Exoskeletons, Pacing and PEM

Jenny TipsforME

Jenny TipsforME

Senior Member (Voting Rights)
A friend of mine who has MS recently posted a video of her walking well with an exoskeleton. This seems to be something some people with MS and Parkinson’s are exploring, but I’m not seeing ME chatter about it.1760001296050.png
Pic from website

This is the main one I’ve seen and the one she has https://uk.hypershell.tech/pages/hypershell-x-exoskeleton . I looked a few years ago at exoskeletons but they were bulky and very expensive, the price and weight seems to be going in the right direction.

It reduces the muscle effort required for walking. This seems like it could be a significant boost for mild folk, for me personally I think I might already be too severe and complex. For example, it might be more awkward than helpful in a POTS faint and you have to be able to initiate starting to walk.

It’s an interesting one to do with Pacing. Has anyone had experience navigating this? In theory it would be possible to increase activity without using more ATP but I don’t know how you’d measure staying within limits, you wouldn’t want to risk trial and error with ME. Perhaps heart rate is a good indication or time upright?

There’s a facebook group if you want to ask people who’ve actually used one: https://m.facebook.com/groups/1518640288838184/?ref=share

( this thread discusses a relevant paper to do with fatiguability and exoskeletons but that’s a passive exoskeleton, this one contains a battery and motor to actively assist moving your legs).
https://m.facebook.com/groups/
 
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The fb group has some members w ME. I think the main issue is they weigh a bit much, and require some effort getting in and out of and setting up. But if you can manage that, some people find them good but the risk is you over do it and go into PEM. I didn’t buy one bc I felt I would almost certainly overdo it. Plus you cannot buy them and return if they don’t suit for you, only if they’re faulty. They’re expensive to not be able to try out first.
 
Braganca said:
Plus you cannot buy them and return if they don’t suit for you, only if they’re faulty. They’re expensive to not be able to try out first.
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I did ask them about this and took a screenshot of them saying to me “To clarify, you are welcome to use the product to try it out, but when returning it, the product should not be damaged, show signs of use, or appear worn.” I definitely wouldn’t buy if this wasn’t the case, and suggest if anyone is going to buy they get some evidence like this, as it’s not the same as the website implies.

PEM is the thing… If I was mild level with a bit of cash available I would definitely try this but take careful ‘before’ measurements and aim to maintain upright time and normal heart rate, rather than increase (which should mean more is done on same energy). At moderate level it would be most tempting but dicey. At severe level it probably doesn’t do enough to be worth the money?
 
Ohh really? This is interesting.. I am severe but physical exertion on the moderate end of severe.. I feel like it would get me from my current safety level of 6 mins walking to maybe 12 or 15..? I have walked up to 11 mins before but it became quite uncomfortably difficult after about 6 mins and did lead to PEM.

But maybe with orthostatic intolerance and general overstimulation, will still be a bad idea.. I could totally see myself being unable to stop walking out of excitement and overdoing it..
 
Ryan31337 said:
I'd wonder if this could actually exacerbate OI in some cases, where engagement of muscle when upright is seemingly important to combat blood pooling.
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You do have to be able to engage your muscle, which is why it’s of limited use as you get severe, but possibly ok for what you’re describing. I have daily episodes of not being able to get up, or getting frozen on the spot. It wouldn’t do anything in these circumstances because it increases the power of your muscle movements but doesn’t mechanically move your legs without them already moving.
 
I was thinking more along the lines of the apparatus effectively holding the person up when stationary. Obviously wouldn't be as significant as being strapped to a tilt table, but perhaps a closer analogy would be perching with legs dangling over a bar stool. Both can be absolute killers for some people with OI.
 
At top end of severe and housebound.

Capacity and capability wise this wouldn't remotely work for me even before pem considerations.

I simply can't exert myself when upright other than a brief few steps between rooms, just effort to putting it on would exhaust me.

On the infrequent occasions I do leave for important health consults I need a wheelchair as my OI/POTS/dysautonomia is too bad as well as stamina too poor to manage on foot.

I don't see how this would be a viable alternative unfortunately.
 
My guess is that some PWME would be able to do a bit more activity without suffering PEM, others would trigger PEM from the extra cognitive/emotional factors resulting from walking further (seeing new things, interacting with people), others might trigger PEM from the extra cognitive effort of working with the devices (I'm sure it's more effort than walking without them). The question is what percentage of PWME would get significant benefit from it? If it's expensive and inconvenient to try an exoskeleton, it might not be worth it if your chances are 2/100, but worth it if 73/100 people report it made a huge improvement in their quality of life.

I expect there would be definite subgroups for whom an exoskeleton is worthwhile and those for whom it's not worthwhile.
 
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