Three months of bed rest induce a residual transcriptomic signature resilient to resistance exercise countermeasures, 2020, Fernandez-Gonzalo et al

Open access, https://faseb.onlinelibrary.wiley.com/doi/full/10.1096/fj.201902976R

From what I've scanned I thought this study was pretty interesting, especially this part.

Which to my mind provides circumstantial support to the idea that disrupted sleep patterns in PwME could be as a result of understandable adjustment to the effects of ME, not that disrupted sleep patterns drive ME.

@PhysiosforME , this might be of interest?

 

I think propensity to have PEM and sleep disruption developed together in a prodromal phase in my case, with no relationship to excessive bed rest. Only after the illness onset did I have to begin reducing my activity levels.

 

Yes, it is a pretty interesting study, but the result in itself is also not a surprise.

In terms of ME I am not sure that this is of any major importance, it could potentially be one predisposition. And I guess, a rather unimportant one. I don´t think that any muscle problem is core, and many parts of the body could do influences, having altered their gene expression.

 

Most ME patients' activity patterns don't resemble bed-rest. For the many who are bed-bound I guess it's just more shit on the pile, if these results mean anything.

Personally, I started to experience sleep disturbances and all sorts of odd things while I was still weightlifting and sprinting intensely. The whole bps deconditioning story has never held any water since few patients go from functioning to totally bed-bound instantly. Some people get KO'd off the bat but it seems like most people are able to struggle on over some period of months-years before capitulating to the degree needed.

 

My sleep disturbances started on the day I came down with EBV. I certainly wasn't deconditioned or excessively resting at that point.

 

I slept like a baby for the first 11 years of ME. It was when I started improving and exercising that I went into complete insomnia phase for almost 2 years. I also started experiencing terrible sleep disturbances/wired/tired when I returned to work for a short duration after a 'recovery phase'.

So for me, too much activity induces insomnia and sleep disturbances.

 

Unrefreshing sleep was one of my first symptoms, about 9 months before I discovered pacing and started to cut down my physical activity. My sleep is much improved since reducing my physical activity, as are all my symptoms. I'm nowhere near "deconditioned" anyway, whatever that word is supposed to mean. Never have been. A little out of shape perhaps, but no more than the very many inactive people with a sedentary lifestyle who don't have M.E.

 

Absolutely.
If I have a “late” night, I.e. to bed after 10pm
have driven any time after 7pm (that doesn’t happen often!)
dare to read beyond 9.30pm
watch tv beyond 9pm

In other words, my brain has been ‘active’ - well, I can guarantee that I will be unlikely to be able to sleep before 11.30pm and probably have some wakefulness for an hour or so in the night too.

 

Difficulty with sleep, or waking feeling worse than I did when I went to bed was part of the initial noticeable symptoms for me.

I was still active and exercising.

I did become bedbound but it was a long slide with me fighting it every inch of the way - if I knew then what I know now.

Yeah, that's how I would see it.

I live in hope that the more knowledge we have about sleep, the less they'll shove hopelessly simplistic sleep hygiene routines that aren't always appropriate at patients and then shrugging & patient blaming when they don't work. This study might be a step forward on that path.