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

Eddie had a better understanding (understanding human psychology is essential for Jack Russells).

Despite his passing in 2006 he probably still has a better understanding.....

 

I've copied the following quote from David Tuller's interview with George Monbiot, Trial By Error: Guardian Columnist George Monbiot Discusses His Scathing Rebuke of the Biopsychosocial Brigades--Text Version | Virology Blog
because I think it actually applied to a note I was thinking of for this:

"So everything the Science Media Centre said just gets accepted right across the spectrum of journalism as being true, because they think it’s science. And part of the problem is that there are very few scientists in the media, there’s a few specialist reporters, there’s a few people like me with a science background. But on the whole those who make the decisions–the editors, the newsroom staff, they’re not scientists. They’ve got a humanities background.

When someone comes along and says, ‘You know, this is science, we’re representing science,’ even if they themselves have no scientific credentials, which is the case with Fiona Fox and the whole of the rest of that Revolutionary Communist Party group, if they can speak the language of science and they can say we’re linking you up with these eminent scientists, there’s no questions asked. It just, ‘All right, that’s science, okay, we’ll just report that as is.’"


I've noticed that the people most swayed by the mind-body nonsense, and likely to quote it, in my layperson's circle are:

- arts grads

- those in vocational occupations , particularly where their entry route didn't involve a degree where there was critical thinking at a high level.


That doesn't make the rest perfect, because then there is the sense of you seeing whether they 'can be bothered to care'. Which in our case involves actually listening to what we say to being with rather than just writing us off. But these types really seem to connect with/love their stories that makes it easy to repeat as if you understand something they think is really clever and then there’s the learning by rote.

Anyway, to connect the first bit, I also note that in the jobs I've done I struggle to not let my jaw drop when people who are supposed to be at a certain level of professionalism would happily say things like "I just don't do spreadsheets, and I don't do maths" even when their job required that - not to a high level they couldn't achieve given they perhaps had a PhD in something else. The entitlement.

But I think that this is exactly what is going on here. A lot of psych grads go into the area having avoided science. There are basic courses they have to do, but otherwise it it is shocking they can complete it without competence in the 'penny drops' rather than 'box ticks' of those subjects and design. I suspect you get a lot of physios who are the same. Even if they 'go into research'. They 'outsource the hard stuff'. And they didn't really go into research first and didn't end up in the area because 'they are in search of truth and knowledge'.

They came here for easy-pickings. And don't fancy a discussion on an area they aren't interested in finding out enough about to 'realise what they don't know' to the extent they have to do something about it. Which is why they do an outright dismissal (doesn't mean they have proof it doesn't harm, they just neither care or see it as their resopnsibility) and quickly scarper. It’s the bit that ‘isn’t their bag’.

Because they've compartmentalised 'their bit' and absolve themselves of any responsibility beyond choosing how far they will think in their impacts section. Which isn't exhaustive and seems only to be limited to a sales pitch, rather than having to cover potential harms. 'methods' or 'the rest of the illness' or whatever they tell themselves : 'not the part they are interested in'.

And yes I have more sympathy for students who are just at the beginning of the pipeline that is meant to shape them not by skill but by ethical decision, piece by piece. The ground quite quickly comes up to meet you however when you get to a point you can't unpick, so you need to make sure if your intention is to get the piece of paper in order to 'do good' that you learn the real lesson and research carefully who your potential supervisors will be at the next opportunity.

 

Of course what you are talking about is: ethics. There is genuine denial, which I don't doubt is also the case. And then there is also 'don't expect me to care', not my fight, 'so what'. A lot of people just don't have ethics. Unless they know they will be caught and it will make a difference to them and what they wish to achieve.

and it seems today 'having to care if it harms' is translated as 'compassion' in certain industries and superfluous. Not noting even these in particular. But I've noticed this change in terms and find it very weird, it is like the same people who try and portray empathy - the skill - as being overly nice. This is a rebrand of 'due care and attention' in the circs I hear it uttered. Into pretending doing such things properly is 'above and beyond' and 'only for the special people' who have enough emotional whatever to want to eg treat those patients appropriately (again not even ME specific here).

