Your neuropsychology testing experiences

BrightCandle

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I did an intake discussion with a Pyschologist for a CFS clinic and they seemed to be digging for some form of trauma that my childhood had introduced. Having not found that they concluded I must just with withholding it. I didn't consider that a reasonable diagnostic mechanism considering they didn't ask me a thing about my symptoms at all so they weren't using any of the criteria that anyone has published about the condition. It is one of those clinics currently saying it wont follow the guidelines NICE published while spouting discredited nonsense in "research" papers and tried to have a media blitz against NICE and the guidance and was part of the cartel that pressured clinicians to resign from the committee.

I found them abusive and frankly think the entire thing needs to be shut down.
 

Pyrrhus

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I think Dr. Lynne was referring to "standardized" neuropsychological testing:

Wikipedia said:
Neuropsychological tests are specifically designed tasks that are used to measure a psychological function known to be linked to a particular brain structure or pathway.[1] Tests are used for research into brain function and in a clinical setting for the diagnosis of deficits. They usually involve the systematic administration of clearly defined procedures in a formal environment. Neuropsychological tests are typically administered to a single person working with an examiner in a quiet office environment, free from distractions. As such, it can be argued that neuropsychological tests at times offer an estimate of a person's peak level of cognitive performance. Neuropsychological tests are a core component of the process of conducting neuropsychological assessment, along with personal, interpersonal and contextual factors.
Source: https://en.wikipedia.org/wiki/Neuropsychological_test


There are two well-known problems with "standardized" neuropsychological testing:
  1. Although it is supposed to be objective, the results are often strongly affected by the subjective bias of the examiner.
  2. Because of individual differences in "intelligence" or innate cognitive ability, the results of testing must be compared to the pre-illness results from the same individual in order to determine any reduction in function. Comparison to a population average is often misleading.
 
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There are two well-known problems with "standardized" neuropsychological testing:
  1. Although it is supposed to be objective, the results are often strongly affected by the subjective bias of the examiner.
  2. Because of individual differences in "intelligence" or innate cognitive ability, the results of testing must be compared to the pre-illness results from the same individual in order to determine any reduction in function. Comparison to a population average is often misleading.
These were exactly the two issues I encountered. The psychologist I saw believed I was depressed, and this colored every aspect of his report. As a result his conclusions glossed over what I thought were relevant findings--in tests of attention, concentration, recall, and working memory I consistently scored below average, as low as the 25th percentile--and instead emphasized his perception of my psychological state.

When I showed the report to my doctor, she just glanced at my overall score and said: "Well, your scores are above average, so there doesn't seem to be any problem!" Plus, since I hadn't had neuropsych testing since I was 10 years old (my neighbor was a psychologist and I ended up in the control group of one of her studies), there was no way to compare apples to apples and prove that my scores really reflected diminished function, nor could they show by how much my abilities had slipped.

Putting on my special education hat, if you do have neuropsych testing it's important to know that the overall scores aren't really helpful (unless you're trying to get into Mensa). What's more helpful is to glance over all of the subtest scores, usually on the last page of the report, and take note of any scores which seem unusually high or low in comparison with the others. In my report most of my scores are clustered around a certain range, but tests of memory and concentration stand out because they are generally over a standard deviation lower than the rest.
 
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Putting on my special education hat,
I'm picturing an attractive mortarboard in a luminous shade of gentle mauve, with a large, 18 karat gold tassel ....
In my report most of my scores are clustered around a certain range, but tests of memory and concentration stand out because they are generally over a standard deviation lower than the rest.
This is helpful information, especially the first part in which your testing Dr was focused (in medical terms, 'anchored') on proving his own thesis rather than providing the patient with useful and helpful information. So it's not just 'garbage in, garbage out', but 'good info in, bad interpretation, garbage out' ....
When I showed the report to my doctor, she just glanced at my overall score and said: "Well, your scores are above average, so there doesn't seem to be any problem!"
Complicating things is a Dr who relies on a botton-line assessment rather than careful parsing of the facts. It's a little like reading a thyroid panel and saying, 'Well, your TSH is fine, so .....'

Thank you for this helpful guidance, even tho it proves once again that we have to know almost as much as out Drs in order to get helpful input or treatment. Saaaaaaad.

EDITED ... for additional detail ....
 
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Woof!

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your testing Dr was focused (in medical terms, 'anchored') on proving his own thesis rather than providing the patient with useful and helpful information. So it's not just 'garbage in, garbage out', but 'good info in, bad interpretation, garbage out' ....

Complicating things is a Dr who relies on a botton-line assessment rather than careful parsing of the facts. It's a little like reading a thyroid panel and saying, 'Well, your TSH is fine, so ......
Soooo well said!

All of this is what terrifies me about consulting new doctors. How focused are they on promoting their pet theories? How prone are they toward making knee-jerk interpretations? And how much do they really listen to what their patients are saying?

What's pending for me now is a neuro referral to Duke U, and this brings up another concern - Ivy Tower syndrome, where the God-teacher complex of certain teaching institution physicians & researchers interferes with them learning from a patient's experience. Plus, I'll never forget being treated like a lab rat by a teaching hospital neurologist in the late 1990s. Sigh. :( I know some terrific teaching hospital physicians, but others scare the begeebers out of me. They'd never make it in a clinical setting.

