Cognitive Functioning in People With CFS: A Comparison Between Subjective and Objective Measures

[alex3619]

I think my worst cognitive moment was to leave my home without my keys, wallet or phone.
I couldn't get in my home, I couldn't phone anyone, and I couldn't go and get drinks or food or sit in a cafe because I didn't have my wallet.
Luckily it was late afternoon, and I only had to wait a couple of hours until my flatmate returned.

Doh, I try to guard against that by carrying two sets of keys, one set hanging around my neck. I would have to forget both, or lose both, to be caught outside. It doesn't hurt either that I have to use a key to lock my front door, its not auto-locking.

 

[MeSci]

I now keep my keys on a lanyard around my neck if I think I might need them ... so I don't have to go looking for them in a hurry.

I bet you do still go looking for them though, as I do for my glasses when I am already wearing them!

 

[MeSci]

I hid something on purpose in the house 2 weeks ago, I hid it very well because I haven't been able to find it since. I have no idea where I hid it. I obviously chose a place that I have never put it before and that was a big mistake.
It's a mystery.

I have a weird habit of apparently hiding things from myself. I think it may be partly to try to break routines/habits/mild OCD tendencies, so I put things in a different place from usual to show myself that I can break habits. I now try to remember by telling myself out loud that I have done it!

Methinks some of these posts would suit the Classic ME moments thread.

 

[alex3619]

I bet you do still go looking for them though, as I do for my glasses when I am already wearing them!

If I don't have the lanyard on, I can indeed waste time looking for it. When its on I don't have an issue for some reason ... unlike my glasses that I used to lose even when I was still wearing them. Now where did I put them ...

We have problems with concentration and memory. I don't see things unless I am looking for them. If I am looking for the right something I often find it. If my brain insists the book I am looking for has a blue cover I will not see it even if its right in front of me, with a yellow cover.

How are these kinds of subtleties picked up by standard cognitive testing?

I also stopped wearing my glasses. My eyesight is highly variable anyway, but the real issue is even if my eyes see the image, my brain does not always relate to it.

 

[aimossy]

This thread reminds me of a standardised test/assessment I used to carry out with patients in a couple of different places/settings....god too long ago for me to remember a lot. It was the Rivermead Behavioural Memory Test. I may even have the name up the wop now. I work on gists and instinct these days so bare with me.
One setting I used it in was an older persons ward. So you could have patients with short term memory loss on a light level all the way through to mild Dementia to severe dementia or Alzheimers sometimes we would get patients with Alcoholic Dementia called Korsikoffs(I know I have spelled that wrong). There was also patients with Mental health diagnosis as well.
So you are left with suspected memory issues affecting everyday activities of daily living functioning.
In order to assess that, the Rivermead Test was extremely useful at showing up issues with working behavioural memory and doing tasks and remembering them. Especially if the patient wasn't keen on doing any actual things like cooking with me for me to help assess their safety....theres quite a bit involved in cooking a meal cognitively and physically which we all know too well about. Patients often would agree to this test if they didn't want to do the other type of stuff.

It was standardised so there were ranges of scores you can also compare to what was known to be normal scores, I don't know if its still used a lot and I am sure specific areas of cognition were being analysed within the test.
Long story but if I had someone do that assessment on me I would score under normal on it....and score even worse if PEM was happening.
I think that these cognitive issues can be picked up with testing and not just within this type of assessment but I guess you would always have the argument of people faking I hear you say!
Anyway that's just an old experience Ive had in the past. Im exhausted now.

There is the possibility I have even mixed up old assessments there, hopefully not or I have made an egg of myself.

 

[aimossy]

I should have said that the test required you to do tasks within it and also remember things and tasks after time periods I cant remember much else but you probably could find it on google, just thought of that if anyone was keen to know about these things. Might come across standardised tests in the process. There is bound to be updated newer versions with different name.

 

[MeSci]

There is the possibility I have even mixed up old assessments there, hopefully not or I have made an egg of myself.

Never heard that expression. It brings to me an image of you hatching and being cured!

I have not imagined a cure that way before, but have pictured it as a butterfly emerging from a cocoon. Nice thought.

 

[aimossy]

Haha NZ slang words....geeze I have been plonking them on here lately.
I forgot to say that these working memory issues were often well hidden except to family and patients often not wanting to show limitations either as you could imagine. This is what made this type of assessment so significant you really could find it and see it well. I guess that might have been the point I was trying to make. Some acquired brain injury assessments, standardised functional memory type assessments might be useful as well especially ones looking at attention and concentration, we posted at the same time alex.

