Why are psychologists and rehabilitationists so unaware that their research, questionnaires and treatment can cause harm?

Trish

Trish

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Staff member
The heading speaks for itself.

We have had a couple of instances recently of researchers joining us to discuss their research who are completely in denial about the potential for their work to cause harm.

Thus strikes me as very odd. How could they be so unaware.

Discuss.
 
I suspect with the rehabbers (those working at ground level, at least) it's just lack of information. They've gone through a training and a career thinking that some degree of rehab is always possible, and it always helps.
 
Kitty said:
I suspect with the rehabbers (those working at ground level, at least) it's just lack of information. They've gone through a training and a career thinking that some degree of rehab is always possible, and it always helps.
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Interestingly for me, dietitians are taught our help can cause harm. For example in a patient with functional impairments - we can know that it would be beneficial for them to change their diet, but at the same time the cost of doing so may simply be too high so that the benefits disappear (energy expenditure to prep meals for example).

I think part of the reason we are taught this is because dietary interventions are generally accepted to be hard/difficult.
 
I was thinking along the same lines after a visit to the doctor recently.

One factor i think is that they don't understand PEM. They are thinking of fatigue and their own experience of fatigue or in injured "well" people or the elderly.

Having no understanding of PEM, they think a Zoom call is fine as long as there are breaks and it's "short". I'm not pointing the finger at any one researcher. It's the same for doctors appointments via Zoom.

Also there is no understanding of how light / sound sensitivity, bouts of inability to comprehend the spoken and written word that can come on from "no where", inability to sit up or to control a computer aren't filtering through to some researchers.
 
Trish said:
The heading speaks for itself.

We have had a couple of instances recently of researchers joining us to discuss their research who are completely in denial about the potential for their work to cause harm.

Thus strikes me as very odd. How could they be so unaware.

Discuss.
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of course there is a difference between being genuinely unaware

and choosing to not acknowledge

and for/due to bystanders 'choosing not to look', so the old issue of getting caught/that thing about "did the tree really fall in the forest if noone hears it" being the only real driver (external vs internal motivation) for some.

...I remember that being a big one that some used to say a lot when I was at school and only recently really getting that their fascination with something that made no sense was actually them giving away who they were at that developmental point.

Of course it was just sophism and said tree existed, they'd just noted the 'prove it' culture was back-to-front. What exists is what the person who is able to filibuster and argue the longest says. Any tactic allowed. Any nonsense as a refutation. Unless someone is enforcing reality and rules

we are arguing with some who have a different concept of what 'real' or 'reality' or 'fact' is even (and I think that is what they mean when they talk about 'their beliefs' so much)


EDITED to add: OK I've looked up and clarified the phrase, and it is about 'and if there is noone to hear it, would there be any sound': If a tree falls in a forest - Wikipedia

But it is almost more disturbing when you read my boldened last line on this. And then think too hard about the situation we've been put in.

"The magazine Scientific American corroborated the technical aspect of this question, while leaving out the philosophic side, a year later when they asked the question slightly reworded, "If a tree were to fall on an uninhabited island, would there be any sound?" And gave a more technical answer, "Sound is vibration, transmitted to our senses through the mechanism of the ear, and recognized as sound only at our nerve centers. The falling of the tree or any other disturbance will produce vibration of the air. If there be no ears to hear, there will be no sound."[6]"
 
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It’s inconvenient to their belief system and personal values. Sunk cost fallacy. The dominant hegemony doesn’t overlap with the patient group (it’s misogyny) a bit like trying to convince the Met that they’re institutionally racist and sexist.

we actually need a psychologist to look into it.
 
Perhaps some do realise that their research and questionnaires and treatments can cause harm. Surely some realise that their patient may not enjoy being labelled neurotic or fearful of movement or hysterical. But, maybe they think, just like an exercise session, there's no gain without pain. We have to face the cold hard reality of our inadequacies as people before we can begin to take the steps to becoming well. They may think 'the ends justify the means'. A sort of 'tough love' approach?
 
Hutan said:
Surely some realise that their patient may not enjoy being labelled neurotic or fearful of movement or hysterical.
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Haven't they made this part if it though? They make us unreliable narrators to our own experiences and try to convince us that the fact we don't know what's good for us is part of the false beliefs they tell us we have.

My understanding is that they think we have had some kind of psychosis following the precipitating illness and now suffer under the delusion that we are still unwell.

The idea that millions of people all have exactly the same delusion (with consistent symptoms reports) always struck me as incredibly unlikely.

Occam's razor says when you hear hoofbeats think horses not zebras. Therefore the most likely explanation is often the right one.

What's more likely; viruses and infections that make you unwell could continue to make you ill after the acute phase (evidentially shown to happen accross a large number of infections, at a fairly consistent rate) or millions of people experience exactly the same delusion, with the same symptoms - without ever talking to each other - as ME and LC and other PVFSs happen worldwide, or a small number of fiscally motivated people with a lot of power and the connection to create the evidence are wilfully deaf to their patients?

And that those motives that might have created their glittering and acclaimed careers and reputations might rest on their continued wilful deafness.

There are none so blind as these who will not see.

They do not want to hear that their is a problem, as that would injure their identity as 'experts' and therefore know best and are helping people.

If we, the untrained patients, know better and are right, what does that say about their lives, careers and knowledge?

Full disclosure, I am a psychology graduate.
 
I don't think it is a great mystery. They stand to lose hugely if the truth about this farce is ever accepted by broader society, especially the political class. Reputations (professional, and for the senior people also personal), careers, empires, professional status and authority, importance and influence, self-worth, incomes, etc., will all go on the chopping block.

If it turns out they are wrong – and they are – the psych profession is going to take one the biggest hits it has ever received, and it will be entirely self-inflicted, in particular for how they have done everything they can to cover it up and blame their victims.

It is hard to imagine a more powerful and compelling set of disincentives to facing the truth.
 
JellyBabyKid said:
Haven't they made this part if it though? They make us unreliable narrators to our own experiences and try to convince us that the fact we don't know what's good for us is part of the false beliefs they tell us we have.

My understanding is that they think we have had some kind of psychosis following the precipitating illness and now suffer under the delusion that we are still unwell.

The idea that millions of people all have exactly the same delusion (with consistent symptoms reports) always struck me as incredibly unlikely.

Occam's razor says when you hear hoofbeats think horses not zebras. Therefore the most likely explanation is often the right one.

What's more likely; viruses and infections that make you unwell could continue to make you ill after the acute phase (evidentially shown to happen accross a large number of infections, at a fairly consistent rate) or millions of people experience exactly the same delusion, with the same symptoms - without ever talking to each other - as ME and LC and other PVFSs happen worldwide, or a small number of fiscally motivated people with a lot of power and the connection to create the evidence are wilfully deaf to their patients?

And that those motives that might have created their glittering and acclaimed careers and reputations might rest on their continued wilful deafness.

There are none so blind as these who will not see.

They do not want to hear that their is a problem, as that would injure their identity as 'experts' and therefore know best and are helping people.

If we, the untrained patients, know better and are right, what does that say about their lives, careers and knowledge?

Full disclosure, I am a psychology graduate.
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THIS. :emoji_dart: Wish I could like this post a million times. It has always struck me that how the heck can millions of people all over the world, and now even more because of Long COVID, have the exact same notably infection-type set of ongoing very distinctly physical disabling symptoms after a virus or bacterial infection (eg Lyme Disease), and somehow that's some sort of global psychological/behavioural delusion? It has never made an iota of sense to me, and it's gratifying to see that thanks to the rise of social media and a recently more sympathetic press, others are now becoming aware of the situation and finding it a head-scratcher too.

But yes, those who made this huge mistake are completely unwilling to acknowledge that they were/are wrong, for the sake of their careers and reputations and all the awards they've been given. Not a thought given to the welfare of very ill people who just want to get back to having a healthy body and be able to work and have a life, but whose lives have been destroyed by this wilful betrayal of patient wellbeing.
 
Sean said:
They stand to lose hugely if the truth about this farce is ever accepted by broader society, especially the political class.
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I'm not sure, you know. I think it's actively encouraged by the political class, and is partly driven by political ideology. Perhaps not the initial theory, but the way it's become so deeply embedded.

There's a chance of wider society regarding it as a scandal, but it's not a given. At the moment, something has to be big (or made big, like the Post Office documentary) for people to respond that way; so many are struggling, nothing's working as it should, all the news is terrible. If it were reported tomorrow in Britain it might make its way up the news agenda, but not for long. Things like this are just what we've come to expect.
 
A bit of a rant.

Why are psychologists and rehabilitationists so unaware that their research, questionnaires and treatment can cause harm?

To answer my own questions:

Research that causes harm includes all the stuff about catastrophising and chlidhood trauma and perfectionism and anhedonia and all the other crap that is based on either inappropriate questionnaires, or attributing associations to causation.

Research that causes harm also includes all the clinical trials of psychological and behavioural (CBT/ACT/GET etc) treatments. I won't bother to spell out all the flaws and scandals.

Questionnaires - the most stark example recently of a rehabilitationist being unaware and in denial was Sarah Tyson telling us not to be silly when we suggested questionnaires can cause harm. Even if she accepts that some questionnaires in the past were not ME specific, she and all the other members of BACME and the trustees of the MEA are assuming that all we need is better PROMs. We have other threads where PROMs are discussed so I won't go on about it here.

We have an example recently of a student stating confidently that an interview-based sociological/psychological study can't cause harm. I don't blame the student, I blame their supervisor and their professional organisation who have clearly assured their students and psychologist members that such interactions with pwME are harm free.

And then there's the clinics and treatments. We have seen the study Graham led that found English ME/CFS clinics keep no records of harms and don't do any follow up of people who have done their short interventions. I find this the worst of all - the complete confidence among therapists that they know how to implement GET/CBT in a way that won't harm anyone. That to me is unforgivable, given the survey and anecdotal evidence of multlple cases of severe long lasting harm with PACE compliant therapist led interventions.

How could they be so incurious? How can they go on parroting, as the new Australian GP guideline does, that the people who say in surveys that they were harmed were just doing it wrong. Survey evidence directly contradicts this. They must know that.
 
A few random thoughts:

There seems to be a belief in the world of psychology (& social science) that good intentions are sufficient to protect against harm. By contrast in the hard sciences and among physician-scientists you're disabused of that notion very quickly indeed.

There also seems to be a prominent strand of opinion that psychological interventions (& the interventions of social workers) inherently cannot be harmful. When prescribing antidepressants the prescriber will balance potential known harms against potential benefits and advise the patient accordingly (e.g. some SSRIs/SNRIs can increase the risk of suicidal thoughts, so the patient is advised to report any promptly & arrange regular follow-ups during the first few months of use). By contrast it seems to be assumed that common psychological interventions like CBT cannot possibly be harmful.

The psychological profession also isn't exactly known for its intellectual rigour (at least in the UK it is far easier to study psychology than it is medicine). I don't know if this has changed but it used to have a reputation as being a fairly soft option for people who prefer talking about feelings to uncovering scientific truths. Given that the psychological profession has not yet grappled in any meaningful way with their replication crisis I have my doubts as to whether instituting greater rigour is even possible in the short or medium term.

Finally, in the ME patient community we have a great deal of knowledge of the injustices associated with psychologisation but that knowledge is essentially siloed among patients and psychologists have not grappled with that history in any meaningful way. For a psychologist it is perfectly reasonable to pick a condition and talk to patients diagnosed with that condition about (say) their childhood trauma. Most ME patients will automatically see that as contributing to an unwarranted and harmful narrative being imposed on us from outside. Until psychologists are taught about the history of ME and its associated epistemic injustices they will never understand this reaction.

Update to add: there also seems to be a belief that formulaic following of processes can insulate against harms. For example: having some token patient group review your patient-facing materials, getting a favourable REC opinion. In precisely the same way GRADE advocates believe that following their process will account for all risk-of-bias and research methodology concerns.

Update to add: we also should consider the broader culture in academia these days. "Publish or perish" is just the very tip of the iceberg.
 
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Nightsong said:
there also seems to be a belief that formulaic following of processes can insulate against harms.
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Yup.

Risk assessment for a nighttime wildlife survey:

It'll be dark, you might trip over something.
There's a lake, you might fall in.
If you go off on your own and your battery fails, you might get lost.

It focused only on what happened in the group, even though the most serious risk was afterwards—driving home at 1am after a day at work, a hasty meal, and several hours of walking and intense concentration. Also, if people were over-tired on the day they would have felt some pressure to go anyway, because it wasn't made explicit that not only is pulling out due to fatigue allowable, it's advisable.

It seems to have been very similar to the approach of the GET-type clinics. What we do here is safe and well managed, and afterwards ... well, we can't control for that.
 
Trish said:
How could they be so incurious?
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This.

I find it completely unfathomable.

I also cannot understand the blatant and glaring contradiction between dismissing us when we say your questionnaires are unhelpful but when we produce surveys saying this intervention has caused harm, that can be completely dismissed as anecdotal evidence.

It's quite literally Orwellian; our evidence good, your evidence bad.

The continued lack of learning from mistakes baffles me completely. How many times do we have to keep repeating the same mistake before we learn from; the cumberlege report, the tainted blood scandal, the post office scandal etc
 
I question how they're doing their reflective practice. Everyone has become so used to thinking of patients in a discriminatory, dismissive, and derogatory way, that in their minds it might be a given that success proves their theories, and those that are harmed are not their fault anyway. You'd think that the number of them worldwide would make them question themselves more deeply. Because we are thought of that way, we are not properly listened to. Reflective practice | (hcpc-uk.org)
 
It makes me feel sick - literally queasy- when I think of the psychobabble which has infiltrated my medical treatment.
A GP, on hearing I had ME - did your parents divorce when you were a child?
Me-er, yes
GP - oh so you had a traumatic childhood, that’ll be what’s caused this.

Dr Fraiser and Niles Crane have a better understanding of Psychology
 
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