Category: Twitter

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.

So I went to the Tuam Babies meeting to have my say, and then I realised I shouldn’t have one

I guess most of you already know the background to this. (For those unfamiliar with this story, be assured of its international significance. Check out, for example, this New York Times feature. Or this BBC Podcast. Or just go read Wikipedia.)

I’m from Tuam. This whole issue disturbs me on several levels. And the prospect of a cover-up is so very real. So I attended. And I said my piece.

The meeting was supposed to gauge opinion on what to do with the site: (a) leave everything as it is but erect a memorial to tell the world how much we care; or (b) fully excavate the mass grave, exhume and identify the remains, and return the lost loved ones to their grieving families and enable them to rest in peace after a formal and appropriate burial.

Spoiler alert — I was rooting for option (b).

Let’s cut to the chase. What we are dealing with here is a mass grave, one containing the remains of abused persons, people discarded as second-class citizens, coercively separated from their families, born in captivity, and denigrated with the zeal that only religious sanctimony and god-fearing hubris can muster.

It seems simply unconscionable that any humane society would respond to the revelation that nearly 800 babies have been interred in an unmarked grave — a septic tank, no less — and say, ‘Well…let’s just leave them there.’

And yet that is what was being proposed for Tuam.

* * *

20180723_184802_1280x720

On Monday night, Katherine Zappone, Ireland’s Minister for Children and Youth Affairs hosted the meeting, ostensibly a ‘public consultation’ to help her department to decide what to do with the site.

Yes, you heard correctly. The government are asking members of the public what to do with an unexpectedly discovered unmarked mass grave containing hundreds of unidentified remains.

As one attendee asked the Minister to her face, “What if a dead body was discovered in my garden? Would the police come around to ask me should they investigate?”

(Can you just imagine: “Would you mind if we retrieved the corpse? Or would you prefer we just leave it there in your garden forever? After all, it is your garden…“)

The idea of consultation is ridiculous. At best this is the scene of a catastrophe. In any other mass-casualty catastrophe, bodies would be retrieved and returned to families for proper burials. At worst — and actually this is most likely with Tuam — it is a crime scene. I am not a fan of CSI, but even I know you don’t ask bystanders whether or not you should cordon off and investigate a crime scene.

* * *

In fairness, it seemed to me that Minister Zappone personally wants to have all the remains exhumed, identified, and returned to families. The problem isn’t what the Minister would personally prefer. The problem is that the question was even being put.

The consultation approach creates multiple adverse consequences:

  • It creates unnecessary jeopardy, and potential conflict, by allowing at least some people to believe they have a right to prevent the authorities from exhuming these remains and exposing the full extent of what went on in Tuam. No doubt there will be people who want to not think about this whole issue. No doubt there will be some who want to cover it up. They will prefer if the authorities just walk away and leave well enough alone. But here’s the thing: criminal justice is not a democratic process. After all, sometimes the criminals — and their apologists — are in a majority. The whole infrastructure of abuse that the Irish Mother and Baby homes represent is simply a case in point.
  • It invites spurious rationalizing to support alternate courses of action, even when those courses of action are morally unjustified. For example, at the meeting in Tuam, Minister Zappone reported that her advisers were raising questions about whether the government has the legal authority to excavate the site. They told her that the coroner might first need evidence that a crime had been committed, or that unnatural deaths had occurred. But this logic falls on at least two counts: (a) in many cases you can’t accumulate such evidence unless you excavate a site and examine the remains in detail; and (b) it is always justified to retrieve bodies from disaster sites even when no crime has been committed, so the whole criminality dimension is moot. It’s a red herring. But raising the question in the first place just invites people to lob in their red herrings. It’s what bureaucrats (especially those who want to save the expense of an excavation) like to do.

* * *

Monday’s meeting followed publication of a hastily organised consultation survey conducted by Galway county council. That survey suggested that, while most survivor groups and relatives of those previously incarcerated in the Home wanted the site to be excavated, most local people wanted to memorialise rather than exhume.

That survey finding just doesn’t ring true to me. And when they heard it, it didn’t ring true to a lot of people resident in the town. So there was quite a bit of anger in the room on Monday night. Of the two hundred or so people who turned up, only one person said they wanted memorialisation and not excavation. Another man said he thought excavation was “pointless”, but he didn’t say it shouldn’t happen.

And that was it. Everyone else said very clearly — often very emotionally, passionately, and heart-rendingly — that they favoured complete excavation, exhumation, identification, and return. The consensus was utterly unambiguous.