They are incurious because they are jobsworths. Or more likely also focused on their own ambition, and happy to put aside 'other costs' that happen to others. They made that decision and the last thing they want to do is have someone insisting they spend time admitting it, they can't explain because they don't care and aren't particularly interested. And yes for a student there could be justifying circumstances , everyone needs to pass and most peers aren’t doing this checking fit their projects - it’s just a shame this area needs it and they don’t get extra time compared to them. But as you go up the chain the justifying becomes weaker as an excuse (but minimising the illness helps with that too when someone is battering who has it worse when they are in a stressful situation)


And the response you got wasn't really that they didn't understand what you said , they just were using it as a dismissal because they weren't 'going to entertain it' because it 'didn't work for them'. They didn't want to do that work. Which would be a core part of most jobs for most things, but they see it/have worked out they can get away with skipping here.

And they weren't going to sit around and explain once they realised they weren't getting what they were hoping for in an easy-pickings sort of way. That's exactly how certain personality types act - even when it isn't really their emotions, just fake in order to distract and coerce in a situation that 'isn't working for them' or they aren't getting their way. Or think the answers might be simpler than they are and little things to add. Or people who’ve got themselves in a situation and can’t offer what they need to and I wouldn’t know how to handle it if I was a student with a deadline necessarily.

Some people aren't there for the truth or right. Or not the entire truth right now in a way they can’t do much about. Or think they can’t. They turn up on science forums because they want to know if they can get participants or to tick a box saying they did it. ANd manufacturing an argument when things actually turn out to expect real listening and real consultation is normal/common for many types when they get themselves into a situation they aren’t prepared for, and the words of it are perhaps best not read into too much.

But when it is too explosive .. What came before ... and made someone want to close down the conversation ... well that is worth looking back at because that is where your clue is. And that is what causing a big 'to-do' was intended to distract everyone enough that it got forgotten about

It is a big clue because the other reaction/tactic is the polite thanks and bye (we’ve all had to do it when we’ve had a job to complete with intentions we’ll go back one day maybe) or 'quiet slunk off' and much as some can't hold their temperament, even they learn from that issue that faux outburst is a nice little tool when they feel cornered or close to being outed on something.

 

And a lot of people will go to somewhere or someone with an intent of being quite 'transactional', they want something and they have a plan to get what they require and a plan - if they think it might come up - or just well-worn tactics of avoiding the 'giving' or 'giving away' or 'discussing' part. Not all people who come here 'to discuss their research' actually want their research discussed. Some it might be somewhat situational for them, but they need to be conscious all of the way so that they are happy with the choices and compromises they make and they avoid stepping over lines they could have avoided which then dictate future paths. Others are fully in control of all those choices.

But they've decided there is enough worth and are confident in themselves enough, or desperate enough they give it a go trying to thread the needle. Said type will believe (to the point that on certain days they will try and convince you as if you are the one who has missed the point of the world if you get close enough to them) said logic and not get why you would expect any different. It's: 'because they don't have to'.

And yes, with pwme the scary thing is because it doesn't affect them yet that way. Once it does then your window has gone. SO you don't even need to be entirely altruistic or team-focused, just not the type who is happy to roll the dice and assume you'll be different/land on the right side?

The funny thing with a lot of areas for ME...

it actually seems to be one of the more forgiving areas for someone to take their time to get up to speed with. Or even do a 180 on or have believed other things somewhat. But it has to be genuine (as a lot who haven’t also try and pretend ) so expect trust is shown by action snd time etc

Probably because we all went through the same experience of trying to 'beat the condition' and not even realising the bigotry was bigotry that we had within ourselves re: effort = intrinsically good and so on.

And because the illness and how to measure and treat it is going to in itself be complex and probably any of us couldn't write a protocol perfectly first time because of the gaming out needed.

But there has been a lot of insidiousness and coercion and all sorts of sinister stuff targeted at pwme, probably more than any other, and rather sickly because they are especially vulnerable. As someone I know noted 'it's about as moral as people who distribute dementia lists for cold-caller cons', and it makes the area catnip for certain types. So if someone pretends to not understand why they might be asked questions, or indeed expected to be curious to understand the risks...

