Are objective outcomes of cognitive function possible?

When I was severe ( before becoming very severe) I said I was dementing. The strange thing was that between the episodes I could for instance not even remember how to make tea, I mentioned it to medical trained people and the response was: you are not. So between flares I seemed to have no big cognitive problems.

In my case the cognitive sympoms fluctaded with the severity of the flare. Still do but lately I have noticed if I rest my eyes when they become to tired it stops becoming worse and even get a bit better.

 

Visual processing, spatial awareness and short term verbal memory are all impaired for me. There is also a very significant dip when experiencing PEM.

 

I think they are tailoring the "market" for health services so that more and more people, with all sorts of health problems, can be categorised as mentally ill rather than physically ill. Insurance companies limit how much money they give to people with mental health problems, whereas anyone with a physical health problem has to be supported financially, possibly for life. In the UK we still have the NHS, but the government wants to cut the cost of treating as many people as possible. If/when the NHS folds and we all have to buy insurance, then the insurance companies won't cover people for very long with mental health problems (if at all).

All health conditions which have been declared to be "Medically Unexplained Symptoms" are more common in women, and of course, doctors are taught from the start that women are anxious, attention-seeking, hypochondriacal liars. The whole system is geared up to minimising the people who are getting treatment, and this has been true for 30 years now. And since women need more treatment, they have to be denied in any way that can possibly happen.

Edit : And isn't it nice for the BPSers? The government and insurance business want something that happens to be very good for the careers of psychiatrists.

 

I think you're right Arnie.

And also with the changes in employment we're seeing, where more and more people end up being self-employed, these people don't qualify for sickness benefits if they are ill.

So with this change in employment practices, there will be fewer people for governments to pay out for when they are sick and those who are self employed will be encouraged by health insurance companies to take out private health insurance.

Unfortunately, people will think they are then safe but unbeknown to them, these companies won't pay out for a wide range of conditions.

 

In what way, @Invisible Woman? Can you give me some real life scenarios that have stumped you when you've had PEM?

 

I can remember not being able to process walking past some one coming the other direction. Academically I knew the 12 foot wide path was plenty of space for us to pass, but as the other person got closer my head froze. I couldn’t walk and judge the distance between us as the same time. I stopped and waited til they went past. I was only walking a few metres.

 

Short term verbal memory: I can forget what I'm talking about as I'm speaking. It can be as bad as forgetting the first part of the sentence before I reach the end. Sometimes I remember the first part of the sentence, but not a clue how to finish it. It's like trying to join matching magnetic poles on magnets floating in water. It's not just forgetting a word though I do that too.

Visual processing: Passing a field of cows in the car I was shocked to see these freakishly small cows - couldn't process that they were calves. I could only think they were some kind of dwarf breed but I knew that was wrong. It lasted maybe 15 seconds. (Not me driving btw!)

Not sure what you'd call this but minor decision making: Couldn't decide in a store between 2 kinds of plastic box for my daughter to take her lunch to school in. Either would have done, it wasn't important. Couldn't decide. I spent a good 15 minutes trying, getting worse the whole time before realising I needed to abort. Energy draining out of me I thought some chocolate might give me a quick boost to get home (plus treat the children). Couldn't decide which chocolate and feeling quite panicky now I told my daughter to choose for me.
We then walked home passing the taxis. I had no brain to think of taking one. It's a wonder we got home.

Any of that useful?

 

Recognize @Keela Too's and @Skycloud's descriptions.

Spatial awareness: missing shelf, table, countertop when trying to put an object down. Missing an object I'm trying to pick up - and knocking it over instead, especially if contains liquid , unable to walk though doorways without bashing into the frames

Visual processing - anything too fast moving or too close up - you know some of these "artistically" directed films? That becomes significantly worse. I will become , temporarily, dyslexic with letters and numbers and completely misread things. If you put a range of items in front of me, I would probably struggle to select a specified item.

Short term verbal memory - my husband will tell me something: let's say what he plans to eat. As soon as he's finished the sentence, I'll ask him what's for dinner. The dog will be off to the vets & he'll discuss what he's going to say to the vet. Within minutes I'll be asking him not to forget to mention stuff he's just told me he was planning to discuss. Making an appointment: I'll check the calendar to see what the best day would be, walk a couple of feet o the phone, realize I've forgotten the date I just looked up.

To be honest PEM hits every cognitive function for me - even sensory processing. Suddenly I don't see as well and I don't mean light sensitivity. I don't hear properly and I even mix smells up.

 

I’ve often thought it would be good to have a study looking at cognitive function in people with ME, head injury and normal controls....
I recognize some of the issues that I saw in TBI patients in myself when I’ve been overdoing things.
Memory, executive functioning, emotional control etc...

 

@Invisible Woman 's descriptions are very familiar.

eta - A lot of posts on the ME Moments threads (here and the classic ME Moments thread on PR) are examples of cognitive dysfunction.

 

My worst cognitive issues are very specific. Sure there is general brain fog, and the overwhelming need to rest my brain on a regular basis. However I have big issues not with decision making, but even remotely understanding how to do something with that decision.

The second is visual spacial reasoning. It might not be unusual to read an ME patient cannot open a plastic bag, but how about an already open plastic bag? I can figure it out with touch, but not with vision.

The third is math. At a good moment I can do a few mental calculations if they are not too hard. Then I start declining in capacity. I have tutored math at a university level in the past. At a bad moment my classic problem is I cannot even count to 3 ... my friends used to kid me about this.

So in addition to general deficits, there are very specific ones in at least some of us. When I was tested using a simple word recall test for possible dementia, I aced it, with an almost perfect score. If I had been distracted though I might have become surprised that there was even a test underway. How I function when focused can be very different to how I function when distracted.

I do think that a cure is likely to at least partially, if not fully, reverse these issues.

 

I too recognise the same experiences as @Invisible Woman and @Skycloud
At my worst I can't hold a thought long enough to think it. It's a bit like walking into a room and not remembering why you're there but much worse. It's the first couple of words in my head of a thought train that I then forget where it's going, and then forget what I just thought. It's like trying to grasp smoke and quite distressing.

I often get a lag in processing such that I add a comment or answer a question after the other person has already moved on to another topic and then what I say makes no sense to them.

@alex3619 I also am skilled in maths and yet often cannot hold 2 single digit figures in my head long enough to be able to add them together.

 

Yep recognise all of these.

Some of the more obvious ones I forgot:

Spatial awareness - cutting myself preparing veg, burning myself in the kitchen.

The decision making thing is a real issue - when that starts I can't even handle a would you like tea or coffee question - even though I rarely drink coffee. Literally cannot process it. Making complex decisions that had potentially very serious consequences (not life threatening) was a part of my job.

Reading - I can usually handle the individual words, but cannot make a simple sentence come together.

Then there's the forgetting how to operate the microwave, main oven, remote control for the TV - all of which I've owned for years.

 

Thanks for creating a new thread. Took me a moment to understand. I thought I must have forgotten to have created a new thread

 

Thank you for creating a thread for this issue, I had wondered about creating a seperate thread on this when it arose elsewhere but did not feel up to the cognitive challenge of working out how to create a thread.

I have noticed that doing new things presents a particular challenge when less well or experiencing PEM. For example I now do all my shopping on line, but unless on a particularly good day I can only achieve this with suppliers I have previously used and items I know. So example I now get groceries and pet food on line, but have not yet managed to get clothes on line yet.

 

Thanks everyone, really interesting and useful. Spatial problems are clearly much more common than I realised. Is it true to say that they mainly occur in situations where you're directly interacting with the environment? Like sort of visuo-motor coordination stuff rather than abstract spatial thought?

I'm wondering whether this is a distinctly different problem from the more abstract cognitive ones. Something sort of "embodied" (by that I mean that physical limitations - maybe lightheadness, vertigo, motor heaviness - may distort the information you receive from your interactions with the world).

But @alex3619's plastic bag example is pretty much abstract spatial reasoning, so maybe I'm wrong there.

Some of the things people mention - losing the thread of your sentence while speaking, not remembering what someone said a few seconds ago - may be hard to translate to the testing lab, because they are likely to be things that occur primarily where there's other competing cognitive demands. @alex3619, this seems to be your suspicion.

@Trish's example of not being able to hold numbers while doing a calculation is a working memory one, which sort of fits with the hypothesis I was playing with. And the inability to make decisions sort of fits with that too.

I'm saddened to hear what people are going through. I'm writing this from bed - as per usual - so my physical situation is really bad. But I don't get the cognitive stuff much at all, and listening to you all, that must truly be the worst of it. The only thing I get is a sort of feeling of intolerance when I've really overdone it, where I want people to stop talking and just leave me in a quiet darkened room. But then it usually passess in an hour or so.

 

Oh, who, out of those who've posted, gets adequate sleep?

Or for those that get adequate sleep only sometimes, how are your cognitive problems on days following the good sleeps?

It just occurred to be that I get 9 hours sleep a night, every night without fail, whatever the cost, even if it takes every chemical I can get my hands on.

That's gonna be a tricky confound to tease apart. I suspect to obtain a meaningful control group, we're going to have to imprison our healthy controls for a few weeks, and prevent them from getting more than X hours sleep a night!

 

Zero to five hours, often broken up into naps and poor sleep quality, is adequate, right? Some of my problems are too specific to be from poor sleep, but much of brain fog is probably made worse by poor sleep.

 

For me, cognitive deficits are much more of an impediment than physical. I don't post much simply because the effort of deciding what word to use next is too much. As I struggle through I feel as if my brain is demanding energy but it isn't available. If I keep pushing my legs start getting achy and I feel the need to constantly flex them.

 

This thread is far too complex for me to read right now but because of how i was diagnosed i went through extensive dementia testing and it does not cover much for ME/CFS. At the results appointment i had to explain why the whole exercise didn't catch what my dysfunctions are, and even for dementia its not very good, it was written by someone who is book smart in my opinion, it tests memory and some executive ability but not rationality, thought processes, mental fatigue, irrational or ridiculous thought processes, patience or realistic planning, not so much.

Inventing a good test for me/cfs severity is very possible, in fact i would be happy to collaborate with anyone who wants to design one (on my good days) but i can't see it being done by anyone.