Author Archives

Brian Hughes

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.

Good news. Psychologists are not going anywhere. Ever

As we all know, the robots are coming. With the singularity all but a certainty (and not in any way pseudoscientific), sooner or later artificial intelligence will develop to become a runaway technological splurge that disrupts and supplants all of what we know today as human civilisation.

Heck, even our most basic human proclivities will be sated by robotic intervention.

The good news, however, is that not everyone will become obsolete. Psychologists, for example (in other words, me and my kind), will be fine. No matter what happens in the future, psychologists are destined to live long and prosper, scuttling away like the cockroaches of academia, offering our uninterrupted insights to ever-eager (perhaps even increasingly hungry) audiences, oblivious to the very collapse of cognitive order and human collective sanity.

While you might be well and truly doomed, we, on the other hand, will be fine.

So, as I say, good news.

I found this out by checking this website called “Will Robots Take My Job?

And, apparently, robots will not be taking my job:

willrobotstakemyjob.com

The people at “Will Robots Take My Job” have established a database drawn from the work of engineers at Oxford University, who statistically modelled the impact of automation on over 700 occupations based on their reliance on social and creative intelligence:

In 2013 Carl Benedikt Frey and Michael A. Osborne published a report titled “The Future of Employment: How susceptible are jobs to computerisation?”. The authors examine how susceptible jobs are to computerisation, by implementing a novel methodology to estimate the probability of computerisation for 702 detailed occupations, using a Gaussian process classifier.

According to their estimates, about 47 percent of total US employment is at risk. Although the report is specific to the US job market, it is easy to see how this might apply all over the world.

We extracted the jobs and the probability of automation from the report and have made it easy to search for your job.

Perhaps paradoxically, the website itself is very user-friendly. Its overall pastel-and-cream UI is just so pleasant, you will virtually enjoy the experience of researching your own obsolescence.

By way of controlling-for-baseline, I ran a check of a few other cognate professions, just to see what kind of margin-of-error the Will-Robots-Take-My-Job people were working with.

JobProbability that a Robot will Take this Job
Psychologists0% (yay!)
Anthropologists1% (ooh!)
Sociologists6% (ha!)
Physicists10% (woah!)
Managers25% (“Automation risk level: Start worrying”)

Overall, seems legit to me. I mean, look at the exactitude of those numbers. Very specific. And the findings are just so convincing. After all, what psychologists do is certainly hard to automate.

As the authors note, automation works best for tasks that follow

well-defined procedures that can easily be performed by sophisticated algorithms.

In other words, psychology is so ill-defined, so unsophisticated, so anti-algorithmic, that it defies the power of even the best imaginable logic-machines to successfully imitate, in any way, shape, or form. Their efforts to do so will forever result in 100% failure.

I mean, even anthropologists can’t say that!

Hmmm. Maybe, for psychologists, it’s not such good news after all…

Replication crisis, anyone?

The HRA report does not exonerate the PACE trial, it merely confirms that its Research Ethics approval was in order

Great news. The PACE Trial controversy has been resolved! Oh, wait…er, no it hasn’t.

Rather, the spin cycle of eminence-based medicine continues.

The UK’s Health Research Authority have released a report on their assessment of the beleaguered PACE Trial, and have concluded that they are happy with it.

Cue the usual well-paid, eminent, professorial figures haughtily patronizing the great unwashed with their I-told-you-so put-downs and human webs of self-congratulatory mutual back-slapping.

You know the drill. Patients, scientists, academics, advocates, and public representatives point out glaring errors in the PACE Trial design — errors that would return a failing grade in an undergraduate research methods assignment — and call on regulatory bodies to withdraw their approvals accordingly.

Meanwhile, the PACE Trial’s authors, together with their extensive network of professional contacts (which in a place like the UK is so intertwined, convoluted, and overlapping as to make genuine peer-review a real practical challenge) chime together to defend what is literally bad science and, moreover, to condemn those who criticize it as amateurs, upstarts, and know-nothings.

It’s a true class system. The aristocracy have produced their PACE Trial, as befits their status as well-off denizens of civil society. The patients — those proles — must shut up and learn to know their place.

Now that the HRA say they are happy with PACE, the aristocrats have been crowing, as aristocrats are wont to do.

However, it is worth paying close attention to what the HRA set out to do here. See, for example, their own very words (emphasis added by me):

In assessing the HRA’s findings, it is important to remember that the agency’s remit is relatively narrow—it focuses on process. As the report notes: “Our concern as a regulator is whether the study was properly approved by the Research Ethics Committee (REC).

The report includes this important disclaimer: “It would not be appropriate for the HRA to seek to resolve…debates about the quality of the study. Discussion of the meaning and robustness of results is how science is expected to proceed.

And this: “We also note that some of the criticisms of the PACE trial which have been brought to our attention are outside our regulatory remit and so we are not in a position to comment on them.”

In short, the HRA do NOT find that all with the PACE Trial is ay-yippety-eye-okay.

They do not find this because they do not even try to find it. Let me — or, rather, let them — repeat the point:

“We also note that some of the criticisms of the PACE trial which have been brought to our attention are outside our regulatory remit and so we are not in a position to comment on them.”

Here it is again in larger font:

“We also note that some of the criticisms of the PACE trial which have been brought to our attention are outside our regulatory remit and so we are not in a position to comment on them.”

The good news of course is that several other authoritative figures have been “in a position” to comment on these criticisms, and have done so very extensively.

Hence the panic among the PACE Trial community to find anything — anything at all — that they can use to muddy the waters of debate, and make it look like they have been wronged. David Tuller has elaborated on several points made in the HRA report that reflect the pernicious spread of argumentation errors and groundless assertions that such efforts provoke.

Caution: Spin cycle alert!
(Photo by rawpixel.com on Pexels.com)

One final thought.

Academics, scientists, and researchers — even professors — carry ethical obligations to ensure that facts are conveyed accurately to audiences at all times. The HRA report simply does not vindicate the rigour or soundness of the methods used in PACE, or the soundness of its research design. The HRA report simply assesses whether the trial met the requirements of research ethics committee approval at the sites where it was carried out.

Anyone who uses this report to imply anything other than that the relevant paperwork was filed correctly is misrepresenting the role of the HRA and the scope of their review.

If this is not stated clearly by those with vested interests in the PACE Trial, then I really do hope it is as a result of genuine human error on their part. After all, everyone is subject to human fallibility (even aristocrats).

Anything else would constitute a deliberate effort to mislead, and would be — simply — shameful.

%d bloggers like this: