health and journalism at the Center for Global Public Health, University of California, Berkeley. Tuller, a former journalist with a doctor of public health degree from Berkeley, describes himself as an investigator, not a campaigner. He told Reuters he wants to help CFS/ME patients.

Crowdfunded by a global band of CFS/ME sufferers, their families and patient activists, Tuller has since October 2015 published more than 140 blog posts amounting to tens of thousands of words attacking studies of psychological treatments and conferences that have showcased them. He’s recently complained to the CDC, New York’s Columbia University and Netflix. In 2018, Netflix ran a docu-series about CFS/ME patients. It said it wanted to show the difficulties of patients “suffering from elusive and misunderstood illnesses.”

Tuller refers to researchers who explore and test treatments for CFS/ME that feature a psychological element as “insane” and a “cabal” suffering from “mass delusion.” They are bent on pursuing “bogus and really terrible research,” he told Reuters.

Sharpe no longer conducts research into CFS/ME treatments, focusing instead on helping severely ill cancer patients. “It's just too toxic,” he explained. Of more than 20 leading research groups who were publishing treatment studies in high-quality journals 10 years ago, Sharpe said, only one or two continue to do so.

The world’s largest trials registry, clinicaltrials.gov, indicates that over the past decade there has been a decline in the number of new CFS/ME 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.

Reuters spoke to three specialists in CFS/ME in Britain, Denmark and the Netherlands who have reported receiving online abuse but continue to work in the field. The specialist in the Netherlands, a psychologist who works at a chronic fatigue treatment centre, said that a few years ago, research teams there had five treatment studies looking at cognitive behavioural therapies for CFS/ME patients. Now, they have no treatment studies at all. Junior researchers are wary of entering the field because of the abuse they’ve seen others suffer, said the specialist in Britain, a doctor who spoke on condition of anonymity.

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.”

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