UK Planned study: Feasibility of investigating VO2, HR, BP, lactic acid and activity of pwME during normal daily activity, 2020/21, Clague-Baker et al

JemPD said:
On the subject of cognitive testing. I recently started online banking.... I have terrible problems with it. I have my passwords written down (in code so that only I know what they are) but the security questions ask for digits from my password & security number out of order, and you have to put it in quite quick (it seems to me) otherwise it times out & you have to start again. Also if you are not fast enough to do whatever action you wanted to take while logged in, it logs you out & you have to start the whole sign in process again. I cant do any of it fast enough, keep getting logged off, & then making so many mistakes while logging back in that I get locked out & have to ring for assistance/reset my security details - which simply makes the problem worse!

I cant make it work, it is almost impossible to enter, for example, the 2nd, 4th, 1st digits from a memorised four digit pin, I simply cant remember the digits in the wrong order, I cant do it & I get it wrong again & again, & then selecting digit 5, 6, 11 of a password... it's impossible to do these 2 things on the same page before it times out.... and that is at my best, it couldn't even be attempted if I was in significant PEM.
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Jem, I have a similar problem so now I use notepad all the time, think is with windows 10. Before you go on line put the numbers with the letters next to it with a space between so it is easy to see. It will be much quicker to run your eye down the column than work it out.

I can't remember things from one document to another so when I have to, say, pay a credit card bill, I copy the details one into notepad then when I open my bank account to pay I just copy it over. I was finding both accounts were timing out as I tried to remember details.

I also use it if I want to make an order or even if I am phoning family and want to tell them things I make a list. It is a simple program so there is no fuss round the edges which stops me seeing things properly.
 
ladycatlover said:
When @Graham was looking into making a cognitive test I suggested he looked at the Stroop Test.

I've tried doing this test, and it's mind bogglingly difficult! :rofl: I bet ME/CFS patients will do worse than the general public. Not much use for colour blind people though.
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I've spent quite a bit of time on this, and was getting near to testing our final ideas for a diagnostic cognitive test out here, but e-coli infections have set me back. I'll be resting awhile, but get back to you sometime.

Initial results are quite promising.
 
cassava7 said:
For example:
1. a = 2*30 + 50 - 45
2. b = 60 - 15
3. c = 30*b - 4*a + 40 - 20
4. d = 2*c - 3*b + 125
etc.
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I couldn't work any of that out on the best cognitive day of my life, before I even got ME! :rofl:

One of the reasons cognitive dysfunction is difficult to measure is that it's about the subtle falling apart of very basic skills. It includes things many women who've had severe PMS will recognise – you can no longer go through a doorway without colliding with the frame, you do absurd things like losing the meal you've just cooked*, you're unable to string a sentence together either verbally or on paper, and tiny adverse events like spilling a bit of juice on your top leave you tearful, or furious, or in despair. The 'ME Moments' thread is full of them.

I don't even know whether it'd be helpful to try and measure it? In my experience at least, I either have it or I don't; the actual level of dysfunction doesn't vary nearly as much as my ability to do physical things such as sit up for X number of hours or take X number of steps. There isn't a clear onset and end to it, either, so measuring the length of time it persists would also be hard. It only becomes apparent when I try to do something requiring cognitive competence, and because I'm also likely to be in PEM, I'm usually trying to do as little as possible!

Really interested in others' perspectives on it, though – your experience might be very different.


* I was carrying a plate of food from the kitchen to the sitting room when someone rang the doorbell. I had to find somewhere to set down the very hot plate whilst I answered it, and the door to the under-stairs cupboard was open. I put it on the empty shelf in there...took me two days to find it again. :laugh:

ETA: deleted superfluous 'even'.
 
Sometimes I can do the math, but my working memory is shot, so I forget pretty much instantly anything which isn't right in front of me.

Often in the process of working something out.

Makes the descending 7s test virtually impossible (as in order to be successful at least 4 things need to be in active memory simultaneously, which is more than my brain does these days.

Real world example, trying to move a mirror, 7 inches to the right, in millimeters, with both the measurement between the fitting holes, and the old screw holes in front of me.

Every time I decided, and measured, I got a different result for where to bore the second hole, varying as much as 6cm.
 
adambeyoncelowe said:
A good thing to bear in mind is that we can sometimes pull it together for short tests. It was an MS study, I think, that showed short-term tests can be compensated for, so they don't always capture everyday function.
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Yes, this. Even though I’m severe, since starting some meds, as long as I’m not in Significant PEM, I’m able to have a clear and coherent conversation with people (even though I don’t say what I want to say.. and get a bit jumbled.. but to the outside it doesn’t look like that) if it’s kept very short. It takes so much energy but I can manage it. But if you ask me to repeat that in a short space of time, that’s when things get bad. Or to carry it on for longer.

