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

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.

 

That's a very good tip @Mithriel thank you I will try it.

 

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.

 

I couldn't work any of that out on the best cognitive day of my life, before I even got ME!

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.

ETA: deleted superfluous 'even'.

 

I can do the math but the hard part is remembering what 30*b was after calculating 4*x+40. Math ability is OK, but I risk immediately forgetting the numbers I'm supposed to remember.

 

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.

 

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.

 

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.

 

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.

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.

 

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.

 

Does that game apply to adults too? Because I can do it easily. Remembering things is difficult though.

 

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! )

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...

 

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 (?).

 

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.

 

lol really?!! wow I cant do it at all, not even at my best i just cannot make it happen, I could do it without issue pre ME, with some concentration.

 

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

 

Re cognitive testing, there's a whole suite of tests available here:
https://www.cambridgebrainsciences.com/science/tasks
The individual tasks all have a button saying 'Start here for free' but it doesn't work for me, probably some setting on my computer, so haven't been able to test any.