This week we learned that online activists are silencing scientists in the UK:
Reuters contacted a dozen professors, doctors and researchers with experience of analysing or testing potential treatments for chronic fatigue syndrome. All said they had been the target of online harassment because activists objected to their findings. Only two had definite plans to continue researching treatments…
The idea of critics or activists challenging researchers and seeking to hold science to account isn’t new. Most researchers say they are happy to engage in discussion. But with social media, email and 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’s often personal. Those at the centre of it say it’s gotten out of control.
The good news is that these poor put-upon scientists are not going down alone. They have defenders. For example, rushing to their aid on the pages of The Times was none other than that paragon of fact-checking, Mr Rod Liddle:
Yep. That Rod Liddle.
Far be it from me to say anything bad about Mr Liddle. I will leave it to Wikipedia to explain how his various writings have been described as racist, homophobic, transphobic, ablist, misogynistic, Islamophobic and antisemitic, and regularly just hurtful to whatever vulnerable minority or target group he chooses in the moment. I know, Wikipedia might be wrong. Bad Wikipedia.
Nonetheless, we can certainly say that Mr Liddle is very much on the side of the silenced scientists. I won’t quote him directly. Instead, I will direct you to Frances Ryan’s eloquent riposte over at The Guardian, where she identifies the vilification of myalgic encephalomyelitis/chronic fatigue syndrome patients as just yet another form of 21st-century hate speech.
But won’t somebody please think of those poor scientists?
* * *
Who are they, exactly? Well, here’s an old group photo that contains some of them:
Yep, there they are, attending a meeting on “Malingering and Illness Deception” way back in 2001 (and yes, I edited the image to blur their faces and remove their names, as a courtesy).
For 20 years, they have promoted a psychogenic model of ME/CFS. Their theory dismisses sufferers as psychiatric patients whose condition is all in the mind, rather than persons debilitated by authentic physical illness or disease.
But those terms though. “Malingering“? “Illness Deception“? Seriously? Even if the psychogenic theory were true, such labels are not very nice ways to describe patients. You might even consider them, well, abusive.
As it happens, the psychogenic theory is in fact highly unlikely to be true. The theory is defended by an ever dwindling (predominantly British) cohort of professionally interconnected psychomedical practitioners, and stands in increasing contrast to, say, the scientifically informed positions listed by the ME International Consensus Panel, the US National Academy of of Medicine and Centers for Disease Control and Prevention, and the World Health Organization.
As I have written about before (here, here, here, here, and here), ME/CFS is a chronic, inflammatory, physically and neurologically disabling and likely immune-mediated disease, involving disruption and dysfunction of multiple bodily systems.
That is, unless you are in the UK’s crazy ME/CFS psycho-vortex. In that topsy-turvy place, ME/CFS is an example of “malingering” or “illness deception”. Basically, the disease is just an opinion. An idea the patient dreamed up in their free time. After all, patients have so much free time — you would too, if you were restricted to lying in your bed, unable to move, for several decades.
* * *
Note that the “Malingering and Illness Deception” conference pre-dated, by several years, the much beleaguered PACE Trial, which is so often held up as providing key evidence to support the use of psychosocial therapies for ME/CFS. According to Reuters,
…[the PACE trial] sought to evaluate the effectiveness of different types of therapy in CFS/ME patients…the results found that cognitive behavioural therapy – designed to help patients change their thinking and behaviour – and graded exercise therapy – in which patients are encouraged to start from very low levels of daily activity and then incrementally raise them – are safe and moderately effective treatments for some people.
It is striking how the Reuters reporter so readily accepts that the PACE Trial simply “found” what it said it found, just because the authors said so in the original research report. In reality, the PACE Trial has been described as flawed by several high-profile authoritative reviews, and is extensively described as such in subsequent scientific and medical literature (although not, it seems, extensively enough for the Reuters reporter to find it using, I don’t know, maybe the internet? Perhaps their broadband was down that day…).
It is notable that most of the high-profile figures who promote the PACE Trial held their views long before the PACE Trial was ever conducted. They wrote papers about their views, authored books about their views, designed therapies based on their views, developed psychometric instruments drawing on their views, and — yes — organised conferences among themselves in order to discuss their views. These views are core to their professional identities. For many, these views are the only reason they have professional identities.
Rather than providing evidence to support a new understanding of ME/CFS, the PACE Trial was conducted long after the investigators’ conclusions were formed. PACE was not the source from which insights were sprung. It was practically the last act in the play. And according to one of its authors, the PACE Trial pretty much amounts to the very last thing he will have to do with ME/CFS:
[He] no longer conducts research into CFS/ME treatments, focusing instead on helping severely ill cancer patients. “It’s just too toxic,” he explained. Of more than 20 leading research groups who were publishing treatment studies in high-quality journals 10 years ago, [he] said, only one or two continue to do so.
(Of course, an alternative view could be that research prospects are drying up because the field of psychogenic treatments for ME/CFS is scientifically unsustainable. The model is proving to be anachronistic; it is increasingly hard to get research funding for the stuff.)
* * *
It is absolutely true that much of the discourse surrounding ME/CFS is deeply fraught and highly contentious. There is a lot of anger. There is serious pressure. There is extensive name-calling and criticism that targets individuals. Things can get messy. No doubt about it.
That said, though, we should remember what is going on here.
Namely: patients with serious physical disabilities are being told, by a small coterie of academic health professionals, that their illness is a figment of their imaginations. That’s pretty incendiary. But then they are told that, as a consequence of their “illness deception”, they must be treated effectively as psychiatric cases. They must be given psychological and behavioural therapy, instead of biophysical medicine.
It is quite the double-whammy. Many of these patients are bed-ridden for decades, emaciated and debilitated, unable to study or work or hold down a normal family life. And yet they are told: “We do not believe you are really ill. You are malingering. And precisely because you are malingering, you now will be prevented from receiving proper treatment.“
I don’t know about you, but that pretty much sounds like trolling to me.
These practitioners have basically been gaslighting their patients for twenty years.
All of which makes it just a little pathetic to watch them now leverage their press contacts to publicly complain that they are the ones being insulted by, ugh, mere sick people.
* * *
A final word: We have all been trolled on the internet. I have been trolled on the internet. In fact, just about every time I write about ME/CFS, I get trolled, sometimes on Twitter, sometimes by email. And I can tell you this. The folks who troll me are far from critics of the PACE Trial.
Very far indeed.