Online activists silence us, say scientists

(Adds David Tuller's academic post to Berkeley)

By Kate Kelland

LONDON, March 13 (Reuters) – The e-mails, tweets and blog posts in the "abuse" file that Michael Sharpe keeps on his computer continue to pile up. 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, it's 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 they were the target of online harassment because activists 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, and its strength is to provide people with a diversity of views on critical issues – all in real time." When someone used anonymity for malicious purposes, Twitter would take immediate action, added the spokesman.

Chronic fatigue syndrome, also called myalgic encephalomyelitis or SFC / ME, is described by specialists as a "complex, multisystemic and often devastating disorder". Symptoms include overwhelming fatigue, joint pain, headaches, sleep problems 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 spoken therapies and behavioral approaches may be useful in some cases. Some patients and their advocates say 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, senior research scientist in public health and journalism at the Center for Global Public Health at the University of California at Berkeley, is one of the main leaders of the campaign against psychological therapy research for CFS / ME. Tuller, a former journalist with a doctorate in public health from Berkeley, describes himself as an investigator and not an activist. He 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 blog posts representing tens of thousands of words attacking studies on psychological treatments and the conferences that 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 CFS / ME treatments, instead focusing on helping patients with critically ill 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 over the last ten years, the number of ongoing treatment trials of SFC / ME has decreased. From 2010 to 2014, 33 trials of this type began. Between 2015 and today, this figure has dropped to around 20. This decline comes at a time when research on ways to help patients should grow, 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 Research Clinic for Functional Disorders at the Aarhus University Hospital in Denmark, said he persisted because he did not want to let patients down, 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 always been described as "yuppie flu" or simple laziness.

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 "criminal harassment on the Internet". 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 dangerous and perverse individual" and another saying, "We are dying, b."

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

Per Fink, from the Aarhus University Hospital, echoes his experiences. He runs a clinic that provides patients with exercises and speech therapies.

Fink said the organizers of the conference at which he took part in Columbia University in New York in October 2018 had been pursued by complaints and protests from CFS / ME activists. 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 say that they will not go into this area of ​​therapy because it's so difficult."

SUPERCHARGE OF SOCIAL MEDIA

The idea that critics or activists defy researchers and seek to hold science accountable 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 SCF / ME research, it is often personal. Those in the middle of the situation say that the situation has become uncontrollable.

"Its toxicity permeates everything," Sharpe told Reuters.

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

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 Starting at a very low daily activity and then gradually increasing 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 earned $ 87,500 in crowdfunding online to "deny" the findings of the PACE trial. He refers to the study as "a piece of shit" and "garbage" and says he's determined to see him discredited. During lectures filmed and broadcast on YouTube, he tore copies of the study to show his feelings about it. Tuller has also published a report of 15,000 words.

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 which supporters send him gifts and praise for his SCF / ME campaign. Tuller himself has neither conducted nor published peer-reviewed clinical trials on chronic fatigue syndrome / medication. He co-wrote a review of PACE.

His argument is that the therapies evaluated in the PACE trial are based on an erroneous assumption that patients with CFS / ME suffer from a "useless" belief that they have a biological disease and that their symptoms of fatigue are aggravated by deconditioning due to inactivity. He also says that he thinks the trial methodology 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 fine," he said about the SCF / ME researchers he's targeting. "They should not be on the ground, they should not do research at all."

Tuller denies that his election campaign is 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 confines of the academic world." When asked about his motivation, he replied in the affirmative. He said he had a long-time friend who had been diagnosed with CFS / ME in the early 1990s, but had "no other personal interest". He said his work helps patients by "eliminating bad science to make way for good science", such as research on the biological basis of the disease.

Another campaign, which bears the acronym MAIMES, or Medical Abuse in ME Sufferers, was launched in Britain. It contains 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.

The activist and doctor behind MAIMES, Sarah Myhill, has 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 a form of abuse because these people," CFS / ME patients, "do not have the energy to defend themselves." Myhill has published several books advocating what she calls a "naturopathic" approach to treating the symptoms of CFS / ME – one using an appropriate combination of nutrition, rest and medication. 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 said that he was "not able to identify the problems that would require us to open an investigation" about 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.

