ME and the perils of internet activism

It’s become a truism of modern-day politics that social media and the online activism it enables have coarsened debate and left politicians vulnerable to campaigns of intimidation. What is less widely known is that the same is said of medical science. Earlier this year Michael Sharpe, a professor of psychological medicine at the University of Oxford, announced that he had withdrawn from research on myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS), because the field had become “too toxic”.

Sharpe says that he has received “thousands of emails calling me every obscenity you can imagine” – largely from ME sufferers or their advocates. But this, he reckons, is not the real problem. What concerns him far more is when activists target the official machinery to undermine a professional reputation.

“I don’t know how many freedom of information requests we’ve had,” he says. “It’s well over 100. There have been three debates in parliament about the Pace trial with one or two MPs using parliamentary privilege to allege that we’re fraudulent scientists. We’ve had investigation by the Health Research Authority. Most of us have been reported to the General Medical Council in an attempt to get our medical licences removed. So you find yourself constantly under investigation for some kind of fraud or semi-criminality or medical misconduct. And that is the problem. You can’t function like that.”

The Pace trial, of which Sharpe was an author, was a landmark 2011 study published in the Lancet that examined the effects of various therapies on people suffering from ME/CFS. The trial became the subject of controversy for several reasons. One is that it looked at ways of dealing with the symptoms of an illness rather than exploring a cure for a disease. Another is that it suggested there might be a psychological component to the manner in which sufferers experience the illness. And then finally, question marks were raised over the trial’s methodology.

There are a number of conditions, including ME/CFS, that 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 cause. And as a result, many of these conditions have sufferers who have become embittered by what they perceive as the failure of the medical establishment to take their chronic illnesses seriously.

In a 2001 survey of 400 GPs, 64% thought patients with MUS had psychiatric illnesses and 84% thought they had personality problems. It’s in that context that there is a heightened sensitivity to claims about the efficacy of psychological treatments. The Pace trial found that there were significant improvements in the wellbeing of patients who underwent either cognitive behavioural therapy (CBT) or graded exercise treatment (GET). The questioning of the legitimacy of the trial was immediate.

Sharpe first became interested in the relationship between ME/CFS and psychological therapies in the late 1980s when he ran a psychiatry and psychology service at the John Radcliffe hospital in Oxford. An infectious disease doctor kept telling him that his clinic was full of chronically fatigued patients whom he was unable to help. Symptoms vary in the condition but in many cases sufferers report total exhaustion and an inability to move, let alone exercise. Sharpe says he decided to try some CBT treatments, which proved “remarkably helpful”.

In 1996, he published his first trial in the British Medical Journal and his head of department received a letter saying the research was flawed. “Luckily, in those days the head of department just looked at the data, said it all seemed fine and told me to carry on.”

By 2011, and the publication of the Pace trial, Sharpe’s opponents were a lot more organised. “Social media had become more prominent,” he says. “A lot of this had been people in their bedrooms writing in green ink up until then.”

But what really made the difference, he says, is that “the Americans got involved”.

The United States has a very different system of healthcare, which is largely private and insurance-based. That means the validity of diagnosis, what will and will not be accepted by insurance firms, is critical. If you suffer from an unrecognised condition, there’s a very good chance you won’t be able to receive any treatment. It’s a harsh environment, fraught with lawsuits, that has bred a tough kind of activist. One of these is a man called David Tuller, a former HIV campaigner, who has become something of a hero to the ME/CFS community in the UK. He takes a highly detailed approach to medical papers, closely reading them to uncover any inconsistencies or potential flaws. He publishes his findings on a well-read blog called Virology.

It’s a development, says Sharpe, that has moved the conflict on to a “whole other level”. Such blogs and forums, he says, have become “a coordinating centre for actions against people getting the ‘wrong answers’”.

Tuller has called the Pace trial a “piece of crap” and says that his goal is to “completely discredit” it. He describes researchers who conduct psychological tests for treatment of ME/CFS as “insane”, and he was instrumental in persuading the respected science journal Cochrane Database of Systematic Reviews to withdraw a paper that looked at eight randomised controlled studies of exercise therapy for ME/CFS. Sharpe says that the Cochrane editor “wilted badly… under direct pressure” from activists. The editor has since retired, and Sharpe understands that his decision is to be reversed.

Over 20 years ago, the New England Journal of Medicine ran an editorial on increasingly aggressive campaigns against medical researchers, warning that “with widening media coverage of health research, and expanding research on the outcomes of clinical care, such attacks may become more frequent and acrimonious”.

The journal may have been on to something. Sharpe points out that despite all the complaints that have been made against Pace, both the Medical Research Council and the Lancet stand by the study and its findings. He maintains that there was nothing untoward or biased about the trial.

“We got a fairly clear answer, but it wasn’t an answer that people wanted to hear. One of the patient organisations had actually co-sponsored the trial, and when they saw the answer they then dropped it because it wasn’t the right answer. So part of the essence of this is that there is a right and a wrong answer, which is very different to the way we work. We just start with questions and test hypotheses. But these people are coming from a different perspective. And unfortunately we keep getting the wrong answers.”

Charles Shepherd is a GP and medical adviser to the ME Association. He, along with many ME campaigners, insists that the Pace statistics were massaged and that in fact the results show no significant difference between CBT and GET and the other options in the trial.

He dismisses the notion of an abusive campaign as a story that has been overplayed in the media and which concerns “a tiny, tiny, tiny number of people sending emails to one of the handful of researchers in one particular area of research”.

“There are 250,000 people with this illness,” he says. “A lot of them feel very cross and angry about the way they have been treated by doctors. I mean, the numbers were probably 10 or 20 people who were accused of sending harassing or abusive emails.”

ME-like symptoms were noticed as far back as the 1930s, but it wasn’t until an outbreak in the 50s at the Royal Free hospital in north London that it earned the title of “benign myalgic encephalomyelitis”. In the 80s, the “benign” was dropped, but before that, a psychiatric review of major ME outbreaks concluded that they were psychological in nature. At around the same time, the condition became known as chronic fatigue syndrome.

Shepherd believes this was a “dreadful” mistake. As he has written: “The term CFS trivialised a serious medical condition – the equivalent of trivialising dementia by calling it a chronic forgetfulness syndrome – and shifted the focus from a ‘disease’ to a single symptom, ‘chronic fatigue’.”

Shepherd says that Pace endorsed the belief that there is “no disease process going on, no disease causing these symptoms”.

Sharpe counters that nowhere in his writing has he ever argued that there is no underlying disease, only that, given the disease has not been identified, the most effective current treatment has to be directed at the symptoms. “I have always said that, like all chronic illnesses, there is a percentage of the variance that’s caused by how people cope with it, how they think about it, how they behave. It’s probably a larger part of variance than we think. There’s some interesting studies in heart disease saying that how impaired people are has very little to do with the functioning of the heart and an awful lot to do with how they respond to the symptoms of heart disease.”

He believes ME/CFS activists are absolutely set against “any implication whatsoever that there could be any aspect to their illness which isn’t rooted in biological disease. Any little hint that it couldn’t be, becomes [the] equivalent of saying it’s not real, it’s imagined, you’ve made it up.”

Shepherd rejects this characterisation, and argues that much more biomedical research needs to be done.

“The bottom line is here: we need parity with other conditions which are affecting this number of people and causing this level of ill health and disability. Take, for example, multiple sclerosis, which has 100,000 people, but has around about 10 to 20 times the amount of research funding coming into it.”

He says attitudes are changing, with the Medical Research Council setting up an expert council, of which he is a part, to look at research into the illness. He recommended neurology and immunology as promising areas. But he says that the number of applications for research in those areas has been “disappointing”.

One reason is that, by and large, neurologists themselves don’t share Shepherd’s belief that the answer might lie in their field of expertise. Indeed, they continue to resist the World Health Organisation classification of ME/CFS as a neurological disease.

“Neurologists are a rather strange breed of medics,” says Shepherd. “Unless they can see hard neurological signs and symptoms and actual pathological abnormalities that explain things, they tend to be rather sceptical about conditions being described as neurological.”

It’s notable that Shepherd would like to see greater scepticism regarding the claimed benefits of psychological treatments, of which there is abundant – if disputed – documented evidence, but less scepticism about there being a neurological cause, for which the evidence has been scant.

He says that this shortfall is changing: there is “growing evidence of a range of neurological abnormalities”, and there are neurologists who are “coming round to the idea that this is what we call a neuro-immuno disease”.

But as things stand, there is no recognised breakthrough in biomedical research with regard to ME/CFS. And in its absence, many sufferers 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 condition. The arguments and counterarguments are complex and multifaceted. Sharpe says that as each challenge is refuted, the activists move on to a new issue. To follow their arguments, he says, is to “disappear down a rabbit hole”.

At the moment there is such ill feeling on both sides that the fundamental process of improving health – the cooperation between patients and practitioners – has been damaged. Exactly how that will be fixed in a way that satisfies both medical science and sufferers of ME/CFS is a problem that has yet to be resolved.