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

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:

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.

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.
 
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.
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.)
 
Last edited:
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.
 
Last edited:
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.)
I have barely any functioning knowledge of chemistry or biology so I mostly skim or ignore those aspects of the forum - I find lots of other stuff here useful and engaging, though, and it's good to get a general sense of where we are with the science. And as you say, constant BS is avoided!

And now you've learned the name of another of your symptoms :( which might be helpful :).
 
Based on my experience.

Lying flat all the time is harmful.

[...]

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.
[...]
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.
I think this is what we need to know - does our experience reflect what works best or are there better options? How do we move forward in answering the question?

Is there even some very, very careful 'citizen science' or a home-based preliminary trial with wearables that S4ME members could do? Those who know themselves to be robust enough to deal with mild/short-lived/spaced-out orthostatic challenge?
 
My experience:

I don’t know how long OI has been a significant contributory factor in my ME. From the start I have needed to lie down completely flat, for example when I was still working full time, I found if I was able to lie on the office floor in the middle of the day (not always an option) for ten or twenty minutes my day would be less exhausting. I found I was able over time to get more brazen about, though other people get worried about it, if I needed to lie on the floor in ‘public’. When a relapse forced me to give up work, I was aware that lying totally flat on my back on a firm surface was physically the most restful position, even if not always the most comfortable option.

It was only about ten years into my ME I consciously noticed a hierarchy with leaning less tiring than standing unsupported, but that sitting was better, further sitting with my head supported was even better, lying with head raised better still, but that lying totally flat provided the most rest. However I assumed this related somehow to physical effort.

Further over time trying to do anything bending forward became noticeably more tiring, though I had no explanation for that, other than some half backed idea that being overweight there was some how physical pressure on my heart or restriction placed on my lungs. (Added - I have not discussed orthostatic issues with a doctor though I did have my heart checked when my ‘chostochondritis’ was very marked, with the chest pain being very severe. I do now have high blood pressure, but I am nearly seventy, unfit and overweight.)

Initially in the course of my ME I spent time researching the condition, but after a number of years going through the trying everything and anything to mitigate the condition, I recognised that there was nothing I could do and just dropped out of any groups or following ME news and just got on with doing whatever the current course of my ME allowed. About fifteen years into my ME I got more involved in online groups and forums and became aware of the concept of orthostatic intolerance, which was a better explanation of my experience than just being upright requiring more physical effort.

It was only with the most recent and most disabling relapse, some twenty years into my ME and some ten years ago, that I was only able to stand for five to ten minutes without getting dizzy and breathless and at risk of fainting if I tried to push it. It was then more obvious that being upright placed a greater restriction on what I could do than the actual physical exertion involved. Then I was very consciously aware of being upright as something I needed to minimise in contrast to the previous idea that being totally flat was most restful position.

Being pretty much bedbound, I then had a high backed chair by the window so I could watch the birds on the garden feeders sitting with my head supported in short bursts, also I would try standing looking out of the window. However, though I could very slowly do both for longer over a number of years, I can not say if this was an incremental reconditioning or a reflection of a very gradual spontaneous improvement in my underlying ME.

Now, though I still can’t do anything requiring bending forward such as weeding, which within one or two minutes results in dizziness and breathless and risk of fainting, I can be upright for several hours at a time. I have more or less returned to being flat as good for resting rather than actively avoiding being upright, though still needing to average being horizontal for between sixteen or eighteen hours a day to avoid PEM. However when in PEM being upright again become more obviously difficult, something to avoid.

Speculation:

I suspect that, perhaps every one with ME/CFS has some degree of orthostatic intolerance that contributes towards the exertion required in doing anything upright, such that being horizontal is the most restful position for us, however that this does not necessarily involve any obvious adverse effects being obvious whilst standing. The possibility of reduced cerebral blood flow does not seem an unreasonable explanatory option.

However there is a second stage where being upright produces much more obvious adverse effects, possibly including POTS, making standing something we actively need to avoid. I don’t know if this relates to reduced cerebral profusion or if a second mechanism would need to be invoked.

[edited to correct some typos]
 
Last edited:
I think this is what we need to know - does our experience reflect what works best or are there better options? How do we move forward in answering the question?

Is there even some very, very careful 'citizen science' or a home-based preliminary trial with wearables that S4ME members could do? Those who know themselves to be robust enough to deal with mild/short-lived/spaced-out orthostatic challenge?

The CBT/GET paradigm fails because it denies/underestimates the illness... this leads to unrealistic targets for total amount of activity, unrealistic targets for increasing activity, and the fixed belief that improvement is always possible, and the body's feedback being ignored because there is an assumption of false perception.

I suggest a different approach, where the goal is not to restore work capacity or meet some exercise target, but to find the balance between activity and rest that feels best for the body. The self-improvement mindset says that we must challenge ourselves to make progress, but that is simplistic. Challenging ourselves with the best intentions and expecting a positive outcome merely because we have challenged ourselves is not good enough. That can easily make things worse. A little bit of stress is a positive stimulus, too much causes harm. We must find out through trial and error which things respond positively to stimuli small enough to not pose a risk of long term worsening. Some things, like ability to spend time upright may improve, others may not. We must find out what is modifiable and what is not and focus on the modifiable aspects. The things we cannot improve, we must learn to live with and there must be a willingness to accept this reality.

I don't think we need activity trackers. Listening to the body while experimenting with different patterns, amounts, types of activity and rest is better so that we develop a sense of listening to the body's feedback. Patients should be given information that describes what problems they may be dealing with (such as PEM, OI, poor sleep quality, etc), and what things they can try, and instructions to listen to their body and trying to work out what feels best.

It is of vital importance to take into account the breadth of the spectrum of severity. Activity is intentionally left undefined because it can mean vastly different things, depending on the severity of the illness.
 
Last edited:
And now you've learned the name of another of your symptoms :( which might be helpful :).

Orthostatic intolerance is one of the concepts I wish I had had explained to me when my ME was first diagnosed. For me I was at least fifteen years into my ME before I could start making sense of the variations in my condition involving and interplay between delayed PEM, sensory intolerances, food intolerances and orthostatic intolerance.

Certainly without these concepts it is much harder to attempt to manage our condition.

It may be that food intolerances are not ubiquitous in ME/CFS, though much more likely than in the general population, however the other three are likely to some degree or other to be ubiquitous.
 
The CBT/GET paradigm fails because it denies/underestimates the illness... this leads to unrealistic targets for total amount of activity, unrealistic targets for increasing activity, and the fixed belief that improvement is always possible, and the body's feedback being ignored because there is an assumption of false perception.
I agree.
I suggest a different approach, where the goal is not to restore work capacity or meet some exercise target, but to find the balance between activity and rest that feels best for the body.
Here, for OI, I'm not so sure that what feels best for the body in the immediate short term is what will help us in the long term. I'd certainly agree with the need to be ultra, ultra careful in even the slightest degree of pushing through but I think this is where we simply don't know the answer to the question.

How can we find out, scientifically, and move away from our own anecdotal natural histories (including mine)?
 
Orthostatic intolerance is one of the concepts I wish I had had explained to me when my ME was first diagnosed.
I was specifically told by a GP many years ago now that I didn't have OI because I didn't have any other symptoms other than intensely "wanting" to lie down flat for 15 or 20 minutes, which I can generally do when I need to. This GP told me that OI has definite symptoms (dizziness, increased BP, feeling faint etc.) which I don't have. I can't believe it has taken this long to find out this isn't true. Not that it would have made any difference to me, being mild then and now moderate.
 
Last edited:
I have "almost-POTS", I only meet the criteria on some days. Currently take propranolol, which has helped my symptoms overall, but not necessarily OI. It completely got rid of headaches when standing!
I can stand without any problems for 30 seconds or so, but after that I start feeling very fatigued and my leg muscles get the "flu pain". A few years ago this pain would have persisted and turned into PEM, but if I lay down quickly the pain goes away in a few minutes.



I have met people with ME that have completely "opposite" types of dysautonomia, orthostatic hypertension, orthostatic hypotension, POTS.. But whatever the cause, they all seem to have similar symptoms, and the same things they try seem to help (more fluids, salt, compression). Not the most scientific, but it's so interesting to me! it's like the body reacts in a different way to exactly the same cause in different people.
 
Thanks, everybody, for your stories. This is clearly a big problem for a lot of people, and manifests in different ways.

But I'd like to focus more on the question posed for the thread, which is, how can we move knowledge forward on this? What's wrong with the science so far and what would move the field forward for PwME with OI?
 
But I'd like to focus more on the question posed for the thread, which is, how can we move knowledge forward on this? What's wrong with the science so far and what would move the field forward for PwME with OI?
We could measure things like ability of blood vessels to respond to changes in posture, steps per day and activity patterns, endothelial function and health. These, together with PROMS might be enough to obtain indirect evidence of efficacy for some intervention, but it would be costly and difficult to fund when the intervention is not a commercial product or service.

I remember that wearable devices that make it easy to measure cerebral blood flow are being developed and they could be ideal.
 
Last edited:
Back
Top Bottom