From the Daily Telegraph, 24 September 2012 (words by Max Pemberton).
The findings of a study into the role of viruses in ME will not be acceptable to some sufferers
Sometimes the most important scientific findings are not those that prove something, but those that disprove something. This was the case with a study published last week (and reported in the Telegraph) on the role of viruses in ME, the condition characterised by extreme fatigue and muscle pain.
Scientists based at Columbia University in New York found no evidence that sufferers were infected with the viruses XMRV or pMLV, which had previously been isolated in tissue samples taken from ME suffers and were thought to have a role in the condition.
Researchers found compelling evidence that detection of the viruses was as a result of contamination, thus corroborating two previous studies that had reached the same conclusion. The theory that XMRV or pMLV were factors in ME was dismissed ”once and for all’’, according to the study.
This will no doubt come as a blow to those ME sufferers determined to prove that their ill health is a result of a biological agent. But despite this being such an important study, it wasn’t widely reported by British media. I suspect I know why.
Last summer I wrote a column here about ME, after researchers had revealed the systematic abuse they had received from a group of ME protesters, who objected to the scientists’ suggestion that there might be a psychological component to the condition. The scientists, including highly respected clinicians, told how they had been subject to intimidation and even death threats. I suggested that perhaps the reason the protesters felt so strongly was because of the way society views mental illness, and the implication that it is not a real form of illness. I thought this was quite a reasonable observation. Nothing could have prepared me for what happened next.
Within an hour of the article going online, I began to receive messages on Twitter. Within a few hours, I’d received several hundred. Within a few days, it was into the thousands. I was inundated with emails and letters, furious that I had backed the scientists who’d argued that a psychological component might play a role in ME. Those who targeted me displayed an astounding degree of paranoia and obsession, twisting anything I said, or any attempts to pacify them. I soon gave up bothering. For a group of people with such apparent low levels of energy, they seemed to have an incredible amount to waste on me. Some wrote to my agent and my publisher. The article was even referred to the Press Complaints Commission (which rejected all the complaints and vindicated the article). Others found contact details for the person who runs my website, for my partner and for several of my friends. They targeted journalists who voiced support for me.
Some personal threats were made and I had to get lawyers involved. I had received emails from people with ME thanking me for my piece, but they explained they dare not speak out for fear of retribution. What on earth was going on?
Then, the puzzlement changed to concern. It was brought to my attention that people had been discussing, via the internet, where I lived. My home is easily identifiable. Photographs of it had been posted online. The police became involved, and visited my flat to assess how secure it was. My telephone number and address were placed on a ”high-alert’’ rapid response list.
It is clear that the people who targeted me in such a reprehensible way represent a very small minority of ME sufferers. As I analysed the messages on Twitter, it became apparent that there were, perhaps, 200 individuals repeatedly sending me those vile messages and emails. A proportion of them didn’t even live in the UK.
Eventually, the frenzy began to die down. It coincided with appeals from some in the ME community not to harass me as they believed such extreme behaviour undermined their argument.
Since then, medical journalists have told me that few of them would choose to tackle a story about ME because of the abuse it attracts. Media doctors I consulted agreed it was the one subject that they avoided at all costs. This chimes with the researchers’ original point: that the minority of militant sufferers are doing the majority a tremendous disservice by scaring off doctors and scientists from working in the area.
The daft thing is that I actually have a deep sympathy for sufferers of ME. I’m very interested in the subject and have followed the medical literature on it for years. I think the difficulties such patients face in accessing services and state assistance is scandalous. I’d happily champion their cause, but after my experience I really don’t want to get involved. I have put my head above the parapet once more because I think it’s important that readers know what happens to those who try to discuss ME, and why the press are often reluctant to cover stories about it.
The other thing is that the experience confirmed my original theory about the fears and prejudice surrounding mental illness. Those who denounced my column told me (often in capital letters) that they weren’t making up their symptoms, that they were physical, so how could it be psychological? And therein lies the rub: that mental illness is seen as being ”made up’’ or somehow inferior to physical illness.
These ME sufferers pointed out that brain scans have shown possible neurological changes as evidence that their illness wasn’t psychological, completely failing to understand that such scans show significant changes in every psychiatric disease, too. This is the root of the problem – that we, as a society, still labour under the Cartesian legacy of the mind-body split, and that only physical illness is real. Meanwhile, because of a vocal, vexatious minority, the suffering of those with ME will continue to go largely unreported.