 

[aimossy]

The fact that they have found the speed of our cognition to be slower is actually a really big deal in my mind.......
If they can prove that very objectively that has huge implications in overall cognition and daily functioning.
I mean we can all feel our cogs being gluggy can't we?
I will have to find a thread on that research tomorrow!!!!

 

[Snowdrop]

I hid something on purpose in the house 2 weeks ago, I hid it very well because I haven't been able to find it since. I have no idea where I hid it. I obviously chose a place that I have never put it before and that was a big mistake.
It's a mystery.

Won't you have a pleasant surprise when you accidentally find it.
I've done this too. I think I've even found previously hidden things while looking for a new hidden item.

 

[Izola]

I hid something on purpose in the house 2 weeks ago, I hid it very well because I haven't been able to find it since. I have no idea where I hid it. I obviously chose a place that I have never put it before and that was a big mistake.
It's a mystery.

Rosie: I think you stored it at my place. Was it a surprise pillow case, a little stash of cash, a gallon of frozen milk, or a candle still in its box on the floor ?

 

[Izola]

The fact that they have found the speed of our cognition to be slower is actually a really big deal in my mind.......
If they can prove that very objectively that has huge implications in overall cognition and daily functioning.
I mean we can all feel our cogs being gluggy can't we?

I will have to find a thread on that research tomorrow!!!!

I think my doctor published that. She didn't read the CCC. Doesn't believe anything over a page long can possibly be scientific and she keeps pushing me out the door after I pay. Like I can't take a hint . . .

 

[Izola]

I might forget to use it, forget to turn it on, use the wrong buttons, or just never get around to using it. I would have to stop what I am doing to use it, find it - especially if I put it down somewhere that was not obvious; pick it up, switch it on, then remember what I was going to say after all that, then put it back somewhere sensible after I have used it. I have a small text file on my computer screen, right in front of me, and I forget to use it a lot. I now keep my keys on a lanyard around my neck if I think I might need them ... so I don't have to go looking for them in a hurry.

The keys thing is a smart thing. When my son was 9 or 10 (way before M.E). he pounded a nail beside the door and told me I couldn't come in unless I hung the keys. (cheeky kid) Now I have a hard time finding the wall. I would test as a vegetable if they tried to test me.

 

[Sean]

I have a spare house key stored outside in a safe place, and frequently remind myself where it is. Also gave a spare key to an old friend, who usually stays at my place on the rare occasions I travel.

 

[Antares in NYC]

It would be good to see the full paper to see for example how the people with CFS were diagnosed, and other selection criteria. At least the authors acknowledge that

I wonder what these 'different constructs' are that they refer to.

I wonder what results they would get from this study if they added a timer to each task and question on the tests.
People with CFS has issues with delayed response and recollection of memories. They get from A to B, but it takes much longer than for people without the syndrome.
Same thing if they added multitasking to the mix. I'm willing to bet that the differences between CFS and controls would be abysmal.

 

[Izola]

I have a spare house key stored outside in a safe place, and frequently remind myself where it is. Also gave a spare key to an old friend, who usually stays at my place on the rare occasions I travel.

I think everyone who lives in this building has a key to my place.

 

[Izola]

I wonder what results they would get from this study if they added a timer to each task and question on the tests.
People with CFS has issues with delayed response and recollection of memories. They get from A to B, but it takes much longer than for people without the syndrome.
Same thing if they added multitasking to the mix. I'm willing to bet that the differences between CFS and controls would be abysmal.

 

[Izola]

I wonder what results they would get from this study if they added a timer to each task and question on the tests.
People with CFS has issues with delayed response and recollection of memories. They get from A to B, but it takes much longer than for people without the syndrome.
Same thing if they added multitasking to the mix. I'm willing to bet that the differences between CFS and controls would be abysmal.

I bet most don't remember that C comes after B. I'm in the they group. Iz

 

[MeSci]

I wonder what results they would get from this study if they added a timer to each task and question on the tests.
People with CFS has issues with delayed response and recollection of memories. They get from A to B, but it takes much longer than for people without the syndrome.
Same thing if they added multitasking to the mix. I'm willing to bet that the differences between CFS and controls would be abysmal.

Good ideas, but they would need to take into account the stress factor. For example, I get extremely stressed by time pressure (as well as knowing that someone is observing me when I am trying to do something!). People with ME seem to be more prone to struggling to cope under stress.

 

[Dolphin]

Was this different to this study?
http://www.ncbi.nlm.nih.gov/pubmed/23527651

Same number of patients and controls, but they found :

The CFS group showed impaired information processing speed (reaction time), relative to the controls, but comparable performance on tests of attention, memory, motor functioning, verbal ability, and visuospatial ability

.

They're the same people.