Online activists silence us, say scientists

LONDON – The emails, tweets and blog posts in the "abuse" file that Michael Sharpe keeps on his computer continue to accumulate. Eight years after publishing the results of a clinical trial revealing that some patients with chronic fatigue syndrome could improve a little better with the appropriate speech and exercise therapies, the professor's Oxford University is subjected to almost daily intimidation, often anonymous.

A Twitter user who identifies himself as a patient named Paul Watton (@thegodofpleasur) wrote, "I'm really looking forward to his professional disappearance and well-deserved public humiliation." Another, Anton Mayer (@MECFSNews), compared Sharpe's behavior to "That of an abuser."

Sharpe never treated Watton and Mayer for their chronic fatigue syndrome, a misunderstood illness that can cause overwhelming fatigue and pain. They did not meet him either, they told Reuters. They oppose his work, they say, because they think it suggests that their illness is psychological. Sharpe, a professor of psychological medicine, says this is not 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 a dozen researchers in this field around the world who are the focus of a campaign to discredit their work. For many scientists, this is a new standard: from climate change to vaccines, activism and science are fighting online. Social media platforms are overpowering the battle.

Reuters has contacted a dozen professors, doctors and researchers experienced in the analysis or testing of potential treatments for chronic fatigue syndrome. All said that they had been the target of online harassment because activists had objected to their findings. Only two people had well-defined plans to continue treatment research. With nearly 17 million people worldwide suffering from this debilitating disease, scientific research on possible therapies is expected to develop, said the experts, but without diminishing. What worries them the most, he said, is that patients could lose if treatment research fails.

A spokesman for Twitter said the platform "exists to serve the public conversation. His strength is to provide people with a variety of perspectives on critical issues, all in real time. When someone used anonymity for malicious purposes, Twitter would take immediate action, added the spokesman.

Specialists describe chronic fatigue syndrome, also called myalgic encephalomyelitis, as a "complex, multisystemic and often devastating disorder". Symptoms include overwhelming fatigue, joint pain, headaches, difficulty sleeping and isolation. It can make patients bedridden or at home for years. The Centers for Disease Control and Prevention, or CDC, estimate that the disease costs the US economy between $ 17 billion and $ 24 billion a year in medical bills and lost income. It is thought that this will affect up to 2.5 million people in the United States.

No cause has been identified, no formal diagnosis has been established and no treatment has been developed. Many researchers cite evidence that talking therapies and behavioral approaches may be useful in some cases. However, some patients and their advocates claim that this is tantamount to suggesting that the syndrome could be a mental or psychosomatic illness, a notion that makes them furious. They would prefer that research efforts focus on identifying a biological cause or diagnosis.

David Tuller, a former Ph.D. in public health from the University of California at Berkeley, is one of the protagonists of the campaign against psychological therapy research for CFS / ME. Tuller, who describes himself as an investigator and not an activist, told Reuters that he wanted to help patients with CFS / ME.

Funded in crowdfunding by a global group of people with CFS / ME, their families and patient activists, Tuller has published since October 2015 more than 140 tickets representing tens of thousands of words attacking studies on psychological treatments and conferences who presented them. He recently complained to the CDC, Columbia University in New York and Netflix. In 2018, Netflix released a series of documents on patients with CFS / ME. He said he wanted to show the difficulties faced by patients "suffering from elusive or poorly understood diseases".

Tuller refers to researchers who are exploring and testing treatments for CFS / ME that include a "crazy" psychological element and a "cabal" with "mass delirium". They are determined to continue "fictitious and really terrible research," he told Reuters. .

Sharpe no longer conducts research on SCF / ME treatments, but rather on helping patients with severely compromised cancer. "It's too toxic," he explained. According to Sharpe, of more than 20 renowned research groups that published treatment studies in high quality journals 10 years ago, only one or two continue to do so.

