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

Discussion in 'Subjective outcome measures (questionnaires)' started by Trish, Aug 29, 2022.

  1. Trish

    Trish Moderator Staff Member

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    We have other threads where we take a serious look at some questionnaires and their misleading results when used in ME/CFS research. The classic case of this is the Chalder Fatigue Questionnaire, yet we still see it used even by otherwise respected ME/CFS clinicians/researchers.

    I participated in an online piece of research by a PhD student earlier this year that used multiple questionnaires with the stated purpose of finding out the impact of emotions on CFS, IBS and FM in older adults, and which it seemed clear to me would provide masses of data, but no useful evidence of anything. As a result I wrote to the research student and his supervisor, see this thread

    We see most weeks more poor quality research on a range of diseases without biomarkers, and even on some with biomarkers, where questionnaires form the basis of inappropriate conclusions.

    I'm getting seriously fed up with all this junk being imposed on us and millions of other sick people, and the whole field of research that goes merrily on churning out PhD's and papers based on nothing more than handfuls of allegedly 'validated' questionnaires and the data from them being shoved into stats packages, often using tests inappropriate for the data type, cherry picked results to suit the researchers prejudices, and the inevitable conclusions drawn that attribute disease to character flaws, and recommend yet more psychological therapies to 'fix' us.

    So I decided I needed to let off steam about this in a non constructive way, and invite others who are equally angry and fed up and sad about this whole situation to use this thread to let off steam about whichever questionniare is driving you nuts.

    If you want to do a serious analysis of what is wrong with a questionniare, best do it on another thread. This thread is for making fun of questionnaires, writing silly answers, letting off steam...

    There is also a serious side to this thread. By pointing out just how silly and inappropriate some questionnaires are by writing silly answers, we can perhaps get a clearer handle on why those questions are inappropriate, and will elicit an inaccurate reflection of ME/CFS and of any individual's state of health.

    So take any quesionnaire you like, and tell us the answers they bring to mind, the things you might be tempted to write to point out the stupidity...
    And then maybe join a serious thread about that questionnaire and help us write papers and letters to journals and rapid responses and getting them published to try to bring about change.
     
  2. Trish

    Trish Moderator Staff Member

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    This thread was triggered by another thread here
    https://www.s4me.info/threads/predi...-covid-19-disease-2022-cristillo-et-al.28953/
    And this questionniare and some witty responses:
    I felt like going through that questionnaire too, and adding my silly/not so silly answers, but didn't want to clutter up a serious thread when the point had been well made by TiredSam and others.

    So here's my letting off steam answers:

    1. I feel down hearted and blue.

    When I'm feeling down hearted and blue,
    My therapist knows what to do:
    A hot cup of tea
    Some cool CBT
    And I'll be in the pink just like you.

    2. Morning is when I feel the best.
    Morning has broken...
    ... and so have I ...

    3. I have crying spells or feel like it.
    It's my party and I'll cry if I want to.

    4. I have trouble sleeping at night.
    And you've told me I'm not allowed to sleep during the day. So when shall I sleep?

    5. I eat as much as I used to.
    None of your damn business.

    6. I still enjoy sex.
    When did you stop beating your wife.

    7. I notice that I am losing weight.
    But you're wrong, I'm not losing weight, so how can I notice it.

    8. I have trouble with constipation..
    No, I just love constipation...

    9. My heart beats faster than usual.
    It goes boom boody boom...
    I must be in love...

    10. I get tired for no reason.
    ME/CFS IS NOT TIREDNESS. Shall I shout it louder. ME/CFS IS NOT TIREDNESS.

    11. My mind is as clear as it used to be.
    I can't remember...

    12. I find it easy to do the things I used to.
    I used to attend Adelaide University. I find it quite hard to do that now as I it's 12,000 miles away. I would also find it rather difficult to breastfeed my children - they might object.

    13. I am restless and can’t keep still.
    This questionnaire is worse than ants in my pants.

    14. I feel hopeful about the future.
    Not really - too many wars and climate change happening.

    15. I am more irritable than usual.
    I wasn't until you asked me to fill in this dumbass questionnaire.

    16. I find it easy to make decisions.
    Yeah, great, if I knew the answer to this question I'd tell you, so I'll just leave it blank.

