How I felt after 70 days of lying in bed for science (2015)

I recently re-read this piece and thought it was worth sharing based on the person’s experience of the effects of bed rest.

The key line, for me:

I suppose GET should be a miracle cure for those of us in bed rest then? Oh, wait.

https://www.vice.com/en_uk/article/jma83d/nasa-patient-8179-200

 

My experience was more like “after four months of no longer being completely bedbound my OI got a tiny bit better”, haha.

Overall, he paints a fairly accurate picture of the isolation and even all the things that can be missing in a relationship that is so close but just not possible, even if his perspective is that of an otherwise completely healthy person who did this of his own choice. And he doesn’t claim to have a perspective on being ill because of it, which I’m sure could be tempting to do.

 

Well, if the person in this study could effectively recover from severe, enforced deconditioning in just a couple of weeks, I'd say the six month long PACE trial results pretty much prove that deconditioning is not the proximate cause of ME.

 

Except that maybe all it shows is that deconditioning is not the proximate cause of inactivity in people who think they have ME but don't actually have it because all the people with real ME would not have volunteered to take part, having a false belief that they could not cope with GET. The only problem is that the theory was that people who only think they have ME are the ones who actually have ME (or CFS, this is a bit blurred). Now if even the people who just think they think they have ME but don't actually have a false belief they have ME don't get better ... (?) ... what hope is there for people who think they have ME and therefore do have ME? Or something like that. Whichever way up you turn it, the treatment doesn't work.

 

My mind just imploded...

 

Ditto

 

In contrast, I was forced to undergo graded exercise for over 6 years by my employer's medical assessors (I was in the 'mild' category at the time) and all it did was make me worse.

White et al would probably say that I "did it wrong".

 

The bed rest studies of the US and Chinese space programs more or less agree - healthy people recondition relatively quickly after prolonged bedrest...

 

Not to mention the fact that many of us didn't know we had ME, didn't even know it existed, and still got sicker and sicker while trying to continue working out and staying active. I believed I wasn't being healthy enough for 8 years before I got so ill I was diagnosed. Which actually WAS a false illness belief, I believed I wasn't ill when I was. If I had believed I was ill at the time I probably never would have become severe or even moderate.

 

That’s a good point to make when one of them throws that line at us, especially in the beginning.

They are often right that we do have false illness belief just the opposite version of the one they’re peddling.