Clinicaltrials.gov, the largest trial registry in the world, indicates that there has been a decrease in the number of new SFC / ME treatment trials underway. From 2010 to 2014, 33 trials of this type began. Between 2015 and today, the figure has dropped to around 20. This decline comes at a time when research on how to help patients should grow, but should not decrease as this disease is more widely recognized, said scientists interviewed by Reuters.

Reuters has interviewed three CFS / ME specialists in Britain, Denmark and the Netherlands, who have reported being abused online but who continue to work in the field. The specialist in the Netherlands, a psychologist working in a chronic fatigue treatment center, said that a few years ago, the country's research teams had conducted five studies on cognitive-behavioral therapies for patients with CFS / ME. Now, they have no treatment studies. Novice researchers fear entering the field because of the abuses they have suffered, said the British specialist, a doctor who requested anonymity.

Per Fink, professor at the Functional Disorders Research Clinic at the Danish University Hospital Aarhus, said he was continuing his work because he did not want to let patients, some seriously ill, who are open to any treatment that might help them ".

Uncertainty

The term myalgic encephalomyelitis was first used in 1956 to describe a condition associated with post-disease fatigue in patients at the Royal Free Hospital in London. Thirty years later, the name Chronic Fatigue Syndrome was coined. Now the combined term CFS / ME is used by most people – patients, doctors and researchers – and by the US National Institutes of Health.

The cause of the disease is not known, although it may be secondary to serious illness, extreme physical endurance, or a viral infection such as glandular fever. There is no biomarker or blood test to make the diagnosis, and patients are often misunderstood by family, friends, and doctors. Patient advocates say the disease has long been described as "yuppie flu" or simply indolence.

In the absence of pharmacological or physiological treatments on the horizon, scientists and doctors have explored psychiatry and psychology to find ways to alleviate symptoms. Some patients and activists claim that this has diverted attention and funding from scientific efforts to define the causes of CFS / ME and determine how to diagnose it properly.

Simon Wessely, professor of psychological medicine at King's College London and former president of the Royal College of Psychiatrists of Britain, said he had decided to stop conducting research on the approaches Therapeutics for CFS / ME several years ago because he felt that online abuse was harming his work. with patients.

But he is still the subject of what he calls "endless harassment on the Internet." Among recent tweets directed against Wessely, one accusing him of playing "ego-driven pathetic games" with the lives of people with CFS / ME, another saying "Wessely is a danger and the individual hurts "and another saying" We are dying, b / c of you. "

Wessely's employers at King's College London took advice on potential risks and put X-ray scanners on his mail, he said. "Everything I say and do in public, and sometimes even in private, is scrutinized and examined," he said.

Per Fink from Aarhus University Hospital echoes his experiences. He runs a clinic offering exercise sessions and speech therapies for patients.

Fink said that the organizers of a conference at which he had attended Columbia University in New York in October 2018 had been pursued by complaints and protests from SFC activists. / ME. A petition calling for Fink's disinviction was signed by 10,000 people. Tuller – who in his blog wrote that the person who had invited Per Fink to speak at the conference had to be "misinformed or stupid, or both" – called Fink "scary guy" whose methods had "destroyed families". Tuller urged readers of his blog to go to the Columbia conference and demonstrate.

Describing himself as a doctor and researcher "who's just doing my job trying to help people," Fink told Reuters that his trip to New York was worse than anything he'd ever known before. . "They scare people," he said. "Doctors do not want to talk about it, they try to remain discreet. And many researchers and clinicians said they would not get into this area of ​​therapy, it's so difficult. "

Social media supercharge

The idea that critics or activists defy researchers and seek to hold science to account is not new. Most researchers are happy to participate in the discussion. But with social media, e-mail and the Internet now accessible from almost every home, mass communication gives online activists a voice with unprecedented power. In the field of CFS / ME research, it is often personal. Those in the center of the screen say that it has become out of control.

"Its toxicity permeates everything," Sharpe told Reuters.

The campaign to discredit evidence-based treatment was "a very bad service to people suffering from this disease," said Wessely. "The patients are the losers here."

"Its toxicity permeates everything."