The head of the CDC's chronic viral diseases branch, Elizabeth Unger, told Reuters that this had been done to remove jargon and medical terms that were not well understood 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.

Unger said the CDC's advice emphasizes that the needs of each patient with CFS / ME are different. "For some, careful management of exercises and activities can be helpful," she said. "Similarly, some patients may find that talking to a therapist helps them."

In Britain, the government guidelines on the treatment of CFS / ME published by the National Institute for Health and Wellness Excellence (NICE) currently recommend cognitive behavioral therapy and treatment. exercise noted. But these are also under review, and should be reviewed and republished by 2020. A source close to NICE told Reuters that the agency had been subject to "a lot of lobbying" in order to lead him to review his guidelines "and in particular to change his recommendations around exercise therapy and cognitive-behavioral therapy." The source refused to explain in detail who was behind the lobbying .

Publishers also feel the heat. In a move described by the researchers involved as "disproportionate and unjustified", Cochrane Reviews published in October that they would temporarily withdraw an analysis analyzing the results of eight studies of exercise therapy. patients with CFS / ME.

Cochrane reviews evaluate the best science on a given subject and are considered a reference in the scientific literature. The review in question, led by a Norwegian research team and published by Cochrane in April 2017, found moderate-quality evidence showing that "exercise therapy has a positive effect on physical functioning." daily, sleep and self-assessment of overall health. "

In October e-mails, Tuller told Reuters that he considered the Cochrane Review to be "biased" and claimed that its authors had accepted "illusions that these studies (the ones they have examined) represent good science ". After hearing the news of the magazine's temporary withdrawal, Tuller stated that he had had a "long meeting" with the Cochrane editors in Britain last summer and that he the "had pressed with all their weight". "The others too," he says.

Cochrane's editor, David Tovey, confirmed that he had met Tuller but said the meeting had nothing to do with his decision to temporarily remove the exam. He stated that the patients 'and activists' complaints about the examination had raised "important questions" about how the review had been conducted and had reported that he and his fellow editors felt that that it had to be remedied.

Lillebeth Larun, a scientist at the Norwegian Institute of Public Health who led the Cochrane Review, is one of many scientists who strongly disapproved of Tovey's decision to withdraw it. For her, the move is a sign that activists who have tormented her for years have now taken her publishers. During the decade she conducted research in this area, she told Reuters, she was the victim of online attacks and abusive emails and had to pause because of the pressure . Returning to a CFS / ME project would give him the feeling of suffering from anxiety.

"Attempts to limit, undermine or manipulate evidence-based results, to force or intimidate researchers to rely on a given conclusion will ultimately have a negative effect," she said. Reuters. "This will only push researchers to choose to work in other areas and reduce the resources devoted to providing the help that patients desperately need."

Some patients with CFS / ME disagree. Reuters has contacted the Twitter user who identifies as Paul Watton to ask him about his online attacks. Speaking on the phone, Watton said that he was sick with CFS / ME and unable to work in his former work as a builder for 15 years and that he felt neglected by the medical facility. Reuters could not check his account independently.

"I totally agree with David Tuller," Watton told Reuters. "It is a chronic disease for which there is currently no cure."

In Britain, there are at least 50 specialized chronic fatigue syndrome services that treat approximately 8,000 adults each year, in line with government guidelines, by offering behavioral and psychological therapies. A study published in July 2017 showed that about one-third of adults affected by the disease who attended these specialized clinics reported a substantial improvement in their health. During the survey, more than 1,000 patients were asked about fatigue, physical function, general function, mood, pain, and sleep problems before and after obtaining services.

Colin Barton, president of CFS / ME of Sussex and Kent – a group of patients from southern England – said that speech therapies and progressive exercise had helped him to recover to such an extent that he could lead an almost normal life. He told Reuters that, according to his experience, patients who say they have been helped by psychological therapies or progressive physical exercises are being abused, like the researchers. They face accusations that they have never been sick; that their condition was misdiagnosed; and so their recovery is wrong, he said. As a result, he said, many recovering CFC / ME patients feel compelled to withdraw from the debate. (Kate Kelland report, edited by Janet McBride and John Blanton)

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