Saturday, 9 January 2016

When "auto-pilot" fails!

Today I saw a paper on "Reduced gait automaticity" and this idea rang very true to my own illness experience. 

The paper used female subjects, diagnosed with CFS (CDC criteria), and compared them with healthy controls (1).  In a nutshell the subjects were asked to walk and then perform various additional tasks.
Unsurprisingly the patient group were less able to cope with the multi-tasking angle of the tests, and were more likely to stop walking when asked to do an additional task (eg adding two numbers).

Obviously these patients were not in the severe category, but perhaps something like this could be adapted as a marker for assessing patient well-being?

Recently I have been monitoring myself, by recording heart rates, daily steps and so on - all with the idea of searching for that illusive "something" that would give me a measure of how I'm doing on a particular day.

In my experience the time I'm most likely to harm my health by doing too much, is when I am "dangerously okay" - ie when I think I am doing better than I really am.

Yet, despite all my number-watching, one of my best markers for gauging how I'm doing in any one moment, is how I cope with a certain step on the way to the bathroom at home!

The single step down is followed immediately by a 90' turn. I know when I am struggling, because on those days, I can't do this turn in one fluid movement. I need to concentrate first on the step, then on my balance when I land, then on the turn, and then on starting to move again.

There are some days when I feel reasonably well and think I'm "okay", but then I am surprised when this step & corner requires more care than I was expecting. It's a subjective measure of course (and I've been known to berate myself for being clumsy when it happens), but having read the paper linked above, I now think perhaps there is something really useful in this.

Would there be a way to use a co-ordination / multi-tasking test to assess current ability?  

I think ME patients all recognise there are times we simply can't multi-task.  This happens with many activities - walking obviously, but also eating, writing, talking or what ever. Each task can often demand much more attention than a healthy person would normally give to such a basic activity.

It is as if these activities, previously accomplished on auto-pilot, suddenly demand more of our conscious attention, and so sap our ability to do more than that single action.  And the effect becomes noticeably worse after any type of exertion.

We can be quick to blame ourselves for our clumsy, brain-fogged, un-coordinated abilities and grumble about having poor multi-tasking skills, but maybe we should be watching for these times and using them to judge when we are getting "dangerously okay" and in need of some extra rest?

I have used the word "clunky" to describe my reduced co-ordination at these times, because it is as if all my conscious body controls are under-performing.  Yet that "clunky" feel is also a big warning sign, even if I am feeling otherwise okay.

Sadly, the most severe ME patients will experience these  problems almost constantly. For people with severe ME, it seems that all their energy is directed towards life processes with little to nothing left over for extra.

Yet the rest of us, who still have some flexibility with our activities, should seriously listen to the warning signs our bodies are giving us, and recognise when we should NOT push on regardless.

Unfortunately the bio-psycho-social school for ME suggests that these warnings can be ignored - they suggest these signs are a result of de-conditioning, and that we will improve if we exercise more. They also imply that we are over exaggerating the importance of our symptoms.  I disagree on both accounts.

Studies like the one linked above, many not tell ME patients anything they didn't already know, but they do serve a purpose.  They demonstrate that our bodies are not performing adequately, and it is my hope that studies like these may lead to improved ways of objectively measuring the effects of ME.  Such measures could also potentially lead to scientists developing ways to safely measure treatment responses.

Another study I saw, that seemed to offer a potential way of measuring our functioning, was an eye test (2).  This study showed that we were less able to track moving objects accurately than healthy controls.

I wonder are there computer tests that could measure our co-ordination and multi-tasking abilities?  Would such tests be useful to patients and / or scientists measuring ME function?  Would we need a specialised test for this? Interesting to think about.

Until then......

Our biology gives us warning signs. I think we should pay attention to them.

Edit: Some how I missed part of the discussion in the paper that includes the following paragraph:
"Current rehabilitation guidelines for patients with CFS prescribe graded exercise therapy (GET) and cognitive behavioral therapy. If the present findings are confirmed by others and if future work shows that the observed reduced gait automaticity in patients with CFS is of clinical importance, adding gait automaticity training to current rehabilitation programs for CFS seems warranted"
 I am not sure that the work done in this paper suggests that patients need more rehabilitation! I would prefer they suggested that more research was required to find out why we have such problems at all.....

Another after-thought:
The blog Infinite Daze has also written on this gait automaticity paper.  Worth a read: Infinite Daze: Gait and CFS/ME - includes details of a simple test involving clicking a pen whilst answering questions.

1. Journal of Rehabilitation Research & Development (JRRD)
Volume 52 Number 7, 2015    Pages 805 — 814
Reduced gait automaticity in female patients with chronic fatigue syndrome: Case-control study
Jan b Eyskens, MSc PT, DO, Pr Ph;1* Jo Nijs, PhD;2 Kristien Wouters;3–4 Greta Moorkens, MD, PhD1,4

2. Graefes Arch Clin Exp Ophthalmol. 2013
Dec;251(12):2769-76. doi: 10.1007/s00417-013-2431-3. Epub 2013 Aug 6.
Characterising eye movement dysfunction in myalgic encephalomyelitis/chronic fatigue syndrome.
Badham SP1, Hutchinson CV.

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  1. Listening to own body seems best choice as psycho babble crowd walk away when it goes pear shaped. Using mio fuse for heart rate monitoring following advice from a previous blog thanks for all your efforts.

    1. Glad my experiences are helpful for you. Hopefully 2016 will be the year for a biomedical break-through in understanding the physiology of why we can't function normally. :)

  2. I disregard researchers who are obviously biased and who refuse to open their minds enough to even consider that perhaps patients with me/cfs do actually need rest.

    As for a way to determine where you are on the safety scale, perhaps you could come up with a mental challenge. If you want something which can be measured and checked by a computer, possibly the challenge can be repeating a phrase word for word and writing it correctly. Or some other cognitive functions such as listing words, performing a math equation, putting words in order alphabetically, or something similar which requires a certain level of concentrational clarity.

    I can typically tell when my resources are weakened when I recognize any of the following signs: I feel dizzy. I start to mess up my normal day-to-day activities and do what I refer to as my "fuzzy pickle exercises". I notice that I'm mixing up simple responses, like slurred words or the wrong thing in the wrong place. Like putting the milk in the cabinet and the cereal box in the fridge. Or walking into a room and forgetting why I walked into the room for - which happens all the time, but when it happens repeatedly during the same time frame.

    Good luck!

    1. LOVE the phrase "fuzzy pickle exercises", I think we all have some little things that become indicators to us. :)

  3. Thanks! Does anyone have a simple answer to give medical professionals regarding this?

    I was answering a nurse's pre-procedure questions the other day; she asked, "Why do you have trouble walking?" I couldn't really answer her.

    My husband chimed in and said, "She has spine problems." (I do have lots of spine problems.)

    But the reason I have trouble walking is if I've walked any distance, my legs and feet feel as though they don't know what they're doing anymore and I begin to stumble. Same thing with my arms after exertion; I begin to fumble and it becomes difficult to even get a dish from the dishwasher into the cupboard.

    I'd love to have a short, concise answer to give which explains my lack of strength and coordination after exertion, or on "bad" days.

    Hoping you all have many happy moments today.

    Thanks for the good info. you share, Sally!