ME and the dangers of Internet activism | Society

IIt has become a truism of modern politics that social media and the online activism they allow have diluted the debate and left vulnerable politicians vulnerable to intimidation. What is less known is the same thing in medical science. Earlier this year Michael Sharpe, professor of psychological medicine at the University of Oxford, announced that he had retired from research on myalgic encephalomyelitis (EM), also known as Chronic Fatigue Syndrome (CFS) because the field had become "too toxic".

Sharpe said he received "thousands of e-mails calling me out of all the obscenities you can imagine," largely from people with EM or their lawyers. But that, he believes, is not the real problem. What worries him a lot more is that the militants are attacking the official machine to undermine their professional reputation.

"I do not know how many requests for freedom of information we have received," he says. "It's well over 100. Three debates took place in Parliament about the Pace lawsuit. One or two members used parliamentary privilege to pretend we are fraudulent scientists. We conducted a survey on behalf of the Health Research Authority. Most of us have been reported to the General Medical Council for the purpose of obtaining the withdrawal of our medical license. You are therefore constantly under investigation for fraud, semi-criminality or medical misconduct. And that's the problem. You can not work like that. "

The Pace essay, of which Sharpe was an author, was a landmark study from 2011 published in the Lancet who examined the effects of various therapies on people with EM / CFS. The lawsuit was controversial for several reasons. The first is that he has looked at ways to treat the symptoms of a disease rather than seeking a cure for it. Another is that it suggests that there might be a psychological element in the way patients suffer from the disease. And finally, question marks were raised about the methodology of the trial.

A number of conditions, including EM and CFS, fall into the frustrating category of medically unexplained symptoms (MUS). Others include fibromyalgia and multiple chemical sensitivity. What they all share, to varying degrees, is a scientific uncertainty about the cause. As a result, many of these conditions have patients who have become embittered by what they perceive as the inability of the medical facility to take their chronic diseases seriously.

In a survey of 400 general practitioners in 2001, 64% thought that patients with MUS had a psychiatric illness and 84% thought they had personality problems. It is in this context that there is increased sensitivity to claims about the effectiveness of psychological treatments. The Pace trial showed that the well-being of patients undergoing cognitive-behavioral therapy (CBT) or progressive exercise therapy (GET) had been significantly improved. The challenge to the legitimacy of the trial was immediate.

Sharpe first became interested in the relationship between EM / CFS and psychological therapies in the late 1980s, when he was head of a psychiatry and psychology department at the University of Toronto. John Radcliffe Hospital in Oxford. A doctor specializing in infectious diseases told him that his clinic was full of chronically tired patients that he was unable to help. The symptoms vary from case to case, but in many cases, sufferers report complete exhaustion and an inability to move, not to mention exercise. Sharpe said he decided to try some CBT treatments, which proved "remarkably useful".

In 1996, he published his first trial at British Medical Journal and his department head received a letter stating that the research was wrong. "Fortunately, at that time, the head of the department was only reviewing the data, said everything seemed to be going well and asked me to continue.

In 2011 and after the publication of the Pace trial, Sharpe's opponents were much more organized. "Social media has become more important," he says. "Many people in their rooms had written so far in green ink."

But what really made the difference, he says, is that "Americans have been involved."

The United States has a very different health care system, mainly private and insurance based. This means that the validity of the diagnosis, which will and will not be accepted by the insurance companies, is essential. If you have an unrecognized illness, chances are you will not be able to receive treatment. It is a difficult environment, with many lawsuits, that has created a strong type of activist. One of them is a man named David Tuller, a former HIV activist, who has become a hero for the ME / CFS community in the UK. He takes a very detailed approach to medical papers by reading them carefully to discover inconsistencies or potential flaws. He publishes his findings on a well-known blog called Virology.

"It's a development," said Sharpe, "which has propelled the conflict to" another level ". Such blogs and forums, he says, have become "a coordinating center for actions against people getting the" wrong answers "".

Tuller called the Pace trial "shit" and says his goal is to "discredit him completely". He describes the researchers who perform psychological tests for the treatment of ME / CFS as "foolish", and he played a key role in persuading the respected science journal. Cochrane Database of Systematic Reviews to withdraw an article on eight randomized controlled trials of exercise therapy for ME / CFS. Sharpe says the Cochrane editor "strongly faded … under direct pressure" activists. The editor has since retired and Sharpe understands that his decision must be rescinded.