At the heart of the attacks on Sharpe, Wessely and other researchers in chronic fatigue treatment is a study known as the PACE trial, which aimed to evaluate the effectiveness of different types of treatment in patients with CFS / ME.

Published in the medical journal The Lancet in 2011, the results revealed that cognitive-behavioral therapy – designed to help patients change their thinking and behavior – and progressive therapy – in which patients are encouraged to start a very low daily activity, then gradually increase them – are safe and moderately effective treatments for some people.

Richard Horton, editor of The Lancet, said his diary had received e-mails and letters about PACE, but was not planning to withdraw it. He said that what is needed to enable progress in all areas of medical research is "an open and respectful approach by all parties to each other".

Last April, Tuller was awarded $ 87,500 in online crowdfunding to "deny" the PACE findings. He calls the study "shit" and "trash" and says he is determined to see it discredited. During lectures filmed and broadcast on YouTube, he tore copies of the study to show his feelings about it. Tuller also published a 15,000-word review on a Berkeley colleague's website.

Tuller became an activist against AIDS in the 1980s. Now 62, he blogs, sends hundreds of letters and e-mails, and travels around the world delivering speeches and meetings at during which his supporters send him gifts and praise for his SCF / ME campaign. Tuller himself has neither conducted nor published peer-reviewed clinical trials of CFS / ME. He co-wrote a review of PACE.

His argument is that the therapies evaluated in the PACE trial are based on a mistaken assumption that patients with CFS / ME have "unnecessary" belief that they have a life-threatening illness and that their symptoms of fatigue are aggravated by deconditioning due to inactivity. He also says that he thinks that the methodology of the trial was flawed. The scientists involved reject these arguments.

"My goal is to completely discredit the PACE trial," Tuller told Reuters. "And if they left the field of research, that's great," he said of the SCF / ME researchers he is targeting. "They should not be on the ground. They should not do any research at all. "

Tuller denies that his campaign constitutes harassment. In comments to Reuters in an interview and in emails, he said his critics were well-founded. And he added: "I refuse to act within the normal limits of the academic world." When asked about his motivation, he replied that he did not suffer from this disease. He said that he had a long-time friend who had been diagnosed with CFS / ME in the early 1990s, but that he had "no other personal issue". He explained that his work was helping patients by "eliminating bad science to leave," such as research on the biological basis of the disease.

Feel the heat

Another campaign, which bears the acronym MAIMES, or Medical Abuse in ME Sufferers, was launched in Britain. This is a standard letter that people must send to their local MP to request a public inquiry into the PACE trial. There is also a Facebook page titled "Abuse of EM patients by health professionals", which has some 680 subscribers. The page contains stories of anonymous patients who blame Sharpe and others for hurting patients by calling them "lazy" and forcing them to exercise when they can not.

Sarah Myhill, MAIMES activist and activist, posted videos on YouTube that explain her point of view: "I compare this to child abuse," she said in a video watched over 8,000 time. "This equates to some form of abuse, because these people – CFS / ME patients – do not have the energy to defend themselves. ME – an appropriate combination of nutrition, rest and medication is used. She has not published peer-reviewed research on the effectiveness of her approach.

Myhill told Reuters that she had complained to the General Medical Council – the body that keeps the UK's official registry of doctors – about Sharpe and other scientists involved. in the PACE trial, but his complaint was dismissed. Myhill showed Reuters the letter she had received from the General Medical Council. He stated that he was "not able to identify the problems requiring us to open an investigation" to the researchers. Contacted by Reuters, the Council did not specify.

In addition to dissuading researchers from working in the field of SFC / ME, scientists fear that pressure from activists will also begin to emerge in the formulation of guidelines for patients and doctors of national health authorities. In the United States, the CDC has removed references to Cognitive Behavioral Therapy and Progressive Exercise Therapy from its website.

CDC's director of chronic viral diseases, Elizabeth Unger, told Reuters that this was done to eliminate jargon and medical terms that were misunderstood by the public. "We have received reports that the terms are confusing and too often misinterpreted," she said in an e-mail answering the questions.