The utter stupidity of questionnaires as tools for diagnosis. A lighthearted look at some questionnaires misused in ME/CFS research

For a disease with no diagnostic tests there are sure are a lot of biomarkers for ME/CFS! But hey who doesn't like a misleading questionnaire instead?!

 

It's not just ME/CFS. The Hamilton scale for example is widely used for depression and it's utterly disgusting. You can very easily have any chronic illness and be diagnosed with depression on that basis because loss of functioning or any symptom really = depression/somatization according to that scale.

What I've noticed is that some psychiatrists don't even use these questionnaires, they just talk to you and try to get a subjective feel of your emotional state. Which is, ironically, a lot more accurate (and that says everything about psychiatry doesn't it?).

Every time i had to take these questionnaires I've been diagnosed with something completely ridiculous on that basis, and then the next psych would say "no that's wrong you clearly don't have that". The only time this didn't happen was at the beginning of the illness when i was still delusional and euphoric that i was going to get better soon because i was sold snake oil by respected and accomplished doctors telling me psychiatrists could easily cure me.

50 doctors, 10 years and 60 drugs later, with 0 progress, and no meaningful research happening, and 99% of doctors still denying the issue, it has become clear that i have no future and any hope that i could have of being able to be useful or accomplished is pure delusion.

If psychiatrists were actually good at analyzing the human mind, and didn't have to follow medical politics, they would be telling me that i'm delusional for thinking i can get better. Truthfully, some did tell me it's weird that i'm not depressed with my quality of life, so i guess they kind of did in their own way.

It blows my mind that something can be this flawed and yet doctors still pretend it has any scientific value whatsoever in this day and age. It's a cult.

 

A related thread about an article on depression questionnaires.

https://twitter.com/user/status/1516413964221128720


Author-provided access to the article: http://rdcu.be/cLk9N

 

Great thread @Trish - I love your witty comebacks!

My current favourite for a pointless questionnaire comes from our local pain clinic ( in fact the questionnaire is filled with such obviously leading questions, that I've decided not to bother!)

I don't have enough spoons for so many variables and this kind of ****!( Don't they know that I'm in pain, for crying out loud!!)

My answer would be just to write YES! across the whole stupid thingl

 

I visited the clinic around 8 years ago and was completely Gaslit. I wanted advice about medication, and eventually got to see a medications nurse who told me not to take strong medication unless I was going out! Judging by this form nothing has changed....

I am trying other types of support where I won't be made to look and feel like an idiot!

 

This questionaire is pointless, they need only replace all those items with one...

Are you having a normal/natural/appropriate response to being in severe & chronic pain?

Then, if you answer yes they can tell you that the normal/natural response to severe & chronic pain is clearly abnormal, because they - who are in no pain at all, do not have those thoughts/feelings....
So therefore it must be the natural response to the experience that is causing/perpetuating the experience....

And then we can get the poor sods (the clinicians) some kind of help for their bizarre delusional thinking.

 

Aside from the worst examples of asking about symptoms and interpreting them willy-nilly, most of the issue with questionnaires is about how they're generally used, as if the answers are precise data points, rather than fuzzy fields of values that differ for everyone, even if slightly.

I often use the comparison of how medicine is currently in a similar state to physics in the early 20th century, when it was facing the issue of the quantum nature of reality, of fields of probabilities rather than discrete point-like particles. And this is roughly the same issue. Unless they ask objective questions, like how many hours did you sleep?, questionnaire answers are ratings, not measures, they are a fuzzy area centered around a value but they do not mean that value precisely and certainly not among a group of individuals, who will give different values to the numbers used. So not point-like particles with a precise location, rather a general area that can be frustratingly fuzzy.

Questionnaires can be useful for superficial generic information (unless they ask objective questions of course), it's their use as real measures meaning real things in real life, when convenient anyway, often with decisive conclusions, despite the complete fuzziness of data, that makes interpretation for anyone person almost useless.

They are probably the least reliable way to gather information, again unless they ask simple, direct unbiased objective questions with clear objective answers, but since they can be distorted and manipulated, or interpreted willy-nilly, to mean anything, their use is excessive and wrong for the most part. I have never seen a questionnaire that was comprehensive about my condition, they are all simply inadequate, if not entirely unfit for purpose. But they are often held as if their answers were as solid and indisputable as the best data in physics.

