Rest: how does it help PWME biologically? What sort of rest?

[Sasha]

About 20 years ago, I read about in one of the UK ME charities' magazines about ART - "Aggressive Rest Therapy". I think it was maybe written by a patient trying to remind him/herself that resting wasn't just what you did when you were forced by your fatigue to do it, but actually so useful biologically that it's a treatment. Nancy Klimas (I think) has said that no pill or potion is as effective for PWME as pacing, which of course incorporates rest. Sarah Myhill has said that resting, involving proper head-flat, no TV lying down, is important.

Like many of us, I spend at least four hours a day lying down, but I'm not always completely resting. I'm often reading, listening to the radio, or, with my head slightly elevated, watching TV. I spend about half an hour of my lying down time meditating; only then am I probably completely resting.

My question: biologically, immunologically, physiologically, what does rest do in PWME? Do our brains really need rest (no TV while lying down) or just our bodies? Why? Are they running out of fuel or something? If rest was a drug, what effects on the body would be reported in a clinical trial? E.g. on mitochondria, cytokines, whatever? Why is rest good, and what sort of rest?

With an understanding of what rest does, I'd feel more motivated to rest properly, and I expect I'm not the only one. Looking forward to hearing from the biologists out there!

 

[ukxmrv]

I was told to sit with my legs up to help the blood flow get around my body. It may be only a small part of the puzzle but it's a start. I find ART very helpful. If I can't lie flat and need to do things then at least sitting on the sofa with my legs up is muich better than sitting in a chair or at a table.

 

[Valentijn]

I think rest can help our bodies build up glutathione stores somewhat, since stressors drawing on glutathione are reduced when we're inactive. Getting those stores built up enough might help other treatments to kick start things into working properly again.

 

[justy]

Hi Sasha, i dont have the links for you they are easy to find and i am quite ill at the moment -but i think Dr MYhills Mito theories and work fit this exactly. anyhting of hers is useful. she advocates ART until one feels well at rest then and only then gradually do a bit more until you can tolerte it -if you feel worse after upping activity pull back again. Mnay people have found thids very helpfull and i have spoken to some who say it is part way curative. i am bad and dont practise it -hard with a family. the idea is that not resting and having symptoms is a signal to your body that you have run out of energy and you are now causing active damage (cell free dna levels show this, mine where high) restin allows the body to reach a healing and repair state whic can never happne if you have mito dysfunction and dont rest. of course more is needed not just rest, but supplements or drugs to heal the mitochondria and underlying pathologies.
Got to stop now, hope this make sense -Justy x

 

[Sparrow]

I agree with what's been said. As I understand it, our bodies truly just don't have enough resources to go around. And active thinking (responding to the stimulation of TV, processing visual information, etc.) takes resources. So if we use them for that, something else has to go without. Maybe that means some organ in our bodies is under extra strain. Maybe it means our basic functioning needs are barely met, but there isn't anything left over for healing. I've heard that connection between cell-free DNA and activity that Justy mentioned. The more we do, the more of our body's cells die (ones that shouldn't be). So we can literally kill ourselves off a bit at a time by trying to do too much.

There's also that whole Cheney thought about our brains being on the verge of seizure all the time. ...So if we try to push through that mental haze too much, we're killing off brain cells and causing damage.

Not that either of those is enough to get me to just lie there most of the time. Human nature, I guess.

 

[Sasha]

I was told to sit with my legs up to help the blood flow get around my body. It may be only a small part of the puzzle but it's a start. I find ART very helpful. If I can't lie flat and need to do things then at least sitting on the sofa with my legs up is muich better than sitting in a chair or at a table.

I'm the same - I think this might be an orthostatic intolerance issue. I have less than an hour a day with my feet on the floor!

 

[Sasha]

I think rest can help our bodies build up glutathione stores somewhat, since stressors drawing on glutathione are reduced when we're inactive. Getting those stores built up enough might help other treatments to kick start things into working properly again.

That's interesting - I'm trying Rich/Fred's b12 protcols which are all about trying to get glutathione up by supplementing with things further up (down?) the methylation pathway. Presumably if stores are less depleted, that cycle has less work to do.

 

[Sasha]

Hi Sasha, i dont have the links for you they are easy to find and i am quite ill at the moment -but i think Dr MYhills Mito theories and work fit this exactly. anyhting of hers is useful. she advocates ART until one feels well at rest then and only then gradually do a bit more until you can tolerte it -if you feel worse after upping activity pull back again.

Thanks, justy - does she mean in a particular session rest until you don't feel tired any more and then get up or schedule so much rest in a day that after a few days you feel well while you're just sitting about doing nothing?

I remember trying the former some years ago and actually doing very well on it, but it involved resting for hours at a time and I find it difficult now to force myself to do it, partly because I'm worried about making my OI worse (prolonged bedrest can provoke OI even in the fit).

 

[Sasha]

As I understand it, our bodies truly just don't have enough resources to go around. And active thinking (responding to the stimulation of TV, processing visual information, etc.) takes resources. So if we use them for that, something else has to go without.

Thanks, Sparrow - I think you're right. I watched an online video of Rich van K's presentation in Sweden yesterday and his account of what he thinks is wrong with our biochemistry really gives the impression we don't have enough stuff!