The entire experience of introducing ourselves to a new doctor is also trying. Yesterday I had an appointment with an MD who specializes in osteoporosis. Just answering basic questions about my complicated health history took so much energy out of me that I was a shell of myself on the ride home. I've got my health history written down so it can be easily handed over, but since new doctors want to hear things from their patients, themselves, I still had to answer lots of questions. It was physically and mentally exhausting...
 
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and this brings up another concern - Ivy Tower syndrome, where the God-teacher complex of certain teaching institution physicians & researchers interferes with them learning from a patient's experience.
This is a standard for pretty much all Drs, it just gets worse as you go up the Prestige Institution ladder, and the higher you get the more God-like most of them perceive themselves to be. It's infuriating and frustrating, especially when you review the mortality rates ....
How focused are they on promoting their pet theories?
Oh, very.
How prone are they toward making knee-jerk interpretations?
Instant Medicine Be Us ....
And how much do they really listen to what their patients are saying?
You know that Larson cartoon of the man lecturing his dog? You know, "Blah blah blah blah Ginger ....blah blah Ginger ...."?
The entire experience of introducing ourselves to a new doctor is also trying.
It's nerve shredding. I admire you for putting yourself thru it. Ive pretty much given up, and live in absolute terror of anything that might shove me, kicking and screaming, back into a Drs office.

Have you ever read anything by Jerome Groopman? He expresses the tendency of most Drs, including himself before he learned better (a patient of his died because he'd mentally dismissed her as a whiner and complainer ....unlike most Drs, he actually learned from it, and never forgot it), to stereotype a new patient within the first 3 to 5 seconds, and then to anchor on that stereotype, which directs the quality and appropriateness of all subsequent dx and treatment.


How Doctors Think was his first book, I think, and also What's The Trouble?. They're worth a peek, if you're up to it.

I'll hold a good thought for your upcoming challenge, @Woof, and I truly do admire you for courageously going thru that yet again ... post back, if you can, and let us know how it went, yes?
 
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good info in, bad interpretation, garbage out
Exactly. I do think that neuropsych testing could possibly yield interesting results, but a lot will depend on who is interpreting them. The good news is that the test report will include a complete list of the numerical scores, which means that you can eyeball them yourself or share them a person you trust with the background to help you make sense of them.

But, as @Pyrrhus noted, without pre-illness testing to compare the results with, it's much harder for someone to make the case that certain scores are due to ME/CFS as opposed to a pre-existing issue. And it's impossible to quantify the difference between where you were before and where you are now.

I'm picturing an attractive mortarboard in a luminous shade of gentle mauve, with a gold tassel ....
Absolutely lovely! However my kids would probably have a grand time yanking on the tassel--this would have to be reserved for meetings, trainings, or working at home.

All of this is what terrifies me about consulting new doctors. How focused are they on promoting their pet theories? How prone are they toward making knee-jerk interpretations? And how much do they really listen to what their patients are saying?
That's what scares me, too! It's like playing the slot machines--sometimes you do get a winner! But a lot of times it's not such a great experience. And it's so hard to know going in who you're going to get. It so much mental preparation and emotional girding of the loins!
 
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Absolutely lovely! However my kids would probably have a grand time yanking on the tassel
Did I mention that it's got a small voltage regulator that releases just the eensy, teensy, tiniest little little bit of a shock. Not enough to hurt them, but just enough so that the next time they look at it, their brain says, "Nyah Uh ....". Just as for The Pavlovian. In mauve .... shipping is free ....
 

Sushi

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Hi again,

If you have had neuropsychology testing done, would you share your experience of the process with the rest of us?

Thank you! :hug:
I took the CNS Vital Signs remote neurocognitive assessment as part of a study. You can do it online or in person (I did it online). As the title indicates, it is strictly a neurocognitive test without a psychological assessment. I felt that it was pretty objective as it tests memory, attention, psychomotor speed, attention. This might be valuable and it doesn't have the element of administrator bias. I was told that this is a pretty standard test. It was grueling to take! o_O
 
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I was told that this is a pretty standard test. It was grueling to take! o_O
I was getting pretty psyched about searching out the test until I got to the above.

I've had to give up 'grueling' for .... well let's see. Lent? Early Lent? Yeah. That one.

Im currently languishing in the 'No más' column, tho I know I'll be back ..... later.

Thanks for posting the info @Sushi !!! It's going to help a lot of folks down the line .....
 

Sushi

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I was getting pretty psyched about searching out the test until I got to the above.

I've had to give up 'grueling' for .... well let's see. Lent? Early Lent? Yeah. That one.
Right! :xpem: It was grueling in that it required unbroken attention for about an hour. A lot of it was clicking on things as fast as you could process them. Not a walk in the park but I was over it by the next day. Insurance generally pays. You can try a demo here.
 

livinglighter

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Right! :xpem: It was grueling in that it required unbroken attention for about an hour. A lot of it was clicking on things as fast as you could process them. Not a walk in the park but I was over it by the next day. Insurance generally pays. You can try a demo here.
Thanks for sharing @Sushi

I'm researching neuropsychology testing on ME patients, as I may need one done, and I came across your post.

The requirement for unbroken attention for an hour is highly concerning. :xpem:

I often can't concentrate for more than a few minutes without immediate crushing fatiguability. I'm worried I don't even have the capacity for such evaluations now. :eek: