Category: Stereotyping

When contextualizing its report on transphobic death threats received by an Armenian activist, The Guardian somehow forgets to mention religion

Lilit Martirosyan’s speech in the Armenian parliament has gone viral.

Addressing a panel on human rights, Martirosyan described the plight of the trans community in Armenia. She explained how her own experience of threats and violence reflect the challenges that she and other trans people face in the country:

I encompass in myself — tortured, raped, kidnapped, subjected to physical violence, burned, immolated, knifed, subjected to murder attempt, killed, emigrated, robbed, subjected to stigma and discrimination in social, medical, legal, economic areas and in every aspect of a dignified life, unemployed, poor, and morally abandoned — the Armenian Transgender’s image.

While Armenia has passed legislation to decriminalize homosexuality, there are no laws to prohibit discrimination against LGBT persons. The government disqualifies LGBT people from joining the military. Same-sex couples are not allowed to marry, or to adopt.

ILGA, a globally renowned NGO, ranks Armenia 48th out of 49 European countries for LGBT rights. In the ‘Hate Crime & Hate Speech’ category, Armenia finishes (joint) bottom of the pile, with a score of zero percent. The past year has seen a surge in violent anti-LGBT attacks in the country.

Therefore, perhaps it was no surprise when Martirosyan’s truly historic and brave speech sparked an immediate backlash from Armenian conservatives. It started even before she left the podium. Panel chair, Naira Zohrabyan, decried Martirosyan’s speech for having (allegedly) deviated from the official debate schedule and ordered her to leave the chamber, shouting “You have violated the agenda!” at her as she walked away. Some of the MPs applauded this verdict, shouting “Bravo, Ms Zohrabyan!

Pic: YouTube

The Guardian reported on the death threats today:

The speech, two weeks ago, has since sparked a backlash in Armenia, where homosexuality has been decriminalised but discrimination against LGBTI people is rife. There have been anti-LGBTI protests in front of the national assembly and verbal attacks made by some parliamentarians have included calls for her to be burned alive…

Martirosyan said the home addresses of several people who work for Right Side, the transgender rights organisation she created in 2016, have been leaked and that her own home address has been spread across the internet by extremist groups who have threatened to “kill them if we find them”. Nationalists, she said, have gathered outside her house, raising Armenian flags…

And so on, and so on.

Pic: Aysor.am

Strangely, across its 760-word report, The Guardian entirely avoids pointing out why these Armenian protesters want LGBT persons to be “burned alive” so much that there are pickets outside parliament and — more disturbingly — attempted lynchings in rural Armenian villages.

They fail to even refer to the fact that the protests are spearheaded by Armenian church figures and clerics, and that much of the inflammatory language used in the protests is infused with religious diatribes.

The leader of the Prosperous Armenia party, Gagik Tsarukyan, invoked “Armenian traditions and faith” to declare Martirosyan’s address a “vice,” adding that “we must hide the vice as it was before.”

Protesters were led to parliament by religious groups and individual clerics, who called for a “ban on sexual minorities” at the legislative level. The clerics included Ghazar Petrosyan, a priest who once berated the Armenian president for being a “friend” of Elton John, on the basis that “nothing can alleviate the sin of being gay.

One of their schticks was to declare that Martirosyan’s speech had “desecrated” the parliamentary podium, and that the chamber needed now to be cleansed. They brought incense, which they said was needed in order to “sanctify” the podium at which Martirosyan had stood. The protesters were told that this would set off the fire alarm in parliament, so they offered to bless the podium with holy water instead. Some of the religious groups even brought a new podium to replace the one that Martirosyan had tainted.

In Armenia, religious attacks on the LGBT community go right to the top. Last year, the supreme leader of the Armenian Church decried “the phenomenon of homosexuality” as “unacceptable to the way of human nature” and, literally, “a threat to our nation’s survival.”

The fact that The Guardian can report on these protests without even mentioning their religious underpinnings — in a country such as Armenia, where church-led conservatism has long been a source of concern — is, frankly, nothing less than bizarre.

The obvious question to raise is: would The Guardian have mentioned religion had these protests taken place in a Muslim country?

Well, when The Guardian reports on transphobia and homophobia in places like Brunei, Saudi Arabia, Indonesia, Malaysia, and Iran, for example, it seems to me that they are quite quick to refer to sharia law, clerics, and other religious frames of reference by way of context. The fact they avoid doing so when describing Christian protests in Armenia certainly stands out.

I note that the Guardian’s Armenia report is “supported by the Bill & Melinda Gates Foundation.”

I wonder does this mean that certain terms and conditions apply?

Maybe not, but it’s worth remembering all the same that, even in The Guardian, paid-for content is exactly what it says it is.

Paid for.

If you spend 20 years gaslighting your patients, perhaps you should think twice before accusing *them* of trolling *you*

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 anti-Semitic, 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:

A group of people who were definitely *not* trolling anybody.
(Pic: Adapted from @BenMcNevis via Twitter)

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.

Photo by Pixabay on Pexels.com

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…).

Pro-tip: Next time, try PubMed.
(Photo by rawpixel.com on Pexels.com)

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.)

Photo by Pixabay on Pexels.com

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.

The Triumph of Eminence-Based Medicine

Lines are drawn

A quarter of a million Britons have been diagnosed with myalgic encephalomyelitis (ME), the condition also known as chronic fatigue syndrome (CFS). ME/CFS is a severe debilitating illness that renders patients either temporarily or perennially immobile. Sufferers will have often led very active lives before being struck down. After onset, they are forced to give up work or education. Many patients become bedridden for decades. People with ME/CFS experience a full syndrome’s worth of symptoms, dominated by ‘crashes’ of extreme unrelievable tiredness (formally referred to as ‘post-exertional malaise’), along with muscle weakness, digestive problems, pain, and hypersensitivity to light or sound.

The World Health Organisation classified ME/CFS as a neurological disease as far back as 1969. Since then, extensive research has shown that ME/CFS involves disruption of several bodily systems, including the nervous, immune, endocrine, cardiovascular, and gastrointestinal systems. Recent studies have revealed extensive cell-functioning impairment arising from irregularities in patients’ DNA.

Despite all the signs that ME/CFS is an organic disease, the precise biomechanics — and therefore, the most appropriate biomedical treatments — are still unclear. Some patients seem to do well with rintatolimod, an immunostimulant, but not enough to suggest it as a universal therapy.

But if you don’t have ME/CFS or know someone who has, chances are you’ve heard of it anyway. Most likely you will know that the condition is controversial. This is because, well, it is. From diagnostics to treatment to research, the world of ME/CFS is mired in never-ending acrimony. Some researchers claim to have been threatened with violence. A number have won humanitarian awards for standing up for their clinical views. Doctors defending medicine — from patients.

healthy clinic doctor health

Photo by Pixabay on Pexels.com

“All in the mind”

A recurring problem relates to how some doctors perceive the nature of ME/CFS, and the treatment decisions that flow from their assumptions. In Britain especially, the dominant clinical view is that ME/CFS is effectively a psychogenic disorder — one that is caused, or at least exacerbated, by patients’ thoughts, attitudes, and beliefs — and not a truly organic illness that involves irregular body chemistry, treatable using pharmacological or surgical intervention.

In other words, in Britain the ME/CFS world is dominated by psychologists, psychiatrists, and behavioural practitioners. Accordingly, the National Institute of Clinical Excellence (NICE) have adopted guidelines stating that ME/CFS should be treated using either cognitive behaviour therapy (CBT), graded exercise therapy (GET), or a combination of the two.

For years, patients have complained that these treatments are of no use. GET is especially disliked. For most people with ME/CFS, exercise leads to extreme pain and debilitation. The very thought of more physical activity is abhorrent. The fact that doctors prescribe exercise as therapy, and dismiss patients as malingerers when they refuse to comply, is endlessly horrifying. In the minds of some, it is little short of cruel and inhumane abuse.

Many UK clinicians are dogged in their defence of what has become known as the biopsychosocial model of ME/CFS. This is despite the physiological science that suggests they are wrong. Such is the root of the controversy: these doctors are sticking to their guns no matter what scientists — or patients — have to say.

British clinicians, you see, have done their own research, duly published in the best medical journals. They say their findings justify the use of CBT and GET — and nothing else — to treat ME/CFS. Unfortunately, their research serves to compound the controversy, rather than to calm it. The very fact these medics refuse to budge in the face of criticism makes the whole situation worse. The atmosphere has become truly toxic. Patients are haughtily dismissed as aggressive and unreasonable know-nothings.

It’s no wonder they are angry.

Keeping PACE

One of the biggest ever psychology studies to be conducted in a healthcare setting in Britain was the PACE Trial, a five-year investigation involving more than six hundred patients that set out to test the effectiveness of CBT and GET as treatments for ME/CFS. Since its inception in 2005, the PACE Trial has been plagued by problems, ranging from disputed diagnostics, to legal proceedings, to claims of dodgy data. In truth, the study’s a right mess.

Despite being extremely well resourced — and its main results appearing in The Lancet, no less — the PACE Trial contained a number of highly odd design features. For example, it relied heavily on self-report measures, but did not employ blinding. Any psychology undergraduate will tell you that self-report studies need to be blinded. Therefore — by design — the PACE Trial stands as a textbook example of bad research. (Literally, this year, it has appeared as such in a textbook.)

As a result of this flaw, we know that the PACE Trial findings must be untrustworthy. This is even before we see any data. The research was holed below the waterline from the very beginning.

white and black desk calculator on white graphing paper

Photo by Pixabay on Pexels.com

As it happens, the data make for gruesome viewing. The biggest defects relate to outcome-switching. After the PACE Trial investigators began their research — presumably, once they crunched some numbers — they decided to change their definition of “recovery”. They did this by reducing the threshold of (self-reported) physical fitness required for patients to be deemed “well”. In short, they moved the goalposts.

This allowed them to report that one-in-five patients were classified as “recovered” when treated with CBT or GET, a lot more than would have been the case had they stuck to the original study protocol. The problem is that they forgot to do anything about the threshold they set for patients to be declared “sick” in the first place. Hilariously (in the ‘gallows humour’ sense), the result of their on-the-hoof adjustments was that their new threshold for “recovery” was now below the threshold for “sickness”.

Patients could be classified as “recovered” even if their scores for physical well-being declined. Somewhere in the region of one-in-eight patients fell into this surreal category. These patients were sick enough to take part. Their conditions deteriorated after therapy. But the investigators still presented their trajectories as evidence that the PACE Trial treatments had worked.

A lay person would be forgiven for calling this method “absurd”.

To say that the PACE Trial is an extremely weak study is to understate an obvious calamity. Such has been the resulting criticism from around the world that last year the Journal of Health Psychology was able to set aside an entire issue just to publish peer-reviewed articles tearing the PACE Trial to smithereens.

Picture1

In Psychology in Crisis, I use the PACE Trial as an archetypal example of bad psychological science. It is truly emblematic of the chaos currently engulfing psychology. In recent years paranoia about psychology’s poor replication record has become endemic. Studies like PACE make psychology seem a truly dubious endeavour, and worsen the field’s already dodgy reputation. For scientifically-minded psychologists, it is the stuff of nightmares.

But the PACE Trial is not just a case study in flawed research design and iffy methods. It also highlights the way professional politics can intrude on the scientific process. It shows us how professional groups sometimes try to face down objective criticism, look the other way when ineptitude is exposed, and doggedly stick to their guns in order to avoid threatening their own interests.

These days we have a term to describe how repeated mantra-like talking-points can be employed to suppress legitimate and objective rebuttals. We call it “post-truth” argumentation. Such gamesmanship is not confined to traditional politics. Psychologists can do “post-truth” too.

The world of clinical disease management, especially that of ME/CFS, is just as likely to become embroiled in a culture war.

Wagons being circled

Last month, Reuters published an exclusive story reporting how an influential Cochrane review, which had originally concluded that GET is an effective treatment for ME/CFS, is now to be “temporarily withdrawn” in light of “feedback” received regarding its methods and analysis. The review, published in 2017, had attracted scathing criticisms for what were identified as serious methodological flaws.

For example:

  • The sample of studies included was highly selective
  • Positive outcomes were exaggerated
  • An overall lack of significant treatment effects was either overlooked or misreported
  • Studies relying on self-report measures, which are usually considered weak in research terms, were analysed as though they were just as strong as studies that used objective measures
  • The reviewers decided to shift their analytic approach after they had started their work (in psychology, we might refer to this as “a pattern of behaviour”). Their adjustments ultimately enabled them to report maximum effects for GET. Deviating from pre-planned protocols is a huge risk to the validity of any review, and is contrary to Cochrane good practice guidelines.

Many observers also pointed out that the review’s authors included investigators involved in the now beleaguered PACE Trial, meaning that they were effectively involved in a process of marking their own homework.

These criticisms, along with many others, were formally submitted to Cochrane and are currently viewable on their website.

In explaining Cochrane’s decision, Reuters highlighted pressure from patient activists who object to ME/CFS being depicted as a psychological condition. Discernible in the Reuters report was the sound of professional wagons being circled. A former head of Britain’s Medical Research Council was quoted as complaining that withdrawal decisions should not be dictated by patient lobbying.

This week, the Guardian posted a ‘science’ podcast discussing the Cochrane review withdrawal. In the blurb, they perpetuated the (inaccurate) Reuters reporting line, embellishing it with their own reference to “verbal abuse”:

…researchers looking at efficacy of these therapies claim they are verbally abused. But now, it may have gone a step further. Reuters recently reported that ‘a respected science journal is to withdraw a much-cited review of evidence on an illness known as chronic fatigue syndrome amid fierce criticism and pressure from activists and patients.’

More strikingly — perhaps even suspiciously — the producers of the Guardian science podcast decided that this week’s guest should be none other than a colleague of one of the authors of the withdrawn Cochrane review, and — for good measure — himself an author of the maligned PACE trial. Not just marking his own homework anymore, but now — in defiance of expert criticism — defending how well it had been marked.

In post-truth terms, it all felt a bit like an episode of Fox & Friends.

Cochrane doesn’t withdraw reviews lightly. In reality, this review was withdrawn from the public record because for nearly two years independent researchers had highlighted a steady stream of specific scientific criticisms. The Editor in Chief of Cochrane stated clearly that “this is not about patient pressure.”

In other words, the methodological problems proved to be just too glaring. Someone who headed the Medical Research Council should really be able to see that, as should the producers of the Guardian’s science podcast.

Perhaps they are the ones who are succumbing to partisan pressures.

two person doing hand shake

Photo by rawpixel.com on Pexels.com

Friends of friends

It is worrying that review practices intended to be scientifically objective seem so susceptible to distortion by social network effects, cultural etiquette, and a prerogative to preserve colleagues’ professional reputations.

The hegemony of the cognitive approach to ME/CFS is clearly partisan. It is at variance with much of the scientific literature. The very fact that its status is disputed exposes as logically unwise any claim that there is only one side to the ME/CFS story.  Its endurance results from professional politics, not scrupulous science.

It is eminence-based, rather than evidence-based, medicine.

It is also very much a British thing. The corresponding American authority — the National Academy of Medicine — has declared ME/CFS an organic condition requiring biomedical treatment. Its genetic and neurochemical signs are well recognised (although its precise physiology is not yet established), as are the damaging effects of exercise therapies of the kind promoted as standard in the UK. It is the British clinical professions whose establishments believe that ME/CFS is psychogenic, that its main dynamics are “all in the mind”.

Medical conditions are not supposed to vary by international border. An infection contracted in one country should be expressed the same anywhere, and biomedical treatments should have a uniform effect regardless of what nation you live in. That the UK is an outlier when it comes to ME/CFS simply makes no sense.

Except possibly in one respect. We should not see ME/CFS as resulting from mass cognitive hysteria among a quarter of a million UK citizens. Rather, we could see the biopsychosocial theory of ME/CFS as a grand sanctimonious delusion shared by a professional clique who, for circumstantial reasons, find themselves dominant in British behavioural healthcare.

The echo chamber in which reviewers review each other’s work, award each other’s grants, and line up as one other’s acolytes, suggests that little of this will change any time soon.

Bad science is bad enough when it is just science. In the case of ME/CFS, where flawed research materially damages the lives of hundreds of thousands of blameless people, it is nothing short of a scandal, about which the establishment should feel acute embarrassment and, ideally, shame.

* * *

 

Edited, 3/11/18: Description of podcast rephrased to clarify that its guest was a colleague of one of the Cochrane review authors, as well as an author of PACE trial 

%d bloggers like this: