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

I noticed that when I'm mentally exhausted due to mental activity, my gait changes and I walk like an old man. It seems to be the mental exhaustion at least (maybe it's also orthostatic intolerance and sitting).

Another great way to produce abnormal changes visible to observers: reaching down as if to pet a cat, waiting for blood to redistribute and then standing up again, waiting for blood to redistribute, and repeating this. In a minute you can turn me from looking normal to someone that's visibly weak and struggles to walk normally.

 

I realise that I have been ‘overdoing it’, if I try to walk the small block with husband and hound, my gait starts to “roll”. This can happen in the evening if I go into the garden whilst husband waters plants too.

 

This is a common problem too:

<a href="https://www.s4me.info/threads/members-poll-orthostatic-intolerance.8980/#post-158689">Members poll - orthostatic intolerance</a>

I hope this link to a different thread works.

Speech on standing still, completely freezes.
I have no idea if this is of any help to you!
Happy to help with anything you need.

 

When I think about cognitive testing I find it has confounding factors that make it tricky to assess.

I'm bored a lot of the time and I do a few Sudoku puzzles almost every day as a distraction. the site for the Sudoku has a timed feature.

I find that my functioning varies from best to worse timed finish by about 7 minutes. My finish time is a function of what time of day, how much I've done prior and what kind of day I'm having in general (did I sleep enough hours to function at my normal), even, am I groggy from medicating with something as simple as an antihistamine.

But I think it might be possible (and can be done from home and reported) that if people do a Sudoku when they know they are at their peak daily functioning (a baseline) and then do repeated sudoku (say 5 or more) in a row you might be able to see a deterioration in the capacity to focus. At least that's what happens to me.

I expect doing this has it's flaws (but I'm about at my limit now for thinking about stuff) so the above just for consideration regarding cog testing.

 

Wondering about the portable VO2 device as shown in the photo in the MEA announcement.



Clearly, getting good data on our oxygen usage during ordinary activity would be highly valuable. Unfortunately it also looks to be a tricky proposition.

Many of us spend most or all of our days either lying on our backs or seated against a backrest. Having an analyser strapped to the back in those positions sounds rather uncomfortable, to put it mildly. Can the device be adapted at all to sit in front instead?

Or is the plan to get people putting it on and off every time they get up? That would probably too much effort for the more severe ones. It would also miss the changes happening between rest and activity for people for whom just sitting up constitutes major exertion, by the time they'd strapped the apparatus on you'd only be able to capture the result of the exertion of it all. Does the analyser unit even have to be attached to the person? I'm thinking of bedbound people who could have it sitting on a bedside table for example.

I do hope those technical problems can be sorted out because it would be extremely interesting to see what happens when we "mildly" exert, especially with severe patients who never be able to get near a CPET machine let alone on it.

 

Perhaps notwhat you were thinking of, @Keela Too, but I remember these (one a thesis) by Nadia Ahmed from Leicester University on visual problems in ME so there might well be potential to objectively measure PEM effects on vision in patients.

Sorry, Don’t have the function to reread for relevance, but maybe youll find them interesting:

Restricted spatial windows of visibility in Myalgic Encephalomyelitis (ME) https://www.mdpi.com/2411-5150/2/1/2

discussed here: https://www.s4me.info/threads/restr...f-visibility-in-me-2018-hutchinson-et-al.2006



Ophthalmic correlates of Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS) https://leicester.figshare.com/arti...is_ME_Chronic_Fatigue_Syndrome_CFS_/10218365#

discussed here: https://www.s4me.info/threads/ophthalmic-correlates-of-myalgic-encephalomyelitis-me-chronic-fatigue-syndrome-cfs.2603/

edit clarity

 

We gave up on diaries a long time ago.
My daughter uses a simple daily phone app which uses emojis, and can be expanded for notes and customised to what you wish to capture. She has an alarm set to remind her to complete it.
This is far far easier than diaries. She also takes photos of what she eats on her phone to form a food diary - far easier.

So perhaps a visually based app ( where multiple symbols could read as a scale ) with key parameters covered and space to add anything missed - those small idiosyncracies. A speech to text function may also improve accessibility.

I don't gave a scientific background, but accessibility is a real issue for most of the NICE patient interactions . If you wish to capture different degrees of severity, then think severe first .

 

I did an online test for dementia, which I think is standard, where you have to remember a string of numbers. There are 10 attempts and you get a score for how well you do. I wasn't very good from the start, but by the 10th question I could not even remember the first number in the sequence.

That sort of deterioration with repetition is a hallmark of ME and should be included in any test. I can play games like knowledge quizzes with the grandkids, but after a short while I can't do it anymore.

My handwriting gets worse and worse as I get down a page and that seems a simple test as well.

Then, as forum posters know, it is almost impossible for many of us to read a block of text without frequent paragraph lines which could be made into a test.

 

I did one in a hospital (memory clinic) about 8-9 years ago.

The only reasons I wasn't diagnosed with dementia, according to the consultant were, my age, the fact that my problems were not constantly above the required severity, and 'high executive function'.

No one disputed the level of impact they had on my QoL and the consultant seemed quite concerned, but only gave a diagnosis of MCI, the first time he came to my home.

 

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! I bet ME/CFS patients will do worse than the general public. Not much use for colour blind people though.

 

I don't think I find this particularly difficult.

On the other hand, I often find threads increasingly difficult to understand now (don't think I did for the first 20-odd years). It seems that the more complicated they are, the harder it is. But it varies a lot over time.

 

rvallee makes a crucial point here. Please, please @PhysiosforME please let us look at it first. In my experience the tests usually delivered in hospitals/by Drs do not capture the problems I face.
The most important thing is that it must not be the same test delivered repeatedly - one of the tests I did asked me to draw a clock, name an amimal etc I found it very difficult the first time, but when it was repeated the next time (after I had been active & was struggling much more cognitively) but the result was better - because this time i understood the test & knew roughly what the answers were. I think the cognitive challenge/test needs to be really thought through & interrogated by sufferers if you want to do it well. - The kinds of problems I have are not the same as a stroke. For example when well rested, if presented with an IQ test I score highly, as long as it's short. in PEM I cant even understand the question..... as long as I haven't seen them before... if I've seen them before when I was well rested then I will know the answer & understand much better. But if you take something very simple when i'm in PEM I wont understand it & even once I have understood it, if you show it me again 5 mins later I wont understand it.
I'm struggling to describe what I mean but what I am certain of is that the tests designed to capture cognitive difficulties in other conditions... they wont work as well for ME without modification. I'm sorry i'm not well enough to explain better, but what i'm saying is please don't just get a test off some physios who are expert at testing cognitive difficulties & use that without running it by us first, as it's unlikely to reveal the problems well, & may mean participants are expending effort for no helpful reason

Yes agree with all that 100% especially the number sequence... when well rested I can remember 6numbers quite easily as long as no distractions - although if there is any kind of sound in the background I cant remember even the first one. When in PEM I cant remember even the first one.

 

The other problem with some tests is that we live with the problem all the time and automatically compensate so we look normal but are not.

As is typical I can't think of an example right this munute, but physically, I don't fail a Romberg test anymore. In this you stand not touching anything and it looks for falling down when you close your eyes, swaying doesn't count. Years ago I would fall down at the test but it got so bad I was dropping when I blinked. My body now automatically feels the floor with my feet so I am always touching something and only fall if I look round or move suddenly and my feet haven't got a good grip.

 

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.

 

This is part of the reason for the feasibility study - to understand whether the equipment is suitable for people with ME (including different levels of severity)

 

Not so easy to monitor, but I would like to see some thought put towards measuring gait or sway as day / pem progresses.

How a pwme signals or reads wether they go left or right when confronted face on to a normal person eg both collide or both step into each other. I assume there is a subconscious lean nod or eye movement that I and others I have observed at ME hospital appointments don’t exhibit.

Personally I also miss the voice drop at the end of a heard sentence and fail to correctly apply one to my conversation. So end up talking over others even over a phone.

All the above substantially worsen as the day progresses and processes become slowed.

 

re cognitive tests, these might be of interest

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2682840/

 

Ragarding problems with gait / motor fatiguability: https://www.s4me.info/threads/objec...lity-lurija-institute.4241/page-2#post-184216

 

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.

 

Remember to track patient's PEM threshold as this is a very important indicator of disability.