So the issue is not so much with the questionnaires, as it's how they're used. They will always be inadequate if they can so easily be distorted, and for the purpose of psychosomatic ideology, they will always be distorted, otherwise they have nothing.

The problem is more with the questionnaire makers than the questionnaires themselves, their inadequacy is simply derived from being made for inadequate purposes by people who don't understand what questions to ask and leave most relevant questions unasked. Questionnaires can't account for unknown unknowns and boy is that a proper definition for everything about chronic health issues, they don't have a clue and can't even get a clue about that.

 

I have had to fill in the Chalder Fatigue Questionnaire twice. Both times just before a long-awaited appointment for something I wanted (diagnosis the first time, tilt-table test the second), so I felt it was a particularly dirty trick to have that snuck in at the last minute. Each time the cost of causing a fuss was outweighed by the benefit of the appointment, so I just obediently filled it in in the most contemptuous manner I could muster. I certainly didn't feel obliged to treat it with any seriousness, so just ticked all the boxes I guessed would cause me the least trouble.

It's a thoroughly dirty business, that's for sure.

 

With my FM pain and shall I dare say fatigue, ataxia (weirdo walking when suddenly overwhelmed by being outside), dizzyness, etc. etc. and questionnaires:

The professional reason behind a questionnaire is to screen for concurrent or pre-existing depression that is supposed to worsen existing pain. Since there aren't many interventions for chronic pain (including meds) that work well (my personal measure would be a reduction in pain by at least 60%) and since the medical profession still believes in the apparent effectiveness of anti-depressants for depression, and that's all they have to offer, they will SCREEN AWAY.

But most of the psych lit lists depression and anxiety is the same breath as purported causative factors for FM (ie, sudden stressful event, accident, etc.) and so the depression/anxiety listing gives the distinct impression of causing the chronic pain.

Maybe for the naive (just diagnosed?) patient, a questionnaire will only be confusing, but for the long-afflicted, it seems like a knife going in.

 

What would a questionnaire about the usefulness of questionnaires show?

 

It would probably be biased by people who like answering questionnaires. It would definitely show that people like answering questionnaires.

Damn there's a perfect comic for this and I can't find it. Oh, well.

 

lol love that idea.

but we'd need to find a way to employ the same kinds of selection bias as are used by the bps crowd.
It's be tricky because, (pre my experience of ME & learning the stupidity of them), i'm afraid i loved filling in questionnaires, i was a sucker for a 'Cosmo quiz' etc. I wouldnt have relied on the results for anything serious but i found them great fun, as did all my friends at the time (as a youn woman)

We could have a screening tool & call it a 'feasibility study'

 

@Trish your answers to the questionnaire were so satisyfing to read!

I hate answering questionnaires. It takes so much brain power to try to avoid all their traps of manipulation and misinterpretation, and then they never allow the patient to actually convey the important things anyway.

Right after I got my ME diagnosis I went through a period of being forced to see so many psychologists, school nurses etc, that I learned the depression questionnaire by heart. I started wondering if they wanted me to be suicidal since everyone kept giving me this questionnaire asking that quesiton in 10 different ways. But still no one actually talked to me or wanted to listen.

The questionnaires also felt invasive and too personal, when it came from someone I had just met 5 minutes ago, and I didn’t even want to be there or talk to that person in the first place. Felt like a very poorly thought through practice.

 

That's awful I'm so sorry you went through this and second the comments from @Trish

There is a very important point you've made in here - regarding the repetitious use of certain surveys and how these in themselves should be being assessed (by any sensible system that actually assessed the impact of its own behaviour) for how that can impact people. I think that there is plenty of science in psychology and advertising that shows if you repeat something to people then it has real effects of getting ingrained.

Questions such as those therefore having no such warning or planning of 'communications' (I don't think there is a term in 'therapy' because....they just don't seem to care enough to be as organised as marketers) is plan irresponsibility for their own actions or patient. As you say the idea that was about your wellbeing (particularly psychological) rather than theirs is laughable.