Intellect and M.E.

I have mentioned before that one of the most pervasive symptoms of my chronic illness is a form of cognitive dysfunction that makes it difficult to concentrate for sustained periods of time. Of all the neurological, immunological and metabolic symptoms, these cognitive issues are by far the most frustrating. Physical pain and disability would be easier to live with if I could distract myself with creative and cerebral pursuits, but on my best days I am limited to short bursts of activities and on my worst days even simple tasks like watching a film or listening to the radio are beyond my capabilities.

As a university graduate who now struggles with simple cognitive activities it can feel as though my intellect has been destroyed by my illness. Clinical studies however, reveal that IQ itself is unaffected by ME but its effects on processing speed and working memory can be extremely debilitating. Without working memory we cannot choose from a simple list of options or remember the logical order of actions needed to complete a task.

While people with ME can generally access knowledge that they learned before falling ill, they lose the ability to retain new information easily. This has certainly been my experience of living with the illness.

Encouraged to take up knitting for physiotherapy, I had no difficulty remembering the single basic stitch I’d been taught as a child but attempting to learn a new stitch proved an unexpectedly monumental task. Numerous times over several years, my mum patiently demonstrated the same simple action. I would seem to have mastered it every time, until I paused to sip my drink however, or attempted to alternate rows of different stitches, at which point the stitch would be wiped from my working memory and my long-suffering mother would have to show me all over again.

A few years ago, being too ill to work, I decided to attempt some distance learning to build up my CV in the hope of future employment. The logical step would have been to build on my undergraduate qualifications with a master’s degree or PhD but my cognitive issues made such high level studies unrealistic.  

The first course I attempted was pitched at the academic standards of a typical fourteen year old. Despite its short-answer questions and low literacy requirements it took four times as long to complete as the recommended timescale for a healthy adult fitting part-time studies around full time employment. What others could do in an hour took me weeks to accomplish and if I studied for more than ten or fifteen minutes in a day, post-exertional malaise would render me too ill to study again for days after.

harnessThe best way to explain what it’s like to study with ME is the analogy of a resistance harness a professional athlete might use during training.  In order to build muscle and stamina a training partner uses their bodyweight to pull back on the handles and impede the runner’s progress. This forces the runner to expend far more effort for only a fraction of the output while less accomplished athletes running unencumbered might easily outrun them.

This doesn’t mean of course the harnessed athlete is incapable of crossing the finish line; it’s simply going to take them much longer to do so. Usain Bolt doesn’t cease to be a world class athlete the moment he’s strapped into a harness, but he will (temporarily at least) lose the ability to put his full potential into action. It may be far more exhausting and take longer to recover from but with patience and perseverance he is sure to cross the finish line in the end.  

The fact my IQ remains untouched means in theory I am still capable of the same mental feats that once came so easily but it takes far greater effort for a fraction of the productivity. The time-consuming nature of studying with cognitive dysfunction has forced me to go from being the student who went the extra mile to the student who cuts every possible corner and does the barest minimum to get the job done.  

Difficult as it’s been, a handful of certificates of increasing difficulty testify to the fact that I still have some academic potential, even if I struggle to put it into practice. Any amount of studying, however small, still beats twiddling my thumbs or watching Jeremy Kyle and perhaps some day that elusive Masters or PhD might prove to be possible after all. Watch this space.


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19 Responses to Intellect and M.E.

  1. Glued to this space!!! I tackle Sudoku’s for my brain. Before falling ill I ate them up and now find that I can do the first puzzle okay but my time lapses as I attempt no 2 and usually end up cheating – or as I say to hubby – getting help- on no 3 before calling it quits. I’ve also taken to reading the newspaper online everyday, even if I don’t remember what I’ve read! Doing this at least makes me feel somewhat informed, somewhat knowledgeable about the outside world. We are clever women, we will plough on and be better for it 🙂

    • I threw a sudoku across the room the other day when I realised I’d spent twenty minutes writing the numbers in all the wrong places. You clearly have patience with it than me! I frequently tell people I’ve read something interesting I intended to share with them but can’t actually remember what it was. So long as it was interesting at the time of reading I guess that’s the important thing.

      • Haha!! I often read a piece in the paper, and then turn around and tell someone about it… only problem is that my replay of the piece is entirely different to the piece written in the newspaper! We’ve got to laugh!

  2. Great post. Your intellect shines through your writing; my frustrations with chronic illness are far less poetic than yours. Hats off to you for being able to write so well given how much effort it must take to do so.

    • Thank you so much. Your writing is poetic enough for me to have learned from it. I’m sure others have too. One of the few advantages of having to spread tasks out is it forces me to think about what I’m writing for longer and hopefully makes for a more considered post.

  3. vjearle says:

    I just came back from an appointment with my therapist to find this post – exactly what we were talking about. I learned recently that the cognitive problems are a result of inflammation on the brain (for ME/CfS patients) and therefore, hindered not aided by exercising mental skills – rest is the best regime, as it is for the body. How does a formerly scholarly individual minimize mental activity? It sounds like this is as a great a challenge for you as it is for me.
    Thanks for sharing.
    p.s. My children gave me an adult colouring book for my birthday, and I have to admit it is quite calming.

    • Yes, I find I have to be totally rested to do any study and only do bite sized chunks as too much triggers far worse neurological symptoms than physical exertion. It took several years for me to be able to do any cognitive activity and I have to be very disciplined in knowing when to stop. As you say, it’s a great challenge at times when your brain always wants to busy but you have to switch it off.

  4. Jan Porter says:

    The few posts I’ve read since subscribing have been very informative. I now appreciate the cost involved for you. The people I’ve encountered with ME/CFS have all been of above-average intelligence, ambitious and intellectually curious. It begs the question of whether they are more prone to developing the condition. I recently encountered research by Jerome Kagan connecting introversion with higher levels of the stress hormone cortisol. Introverted individuals are generally more reflective than extroverts. Do more introverts develop ME/CFS than extroverts? I’ll try to parse out some of my energy to chase that thought down in the future. Thanks for spending some of yours to share your experience.

    • You raise some interesting questions. The high achiever debate is one I’m well aware of but had never considered the introvert/extrovert question before. I too would be interested too know if there’s a connection. Thanks for commenting.

      • tipsforme says:

        I think I’m right in remembering cortisol is usually lower for us so this doesn’t quite fit. An effect I definitely have is difficulty remembering where I’ve read stuff! If I *can* read I think I usually comprehend it well at the time. My working memory is technically in the average range (7 +/-2 items) and from being a psych student I know it wasn’t great before I got ill. There was a marked difference in my experience of learning though. It always came pretty easy before, then I felt like I went into exams not knowing anything. One of the ME researchers (can’t remember name…) said something about about causing damage when we concentrate too long on one task if there’s brain blood flow issues because there’s less blood going to other brain regions (similar to dangers of exercise I think). Maybe this is related to the perceived over achievers thing?

  5. Brain fog is the worst. It’s great that you’re managing some study! It’s a relief to hear that IQ isn’t affected. I know it’s silly, but I keep worrying that even if I get better the cognitive symptoms will be permanent.

    I had a longer reply about my experiences (I developed cfs with one subject remaining in my postgraduate degree and was determined to complete it), and then realised that I really didn’t want to revisit it in detail. I completed the degree. We’ll leave it at that.

  6. Claire says:

    You’ve described it really well – it goes way beyond mental fatigue and into brain damage territory.

  7. This is such a good post and totally resonates with me. As my health has improved my physical fatigue has lessened some what but my cognitive fatigue is still bad and is so frustrating so I totally relate to what you’re saying. It’s interesting what you say about ME patients being able to access long held knowledge, obtained pre illness, verses new info. I see that in myself. At times it’s been so bad I’ve worried about be early onset dementia! I’m relieved to know you’ve seen no change in IQ, I’ve never had mine tested so that’s reassuring.

  8. Pat Poole says:

    I had my adrenals tested using the 24 hour saliva test and found that my cortisol levels were nearly zero, therefore in the exhaustion stage of adrenal fatigue. I began a course of adrenal support tabs and while there has been no improvement in any other aspect of ME, the cognitive disability that we often refer to as brain fog which hinders so much mental activity has almost completely disappeared. The other side of the coin is now that I get so much more easily bored when resting as my mind is clearer.

  9. StephanieS says:

    You’ve described this so well. Thank you.

  10. tipsforme says:

    You may be interested in these cognitive function tests. I think the digit span (working memory) and feature match (concentration) are most relevant for us. If you practice them you may find you improve

  11. Miss P says:

    I find it really frustrating. Sometimes I really want to do something mentally – I have the time, I have the drive but.. no.. brain is stick in first gear..

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