So I think if anyone was trying to work out how to identify honest research from those who are charismatic with less good intentions then that latter part is exactly where the interview would look to focus, and what section needs to be incorporated into any research funding proposals? Ie a section on risks, limitations, applicability to population, validity issues and how they are controlled and so on. As I suspect it’s all a compromise between those but there is a limit to how poor one can be and it needs to be explicit where the trade-off is and where the limits in reliability are?

Useful for actual charter/research proposal protocols where these can be controlled.

Also useful because the process of someone having to fill these out - even if it is because they are having to tick the box and they don't really want to believe in it all/do it, genuinely probably is the only way you will force open certain ears: making it worth their while/making it something you are actually going to be assessed on.

 

On that note. And maybe it is cloud-cuckoo land, but there is stuff we can do if we start actually thinking like this. The 'what's in it for me' question, but also the fact that people are given set timescales to complete research at whatever level and there are always easier and very hard options. Going against the literature is particularly risky, as well as hard.

Try writing an undergrad piece of research on an area that has only a few studies done on it yet. WHen you've certain boxes you need to tick against a marking scheme. Or choosing an area that needs a complex research design or you have to use phenomenology or some other behavioural monitoring with cameras vs just doing an online survey when you've only x amount of weeks to bang together something with a literature review and all the rest with it too. It makes little sense.

We can make good research into the area easier. We can keep logs of the good stuff on good topics, we can probably but things together on themes to do with methods and phenomena so that if someone needs to justify a certain method then at least the work is part done for them.

I think the other stuff will always be simpler so it is only going to be part-way levelling up the field so the more we can do that might seem like spoon-feed the better. Because it isn't really. It's just that you either have nothing in certain literatures so they will have to be trawling other subjects, or it has been filibustered and how would someone new to it know what to filter in and out.

And certainly even pwme who are milder wouldn't know what the limitations would be for those who are severe. Or how or why it is important that research accounts for the spectrum. So even if it isn't a charter then us starting to organise describing these things might help for those who might genuinely be open to getting into a new area?

Heck we could even talk about and try and think of 'simpler' types of projects that could be someone's project in different areas.

I'm sure there are catches to all of these but maybe there is something worth working up within it?

It all gets a bit late once something is 'in it' and has a deadline and a boss or project supervisor with a different subject discipline and certain views. I guess depending on different situation you can only be open to so much information given what you might be able to actually change and what you have on your plate at the time.

Maybe catching things early on/before anyone even gets to projects and writing bits that might count towards intros to for different levels - I know this is a nevernever type project (but maybe something for MEA or charities to involve someone like Katrina Pears in? and it could take place over a long time period to allow all pwme who might have things to contribute to do so at their own pace) but...

 

The problem with psychologists starts with local doctors and specialists sticking to what they have learned; ME/CFS is a 'between the ears thing'
It doesn't even matter how long ago,10, 20 30 or 40 years, they finished their training.

Doctors only do a bit of testing on a patient to rule out 'the other things' and after that they throw the ME/CFS patient over the wall into the psychologists' courtyard with the message : Í could not find anything wrong with this patient, must be psychological.

2xCPET, tilt-table, let alone with doppler, hand-grip-test? Doctors don't study ME/CFS, so they just don't know about those tests.
And all those doctors think that they themselves are scientists. One for me, one for Trish and one for Kitty, just in case. Others feel free to join!

That's how all the F...D's start. Psychologists feasted on that.

 

This is the bit I really have a problem with.

I do a LOT to learn about my issues, whatever they might be, and do the best I can to improve. I might not do it perfectly, but I ask questions and get curious, listen to feedback, take action and learn.

This is the bare minimum we should expect from those tasked with taking care of our health and our lives. I am more than prepared to do it myself and I am borderline severe, so I don't feel that I am being unreasonable?

 

This too. We are far better informed then the so called specialists. A little humility might be helpful here.

As Michael J Fox said, along the lines of listen to the patients they are the experts as they live with the condition.

And these patients READ!!

 

I wonder why it's particularly difficult for psychologists, though?

In other areas of medicine, any number of long-established practices have been proven to be useless or potentially/actually harmful. A variety of reactions would be expected when the evidence first emerges, but would any of them be that it calls into question the value of a life's work? I don't get the sense it does—on the contrary, many seem to be positive about new learning and developments. Clinicians only have whatever research is available at the time, and it's not a criticism of them or their practice if it turns out to be wrong.

 

That's the most common comment on the Long Covid sub-reddit. Hasn't changed since the beginning. Some form of: "they were nice and attentive but nothing they did helped".

Most people will thank someone who tried to help, especially when they are suffering. After I first got ill, one of the things I did was go see a psychologist. It was entirely useless. But I distinctly remember thanking her on the last appointment. It was a PhD student psychologist at a university supervised by a professor. They didn't asked if it helped. In fact after I exhausted the reason why I was there, the rest of the sessions was spent talking about an irrelevant topic. Something that, had they asked how important/bothersome/whatever it was to me, I would have said 0/10. They never asked. It was just the first thing I could come up with when a change of topic was brought, I couldn't think of anything else. My mental health was great at the time, and before I was ill. I had a mostly lucky and easy life.

I'm sure she got a good grade and everyone involved thought it went well. It was a complete waste of time and money. But they didn't ask. Had I been asked to make a formal assessment, that would have been the takeaway: nice and well-meaning, but completely useless to me. It was pretty cheap, given that it was a student program. Still not worth it, because it had nothing to do with my problem.

Psychology seems like the embodiment of one of the main lessons I apply to most things I do: the answer to the question is not necessarily the solution to the problem. They always seem to think that they're the same thing. Even when the question has nothing at all to do with the problem.

 

You learn that on your first student firm as a medical student. It ain't difficult if you have your eyes open.

 

Because all psychology is based on a deeply flawed model of how our thoughts work.
And so nobody can produce any reliable testable predictions so there is no science.

The flaw in the model is in front of our noses and a Martian might well see it at once but human beings find it very hard to see.

But I digress.

 

Maybe they moved to psychiatry thinking that if they screwed up badly not so many people would notice.

 

Check and double check the first patients and stop prescribing CGT/GET, could have prevented a lot of harm.

Pure wisdom Trish! The professionals are uncapabable of understanding your wisdom when it is about ME/CFS. They'd rather deny reality.

"I have been taught my therapie works, now I see it doesn't, but I don't know what else to do. The doctor ordered me to treat this patient with this therapy".

In the world of the blind the one eyed person is king. Psychologists an rehab people were appointed to be kings, because others didn't want to have anything to do with ME/CFS patients.

Do not harm the patient has become secondary to do not harm my career.

 

This.

 

My daughter was an editor before becoming too sick to work. She noticed when doing psychological and health questionnaires that some questions did not make sense, or did not allow for acccurate answers. Some of them were outdated (referring to social activities that haven't been popular since the 1950s), ambiguous ("I like drama") or parochial (usually to the USA).

She also noticed that psychological questionnaires were set up to exclude rational responses from sick people. So questions like "I worry about being ill – all the time / sometimes / occasionally / never" were designed to label people as having some kind of complex. But how could, say, a person with a terminal illness and small children answer that question? If they said they never worried about being ill, that would be quite odd and indicate a problem in the other direction.

Also, "I don't think I will get better". How is a person with a chronic illness supposed to reply to that? If they say think that they will definitely get better, paradoxically that would indicate that they are deluded.

And, for those looking to game the system, it was very obvious how to answer to make yourself seem normal psychologically, e.g. "I am fascinated by fire" (don't ask that to Michael Faraday), "I think I am better than other people", or the shockingly obvious "I have been given a special mission from God" (covert missions excluded?).

She actually couldn't help herself from making corrections on some of them. It's the family business

Anyway, my point is that the people writing the questionnaires seemed to be demonstrating woolly thinking.