Many mentioned how offended they were at the council’s claim that local people wanted to look the other way.

The vox populi is clear on this one (even though — to repeat myself — criminal justice is not a democratic process.)

* * *

20180723_190937_1280x720

Some people had speculated that the entire exercise had been contrived simply to cultivate local dissent, and so give the authorities an excuse to take whatever decision they wished. But in the end, Monday’s meeting gave them no such cover. The sentiment of the meeting was essentially unanimous: GET THESE PEOPLE OUT OF THE GROUND.

The media had been excluded (without a convincing rationale having been offered), but there were tweets. Oh boy, were there tweets. Here is one comprehensive thread:

@IzzyKamikaze live-tweeted extensively. Check out Izzy’s timeline from here forward. And here is a thread specifying Izzy’s own forceful speech in more detail:

I’m quoted in this one actually:

(As a result of which I ended up being quoted in HerFamily.ie’s report on the meeting. Oh, Twitter.)

And here is my own thread, for posterity:

* * *

Of course, the media ban did not prevent the media from reporting. And so obviously the main result of that was, you guessed it, misreporting. For example, this is from today’s Irish Times:

Local Fine Gael representative Cllr Peter Roche was at the meeting on Monday night, and he highlighted the fact that there were varying views on what should happen at the site and how sensitive an issue it was for the people of Tuam.

“It is a very emotional subject and there are no winners. There is no other way to describe it other than it’s very difficult to take sides in it. It is very, very complex,” said Mr Roche.

But Mr Roche (who, I should point out, seemed to have been pretty invisible on the night) is being overly vague when he says “there were varying views” on what should happen at the site. Because, quite simply, there were NOT varying views on what should happen at the site.

Again, to repeat, during a 2.5-hour meeting attended by 200 people, one lady spent five seconds saying that she, personally, would prefer to leave the site untouched.

Virtually the rest of the entire meeting was spent hearing an unbroken consensus to the contrary.

By no reasonable standard is that a variable, Mr Roche. It’s the opposite of a variable. It’s a constant.

* * *

But why would people object to the excavation solution? There are probably two reasons.

Firstly, no doubt some of the resistance comes from a residual sense of deference towards the Catholic church. Some of this will be from genuinely devout but nonetheless guilt-ridden mass-going locals, but some will be from the subset of Holy Joes (and Josephines) in the Irish civil service who’d rather the authorities not get involved in highlighting the atrocities of Catholic abuses in Ireland. (I’m just guessing here, of course. Maybe there are none of these people at all.)

Secondly, I assume the issue of financial cost will also come into play somewhere. I heard from that BBC podcast that the excavation might cost €5 million or so. I guess the government might not feel they have that type of cash to spend on such a process.

Mind you, they seem to have found €5 million fairly sharpish to fund this guy’s 36-hour trip to Ireland next month:

pontifex

(Pic: independent.ie)

So maybe, and again I’m just guessing here, maybe the costs might not be a convincing barrier after all. I mean, investigation and resolution of the Tuam Babies scandal is important to the Irish people, right?

Right?

* * *

By the way, here’s what real countries do when they discover mass unmarked graves, even when relating to fraught and troubling periods of their history:

texas

(HT: @bansheebabe)

You see, it can be done.

If you want to make your own feelings known to Minister Zappone, you can hit her up on Twitter here. I’m sure she’s a good person. Let’s hope she makes a good decision.

But in the end, it’s not even clear it’s her decision to make. This is a potential criminal justice matter. We don’t get to decide what happens by conducting a survey.

* * *

As I feebly said at last night’s meeting myself, if the site in Tuam is left alone and not properly excavated, then we are just replacing the old scandal with a new one.

The future will look back on 2018 and ask: How could we have been so callous?

The people who were committed to the Tuam Mother and Baby Home were put there by an uncaring society who looked upon them as second-class citizens. They lived their lives as social outcasts.

Let’s stop treating them as second-class citizens just because they’re dead. Let’s stop casting them out.

Minister Zappone, your legacy is calling.

End this shame now.

Fretting about Twitter is eroding this guy’s ability to think for himself

twittersense
Uh oh. Social media is rotting our brains. Or at least that’s what this particular researcher has discovered. Specifically, his concern is that using social media is undermining our capacity for original thought.

So, shall you tell him or shall I?

YOUR ANXIETY ABOUT THE EROSION OF ORIGINAL THOUGHT IS NOT VERY ORIGINAL.

Continue reading “Fretting about Twitter is eroding this guy’s ability to think for himself”

%d bloggers like this: