What does deconditioning look like? Posted on August 15, 2024

[southwestforests]

Hey Y'all; This may be of interest.
And of course that it brings in NASA appeals to me.

Deconditioning has long been one of the most popular theories in explaining the illness myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). An excessive amount of bed rest was thought to cause a self-perpetuating cycling of fatigue, pain, and other disabling symptoms. This blog post examines what deconditioning looks like and how it differs from ME/CFS.

https://mecfsskeptic.com/what-does-deconditioning-look-like/

Sample of its content,

Cognitive difficulties are sometimes mentioned in bed rest studies but rarely so. Reviews concluded that “cognitive functioning does not appear to be adversely affected by long-duration head-down bed rest” and that “any cognitive effects of bed rest thus remain to be established.”

Common ME/CFS symptoms such as post-exertional malaise, widespread pain, and light and noise sensitivity are not mentioned in bed rest studies at all. This is curious because researchers have repeatedly claimed that deconditioning can account for these symptoms. The patient manual for exercise therapy used in the PACE trial, for example, stated that “prolonged rest results in a change in the way the brain perceives external sensations, like noise and light, with consequent sensitivity. This may result in visual problems and sensitivity to noise.” An editorial on the role of physical inactivity in ME/CFS claimed that deconditioning caused “not only fatigue, exercise avoidance, and intolerance, but also sensitivity to noise, reduced visual acuity, orthostatic intolerance, and heat and cold intolerance, amongst others.”

There seems to be little to no evidence for such statements even though they have been repeated multiple times. We have tried to track their references and sources but were unable to find bed rest or other studies that demonstrate that these symptoms result from deconditioning.

Oh, with that PACE trial being mentioned up there, I suggest reading these,

Editorial: On PACE
by sasusa | Mar 21, 2016 | Study design | 39 comments

https://senseaboutscienceusa.org/editorial-on-pace/

and,

PACE: The research that sparked a patient rebellion and challenged medicine
by sasusa | Mar 21, 2016 | Study design | 44 comments

https://senseaboutscienceusa.org/pace-research-sparked-patient-rebellion-challenged-medicine/

 

[belize44]

My leg muscles resemble those of a wheelchair bound person; they have definitely shrunk.

 

[Rufous McKinney]

I was thinking about how long ago it was (maybe 15 years) that I made an online shopping error and ended up with a pair of Smart wool compression socks.

I am unable to ever wear a normal pair of socks again. It feels like I am walking on knots, it's painful and irritating. Normal socks.

I realized, this is evidence of the "subcutaneous fat loss" on the bottom of my feet. Even tho I was still doing things like going out working all day, even some hiking around, I can't hike wearing these awful socks. I had not gotten worse ME, quite yet when that happened. But this loss of muscle and collagen has been going on for a long time.

My theory from observing this is its not fat loss, its loss of the collagen which holds the fat together into bundles. Its all broken down.

So now I have no fingerprints, my muscles are extremely weak and hardly exist, plus I look awful.

 

[belize44]

I have that same issue with no fingerprints.

 

[Rufous McKinney]

I have that same issue with no fingerprints.

well, my drivers license finally lapsed and no way am I going back to the DMV.

where I could not trigger the thumb print machine, which also exists in Customs. But what would happen, if I"m ever again in customs? I'm avoiding that, too.

 

[southwestforests]

I realized, this is evidence of the "subcutaneous fat loss" on the bottom of my feet. Even tho I was still doing things like going out working all day, even some hiking around, I can't hike wearing these awful socks. I had not gotten worse ME, quite yet when that happened. But this loss of muscle and collagen has been going on for a long time.

Hmm, that or something causing essentially the same effect has been going on in my feet for at least, what, a decade.
The podiatrist did not mention any connection to already established diagnoses of ME/CFS, or fibromyalgia, or neuropathy, and I myself did not draw a connection.
Have to wonder now if there is some connection.

Ouch! That feeling like knots under the feet thing sounds serious, sorry that has to exist for ya.

 

[Rufous McKinney]

I myself did not draw a connection

I don't have fingerprints any longer, my thumb will not trigger the thumb print machines and my fingertips are collapsed. Like if I type, they become flat and it takes a long time to return to normal.

the padding on the hand by one's thumb? flat, I cannot open cans with my Swiss army knife any longer, I have to use some padding otherwise it HURTS. so thats is more "padding, missing".

Maybe some of the muscle loss we experience is also involved.

 

[southwestforests]

Maybe some of the muscle loss we experience is also involved.

Good point there.

Wish I had something to offer in the way of relieving those padding losses.

Is a different thing, but involves opening stuff in the kitchen, any more the old yet still nice channel lock pliers from the 1980s have now become a kitchen appliance and are kept in plain sight on the kitchen counter for their frequently needed long handle leverage in opening water bottles, juice bottles, salad dressing bottles, and such.

They have several more size selection options than the newer ones bought to take their place in the toolbox.

 

[Rufous McKinney]

the old yet still nice channel lock pliers

Yes, that sounds helpful.

What I have also found recently, is all these new modern "handy tools" that they invent (and people give them to us, as if they would be "handy")....well I can't even get the screw driver to deploy. These Twelve In One Tools, that type of thing, I can't hardly work those.

Getting the lid off of anything. Opening a box. I have the hardest time opening stuff. Untying knots. I can spend ten minutes trying to untie a knot in a plastic bag.