More than 20 years ago, the New England Journal of Medicine published an editorial on the increasingly aggressive campaigns against medical researchers, warning that "with the expansion of media coverage of health research and the development of research on the results of clinical care, such attacks could become more frequent and more acrimonious. "

The newspaper may have been devoted to something. Sharpe stresses that, despite all the complaints filed against Pace, the Medical Research Council and the Lancet to stand at the study and its results. He argues that the trial was not unwelcome or biased.

"We had a pretty clear answer, but it was not an answer that people wanted to hear. One of the patient organizations actually co-sponsored the trial, and when she saw the answer she dropped it because it was not the right answer. So, part of the essence of this is that there is a good and a bad answer, which is very different from the way we work. We simply start with questions and test hypotheses. But these people come from a different perspective. And unfortunately, we continue to have bad answers.

Charles Shepherd is a general practitioner and medical advisor to the ME association. With many ME activists, he insists that Pace statistics have been massaged and that in reality, the results show no significant difference between CBT and GET and other testing options. .

He rejects the idea of ​​an abusive campaign as a much-publicized story that concerns "a tiny number of people sending emails to one of the few researchers in a particular area of ​​research."

"There are 250,000 people with this disease," he says. "Many of them are very angry and irritated by the way they have been treated by doctors. I mean, the numbers were probably 10 or 20 people accused of sending harassing or abusive emails. "

EM-like symptoms were seen as early as the 1930s, but it was not until an epidemic in the 1950s at the Royal Free Hospital in North London that she became known as myalgic encephalomyelitis. benign. In the 1980s, the "benign" was abandoned, but before that, a psychiatric examination of the large outbreaks of ME had concluded that they were psychological in nature. At about the same time, the disease became known as chronic fatigue syndrome.

Shepherd thinks it was a "terrible" mistake. As he wrote, "The term CFS trivializes a serious illness – the equivalent of trivializing dementia by calling it chronic forgetfulness syndrome – and shifts the focus of a" disease "to a single symptom. , "chronic fatigue."

Shepherd says that Pace subscribed to the belief that there was "no current pathological process, no disease causing these symptoms".

Sharpe says that nowhere in his writings has he ever argued that there was no underlying disease, but only, since the disease had not been identified, the most effective current treatment should be directed against the symptoms. "I have always said that, as with all chronic diseases, there is a percentage of the variance caused by how people deal with it, how they think about it, how they behave. This is probably a bigger part of the variance than we think. There are some interesting studies on heart disease that indicate that impaired health has very little to do with how the heart works and how much it responds to the symptoms of heart disease. "

He believes ME / CFS activists are absolutely opposed to "any involvement of any kind, any aspect of their disease that is not rooted in a biological disease. Any small clue that it could not be, becomes [the] is to say that it's not real, it's imagined, you've invented everything. "

Shepherd rejects this characterization and argues that much more biomedical research is needed.

"The bottom line is there: we need parity with other conditions that affect this number of people and cause this level of poor health and disability. Take, for example, multiple sclerosis, which has 100,000 people, but whose funding for research is about 10 to 20 times greater. "

He says that mentalities are changing, with the establishment by the Medical Research Council of a council of experts, of which it is a part, to review research on the disease. He recommended neurology and immunology as promising areas. But he says that the number of research applications in these areas has been "disappointing".

One of the reasons is that, overall, the neurologists themselves do not share Shepherd's belief that the answer could come from their area of ​​expertise. Indeed, they continue to resist the classification of EM / CFS by the World Health Organization as a neurological disease.

"Neurologists are a rather strange breed of doctors," says Shepherd. "Unless they can see the hard neurological signs and symptoms and the actual pathological abnormalities that explain things, they tend to be rather skeptical about conditions described as neurological."

It should be noted that Shepherd would like to see greater skepticism regarding the purported benefits of psychological treatments, for which there is ample documented evidence, albeit disputed, but less skepticism about the existence of a cause. for which evidence has been scarce.

He says that this shortfall is changing: there is "growing evidence of a range of neurological abnormalities," and there are neurologists who "are beginning to think that Is what we call a neuro-immune disease. "

But as things stand, there is no recognized breakthrough in biomedical research in ME / CFS. And in his absence, many patients continue to feel neglected and misunderstood. At the same time, some researchers believe that they have been unjustly targeted for attempting to alleviate the symptoms of the disease. Arguments and counterarguments are complex and multifaceted. Sharpe says that every challenge being refuted, activists move on to a new problem. Following their arguments, he says, is "disappearing into a rabbit hole".

At present, both parties are so uncomfortable that the fundamental process of improving health – cooperation between patients and practitioners – has been damaged. The exact way in which this will be regulated in order to satisfy both medical science and people suffering from EM / CFS is a problem that has not yet been solved.