How can we move forward on understanding OI (needing to lie flat) in PwME?

Sasha

Sasha

Senior Member (Voting Rights)
On the ongoing thread about a factsheet for healthcare practitioners, we touched on how difficult it is to know what to say about what those practioners should do when faced with a PwME who needs to lie down a lot. As I said on that thread:

Sasha said:
Much as I wouldn't want a health practioner anywhere near me advising me on how much or when to lie flat, from a position of their own total ignorance and mad prejudices about ME/CFS, I'd really welcome a good discussion on the forum about it.
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Research on OI in ME/CFS doesn't seem that great, and it's hard to know what to think about how a PwME should balance their need to lie flat to relieve their symptoms, and the fact that lying flat might be expected to make OI worse.

Is this the equivalent of PwME needing to rest, regardless of the deconditioning that that will cause? Or is it a different biological scenario?

How do we move forward on our understanding on this, and how do we find out what our best strategy is as people with ME/CFS who have OI?
 
There was one comment in the thread that mentioned reversing the framing, and I think it's the better approach.

I don't ever "feel a need" to lie down. At some point I just can't continue standing up. Also I don't function well standing up. In the last 2 years it has improved a bit, I used to absolutely need to at least be sitting down simply to be able to process even a simple conversation. Not because I needed to sit, but because I couldn't do the thing while standing up.

It just flips the script about where the action is, which is not the lying down part, it's the no longer being able to continue being upright. Like having to drop weights in a weight-lifting session when you get past the point where it's just no longer possible to keep pushing.
 
I also reach a point where I can no longer push but I have wondered whether it's possible to train your way at least partly out of it by pushing repeatedly or whether that will always make things worse. I had a very long-lasting relapse after I was in a situation where I had no choice but to remain upright well beyond my capacity and pushed myself way over my limit, so I think it very possible that pushing can be disastrous (noting, as @Jonathan Edwards always says, that one thing following another doesn't always show causation).

Prof. Julia Newton did a trial in 2009 of 'tilt training' in Fukuda (PEM not required) Pw'CFS' but I can't access the full paper and now I'm tired and off to bed! I hope someone will have delivered some wisdom when I wake up tomorrow.
 
I absolutely have to have my feet up in pixie position all the time. I'm also unable to sustain sitting upright and end up reclined most of the day. But I figured that is better than me lying totally flat in bed all day long so I'm doing as much as I can. I do have spells of simply "having to be flat" in bed, often during pem. I also follow my body when it tells me and I do so far stop having to gradually and recondition if that is what it is. Sometimes it's only for an hour sometimes it's most of the day. But I try to up upright for a spell at least every day.
 
I have never associated my strong need to lie flat with OI. I have never needed to because of any sensations of dizziness, lightheadedness, feeling faint or blurred vision. My sensation is that I feel so depleted I simply must lie flat to get away from it.
 
oldtimer said:
I have never associated my strong need to lie flat with OI. I have never needed to because of any sensations of dizziness, lightheadedness, feeling faint or blurred vision. My sensation is that I feel so depleted I simply must lie flat to get away from it.
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I don't get dizzy, lightheaded or faint either but there comes a point when I absolutely have to lie down. OI simply means that you can't tolerate an upright posture normally.
 
Thanks. I should have looked up the definition of orthostatic! Now I can add another symptom to my list.

Actually, I have found the lengthy discussions here about it so confusing and convoluted I gave up trying to make sense of it.

(I don't believe this is the right forum for me, with no knowledge of even basic chemistry and no energy to learn it, but there's nowhere else I can find that avoids constant BS. Any suggestions would be gratefully received.)
 
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Based on my experience.

Lying flat all the time is harmful.

Being exposed to PEM or excessive orthostatic stress is also harmful, but healthcare providers don't take these into account or believe they are trivial problems that will go away with habituation.

Continued sitting or lying down, with rarely any interruption is especially harmful. Getting up regularly and walking a bit is enough to mitigate a lot of the negative effects of lying flat and being inactive.

Since the discourse by healthcare providers excludes PEM and OI or misinterprets them, and the general expectation and personal desire is to push and be active, the patients tend to emphasise rest and lying down to balance things. This is then misinterpreted again by healthcare providers who, due to ignoring PEM and OI, think patients are taking some extreme position. In reality, patients are, generally, trying to find a balance and need encouragement to pace.

So what I think works, at least for some patients, is to alternate between activity or standing and lying (or sitting), with the duration and intensity chosen based on how well it is tolerated. A little bit of activity or time upright is a healthy stimulus promoting adaptation, but too much will have the opposite effect and cause crashes. It's about finding the right balance, and two challenges are to accurately estimate what type and amount of activity is tolerated, due to the negative effects being delayed and accumulating over several days, and the psychological aspect of wanting to live, be active, do interesting things and having to hold back to avoid crashes.
 
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