I can still do some mathematical tasks relatively well, even some of the uni level maths I did before (I had a look at some of it & I found I could follow some), but ask me to keep doing them for a longer time or repeat it or do harder stuff - I’ll flounder. It’s tough because it’s easy for people to say you don’t have cognitive difficulties even when you do - it just shows differently.
 
cassava7 said:
What about a sequence of 10 *randomly generated*, basic calculations, where each calculation depends on the result of one or two previous calculations? It wouldn't even have to include divisions, just {+, -, x}. Definitely breaks predictability!

For example:
1. a = 2*30 + 50 - 45
2. b = 60 - 15
3. c = 30*b - 4*a + 40 - 20
4. d = 2*c - 3*b + 125
etc.
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As a former maths teacher, I would observe that many of my young, fit, healthy students wouldn't have been able to cope with that unless they could write down their answers in stages and check them on a calculator. And even the best students will make random slips, meaning if you slip up on question 1, the rest are wrong. Marking maths exams was tedious because we had to check whether the rest of the sequence of operations had been carried out correctly using the wrong answer in Q1, and award marks for method.

I think the point of cognitive testing is not to see how good someone is at something like mental arithmetic, but to test whether their memory, concentration and reasoning decline quickly on a single test, and whether they are worse at the task and decline faster during PEM.

I would suggest using standard established tests like the stroop test and tests of recall of sequences of numbers that are easy to administer and analyse and can be repeated with the same person at different times without being confounded by the effect of improving with practice.

Edit to add: I used to enjoy doing 16x16 sudoku puzzles. I could tell when I was slipping into PEM by the number of mistakes I made. I could stare at a square, even on a smaller 9x9 sudoku, for ages and not work out that I had two of the same number in a square. I've had to give them up, not so much because of the concentration problem, but because my hand won't go on writing in the numbers without getting increasingly painful and weak. Handwriting is one of the things that declines rapidly for me.
 
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cassava7 said:
What about a sequence of 10 *randomly generated*, basic calculations, where each calculation depends on the result of one or two previous calculations? It wouldn't even have to include divisions, just {+, -, x}. Definitely breaks predictability!

For example:
1. a = 2*30 + 50 - 45
2. b = 60 - 15
3. c = 30*b - 4*a + 40 - 20
4. d = 2*c - 3*b + 125
etc.

Then the test is delivered without and with PEM. In both cases, count the number of calculations achieved on the test, or that done before reaching 3 errors. Or multiple simple statistics like these ones.

With PEM, I don't think one could make sense of the calculations. If you still manage to do some of them, brain fog from PEM would seriously hinder performance: the lack of attention makes it easier to get one calculation wrong and the lack of concentration makes it easier to lose track of calculations.

ETA: another option would be to remember and recite short text excerpts from books, where each excerpt is randomly sampled from a different book each time.
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I think if I was allowed to write things down, ie what a is and what b is, I could do this unless in significant PEM and had a severe migraine & extreme exhaustion and eye pain. Without writing it down though, I agree I would get lost.


JemPD said:
On the subject of cognitive testing. I recently started online banking.... I have terrible problems with it. I have my passwords written down (in code so that only I know what they are) but the security questions ask for digits from my password & security number out of order, and you have to put it in quite quick (it seems to me) otherwise it times out & you have to start again. Also if you are not fast enough to do whatever action you wanted to take while logged in, it logs you out & you have to start the whole sign in process again. I cant do any of it fast enough, keep getting logged off, & then making so many mistakes while logging back in that I get locked out & have to ring for assistance/reset my security details - which simply makes the problem worse!

I cant make it work, it is almost impossible to enter, for example, the 2nd, 4th, 1st digits from a memorised four digit pin, I simply cant remember the digits in the wrong order, I cant do it & I get it wrong again & again, & then selecting digit 5, 6, 11 of a password... it's impossible to do these 2 things on the same page before it times out.... and that is at my best, it couldn't even be attempted if I was in significant PEM.
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Weirdly, I’m ok with this. I don’t know why. My memory recall for certain things is as good as it’s always been, I still remember telephone numbers off by heart. I can remember strings of numbers and words/phrases and pick up random points on it. Maybe my distraction levels have increased though so I get even more easily distracted though. This is why I think it’ll be hard to do cognitive testing for people with ME, maybe will need to do multiple types of tests to get to the issue. I definitely do have cognitive issues with ME.
 
lunarainbows said:
My memory recall for certain things is as good as it’s always been, I still remember telephone numbers off by heart. I can remember strings of numbers and words/phrases and pick up random points on it.
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My memory recall isn't really the problem - if it's a number I've memorised previously then I can remember it unless I am very bad indeed - when I cant even remember my date of birth. It's the selection of digits & the actual inputing of them accurately, within a given time limit, that's the problem for me. So I make a LOT of errors & seem to put numbers & letters in the wrong order (I was not dyslexic prior to ME or anything) it's like being very drunk where I just cant do it competently, quickly enough. When I try to go fast enough I get it wrong so I either get locked out because of inputting incorrect info, or it times out because I couldn't do it fast enough. And selecting the digits in the wrong order, like when it asks for the 4th, 1st, 3rd digits of a 4 digit pin... a pin I know very well, I just cant do it, it's like doing that old childs game of patting my head while rubbing my tummy simultaneously - it requires too much concentration.

And yet you are much sicker than me Luna, perhaps it just depends on what you could do before the ME & possibly which areas of the brain are involved. It's as you say prob a good idea to do different types of test.
 
JemPD said:
My memory recall isn't really the problem - if it's a number I've memorised previously then I can remember it unless I am very bad indeed - when I cant even remember my date of birth. It's the selection of digits & the actual inputing of them accurately, within a given time limit, that's the problem for me. So I make a LOT of errors & seem to put numbers & letters in the wrong order (I was not dyslexic prior to ME or anything) it's like being very drunk where I just cant do it competently, quickly enough. When I try to go fast enough I get it wrong so I either get locked out because of inputting incorrect info, or it times out because I couldn't do it fast enough. And selecting the digits in the wrong order, like when it asks for the 4th, 1st, 3rd digits of a 4 digit pin... a pin I know very well, I just cant do it, it's like doing that old childs game of patting my head while rubbing my tummy simultaneously - it requires too much concentration.

And yet you are much sicker than me Luna, perhaps it just depends on what you could do before the ME & possibly which areas of the brain are involved. It's as you say prob a good idea to do different types of test.
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Yes I know what you mean, I have the same websites too with my bank! I’m able to do it quite easily for some reason. (I can’t do the head and tummy thing either though! :p)

I think that’s it as well. What you did before ME and the capability before, and what parts of your brain are involved. Maybe that part of my brain was used to those kinds of things before so I don’t struggle as much now. When not in PEM and as my ME improves I can do things again that I did before - even though physically still severe - a few weeks ago I read a new hardback book in a few days.

but with PEM I definitely can’t read like that. I have issues reading books then. And a year or so ago, I couldn’t even read one page as I had awful symptoms when reading.

So it must have affected some parts of my brain. Meanwhile parts of my brain that didn’t work so well before (like not being able to know what is left or right, not being able to read a map at all, holding a plate vertically and having the food slip out, having no balance and bumping into people and things and apologising to lamp posts, putting things in wrong places..), seems to be even more abysmal now...
 
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It took me many, many years to be able to remember my internet bank sign in details.

I kept them on pieces of paper on notice boards, the original letter, and more recently in a text file in a secure partition on my NAS.

Unless I have something to read in front of me then picking out digit x out of 6 can be a problem sometimes, even remembering it I still have a habit of simply entering the first 4 digits

I still occasionally forget, and the risk is increasing - largely down to my new phone having fingerprint security - just touch it and it does all the remembering for me,

Which is all fine and dandy, and quite convenient, but only one of my devices has fingerprint recognition.

Most of the time, due to the different security, I can no longer log in via a browser.

Some stuff can only be done via a browser, like set up a new payee (?).
 
Trish said:
I would suggest using standard established tests like the stroop test and tests of recall of sequences of numbers that are easy to administer and analyse and can be repeated with the same person at different times without being confounded by the effect of improving with practice.
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Ooh. I did the stroop test online and on the first screen when the colours matched the words I said it out loud in 16.609 seconds, then when colours didn’t match words it took me 21.858 seconds. So I took longer!

https://faculty.washington.edu/chudler/java/ready.html

But I don’t know if that’s significant or if it really captures the cognitive issues I have either and whether there would be variation in the population?. is there any research about the cognitive issues of ME?
 
I think this could be got around by looking at cognitive activity at baseline, vs when in PEM (but then there’s the issue of how to get people in PEM?, and that won’t always be safe, especially for people who are more severe, being in PEM isn’t good).

maybe I’m just complicating things now.

Anyway, I’m very excited and happy about this study. :)
 
Trish said:
Physios for ME have announced a new study led by Dr Nicola Clague-Baker and funded by the MEA Ramsay Research fund.

Full title of study:

“Feasibility of investigating oxygen consumption (VO2), heart rate, blood pressure, lactic acid levels and activity levels of people with Myalgic Encephalomyelitis during normal daily activities.”

Physios for ME announcement:
Physios for ME secure funding for research

MEA announcement:
ME Association Research: New study to measure physiological changes in daily activity in people with ME


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Hi all
Thank you so much for all your comments. I have been teaching all week so didn’t realise there wer so many comments coming through. I will try and read them all as soon as I can and try to consolidate your suggestions. Keep them coming it is all invaluable.
Thanks again
Nikki
 
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