    17. I feel that I am useful and needed.
    Yeah, really needed to fill in your damn fool questionnaire to feed your ego and career.

    18. My life is pretty full.
    Mmm. Let's see. It takes me hours in the morning just to wake up and get breakfast, so yes, my days are full of surviving.

    19. I feel that others would be better off if I were dead.
    Yep, no more need to pay my pension and disability benefit. That's another nought point something of a penny more for everyone else in this benighted country.

    20. I still enjoy the things I used to do.
    Really - what do you think?
    I'm sick, damn you, I'm not depressed. At least I wasn't until you started asking me damn fool questions.
     
    EzzieD, obeat, Kalliope and 23 others like this.
  3. BrightCandle

    BrightCandle Senior Member (Voting Rights)

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    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?!
     
    Yvonne, alktipping, Lilas and 6 others like this.
  4. Hubris

    Hubris Senior Member (Voting Rights)

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    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.
     
    Last edited: Aug 29, 2022
    EzzieD, MeSci, BrightCandle and 20 others like this.
  5. cassava7

    cassava7 Senior Member (Voting Rights)

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  6. Trish

    Trish Moderator Staff Member

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    Thanks Cassava. We could probably do with a serious thread on that research paper.

    Hubris I'm really sorry you have had such a difficult journey with so many medical missteps.

    My story is the opposite. Diagnosis in 1990 and 32 years of bad advice and medical neglect. I don't think anyone has ever asked me to fill in a questionnaire, though 2 GP's clearly diagnosed depression on the basis of a couple of minutes conversation. One prescribed antidepressants which I gave up after 1 dose caused severe nausea, the other prescribed CBT which was harmful.
     
  7. hellytheelephant

    hellytheelephant Senior Member (Voting Rights)

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    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:banghead::cry::slugish: IMG_20220829_152019.jpg
     
    Snow Leopard, EzzieD, Hutan and 9 others like this.
  8. Trish

    Trish Moderator Staff Member

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    I agree that questionnaire is nauseatingly nasty, Helly. It looks like it's designed to diagnose the sufferer as catastrophising, and justify therapy where you'll be told not to catastrophise, and instead to think beautiful thoughts and practice gratitude and all that blah blah blah.

    Edit: if it were take at face value as a way of gauging how severe the person's pain is in order to decide whether to increase the dose of pain relief medication or try a stronger variety, it could be useful. But such is the state of chronic pain research in the hands of the psychs that we inevitably suspect the worst gaslighting motives.
     
    Mithriel, Yvonne, rainy and 8 others like this.
  9. hellytheelephant

    hellytheelephant Senior Member (Voting Rights)

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    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!
     
    Snow Leopard, Yvonne, rainy and 7 others like this.
  10. JemPD

    JemPD Senior Member (Voting Rights)

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    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.
     
    Mithriel, EzzieD, MeSci and 11 others like this.
  11. rvallee

    rvallee Senior Member (Voting Rights)

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    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.
     
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  12. TiredSam

    TiredSam Moderator Staff Member

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    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.
     
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  13. shak8

    shak8 Senior Member (Voting Rights)

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    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.
     
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  14. NelliePledge

    NelliePledge Moderator Staff Member

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    Brilliant @Trish feel like you’re channelling Graham with your combo of poetry and his bete noire dodgy questionnaires :hug:
     
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  15. Creekside

    Creekside Senior Member (Voting Rights)

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    What would a questionnaire about the usefulness of questionnaires show?
     
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  16. rvallee

    rvallee Senior Member (Voting Rights)

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    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.
     
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  17. JemPD

    JemPD Senior Member (Voting Rights)

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    lol love that idea:D.

    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' :rofl:
     
    Last edited: Aug 30, 2022
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  18. rainy

    rainy Senior Member (Voting Rights)

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    @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.
     
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  19. Trish

    Trish Moderator Staff Member

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    That's awful, rainy. No way to treat a sick child. It's horrifying how insensitive psychologists can be.
     
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  20. bobbler

    bobbler Senior Member (Voting Rights)

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    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.
     
    Last edited: Aug 30, 2022

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