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

[Peter T]

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?

I would argue we need a clearer idea of what the range of orthostatic issues are for people with ME/CFS and I would like an observational study perhaps including a tilt table test and measurements of cerebral profusion(?). Do we adequately understand what the clinical presentations are?

I have never asked my GP to investigate my orthostatic issues, partly because awareness of them just crept up on me over a number of years, leaving me assuming that it is ‘just part of having ME’ and partly because when they were at their worst attending an out patient clinic was not an option for me. I would like some discussion of when or if we should raise OI with our doctors.

Then there are the current remedies of increasing salt intake in various ways, use of compression garments and medication(?). Even when I was very fit, regularly hill walking and training as a yoga teacher my core muscles were never the best, could some muscle strengthening and/or weight loss help, though this may not be an option because of the ME. We could do a series of polls to see what members have tried and what if any they found helpful; which could be used to suggest some form of experimental evaluation?

What are good objective measures of OI: tilt table test, activity levels, time spent lying doing, etc?

Are some form of circulation issues the most likely mechanism or do we have evidence for alternative explanations, are we anywhere near having models that could be experimentally evaluated?

[Added - this is partly a standard PhD format - a literature search and description of the problem, followed by a hypothesis which is then experimentally evaluated.]

 

[Chandelier]

I would argue we need a clearer idea of what the range of orthostatic issues are for people with ME/CFS

What are good objective measures of OI

I’m trying to think of a feature of OI that shows up universally and is objectifiable:
Doesn’t every sufferer report that they are able to do more cognitively while laying down?
This might be measurable via cognitive tests when comparing performances while standing upright vs. laying down?

 

[JemPD]

I agreed with @Sasha on another thread that it'd be good to have a discussion about this to pad out our knowledge more, in a place where we needn't feel so defended against ignorance driven 'lying down too much is dangerous' type messages.

Like @oldtimer I dont have any science knowledge at all either (- but then thats why I like S4 - because I dont! But I know people here will challenge BS so I can feel safe from it lol). Therefore I dont think I can be much help in a discussion about how to move on.

But I really struggling at the moment with a lot going on in my life (essential building work on house & medical appts), that I dont have a choice about, which is making me repeatedly crash, so not sure I'll be able to read or input much.

TBH I shouldnt even really be spending energy posting, but this feels so important as it's something thats worrying me a lot currently. Because the repeateded forcing into major PEM crashes is making me need to lie flat a lot more, and for a lot longer without breaks of 'sitting up in bed for a bit' (ie reclining at roughly 20/30 degrees). So I'd very much like to know whether I'm helping myself trying to sit up as much as possible, or whether it'd be better if I just always gave in to the urge to be flat.

ie... Which thing will help me the most.

So I'd like to know more about...

a) exactly what are the physiological negative effects of lying flat in the way that I do.... Meaning the kind of lying flat that most PwME at the moderate/middle end of severe do. Ie confined to bed or sofa all the time but with head on 1 or 2 pillows, & staggering a couple of times an hour to a bathroom roughly 4m away (bed to toilet).

I'm aware of NASA studies where they're not allowed to sit up at all for weeks & some where they're even slightly inverted, but thats not the same thing.

Do we have ANY scientific or even vaguely good methodology accounts of the 'getting up now & then throughout the day' type of lying flat?

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.

What do you mean by 'a bit' - 30 seconds, 5 mins, 10 mins etc, & when you say it's "enough to mitigate" on what do you base that reasoning (not disgreeing Hoopoe, just wondering what underpins that statement)?

I find it distressing at times that I dont know how to help myself, and the fact that the NHS simply cannot understand that I cant actually go to 3 appointments per month without making myself desperately ill, and their policies mean if you dont go for a test/appt within a certain time frame you get discharged, means that I've been repeatedly faced with the choice of causing a crash leading to wks of lying flat without a break, or sacrificing some other potentially serious aspect of my health.

So it becomes a total conundrum as to what to do inbetween these ruddy awful challenges, do I lay flat for as long as I can in order to rest & recover fastest - which then leads to it being harder to be "upright" (I use cushions in my wheelchair to make it semi-reclined & always put feet up on something) when I next need to be.

Or do I try to sit up in bed a little, even for a few mins whenever it's even remotely do-able... or will this delay my recovery....???????????

I just get so upset by the conflicting advice out there. None of it seems to be based on sound & applicable science.

 

[Peter T]

@JemPD, I understand your frustration. After all this time medicine has not even got answers to the simplest questions because in general they have either not believed us or have been obsessed with looking in the wrong place.

Take care, we have so little spare capacity.

 

[Kitty]

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.

It's an interesting question, but until someone shows OI is a thing on its own I don't see any reason to separate it from the other symptoms.

Given the level of difficulty we have tolerating activity and sensory stimuli, why would we think difficulty tolerating being upright is different?

All these symptoms are seen when people feel very unwell for any reason, it's just that they normally last for hours or days rather than decades. I'd be wary of treating one of them differently without evidence it's not driven by the same signalling malfunction.

I'd also ask why it should be amenable to rehab in a way the other symptoms aren't.

Lying down might well make OI worse, it has all kinds of negative effects. But if we're not arguing people should push themselves into PEM by sitting or standing up to strengthen their muscles, it seems odd to think it might be useful to do it for OI.


ETA: sorry, I got interrupted by the postman...meant to finish by saying I think we'll get the science on OI when we get the science on ME/CFS.

 

[JemPD]

However I assumed this related somehow to physical effort

Yes me too.
My urge to lie flat, feels pretty much exactly the same as the urge to stop during whatever else I'm doing - dizzy weak, faint, nausea, poor coordination, total cognitive inability etc.
Sitting, sitting with feet up, sitting with feet up head supported, reclined with feet up head supported, lying flat, all bring different degrees of relief.

And I have noticed, in a way that I'd never have been able to sense when I was well, that everything except lying flat, involves some degree of muscle activity/exertion. Holding self upright in a chair, even a chair with arms, involves a degree of muscle tension -when I lie flat i can feel all the muscles in my torso relax.

People without ME have the sense that sitiing in an armchair is the smae as lying down, but i dont think it is, you just dont realise that until even the slightest movement of your hand becomes like a healthy person's 20kg lift.

 

[JemPD]

Also want to throw this thought into the mix...

My experience is that when well rested - ie after lying flat with minimal cognitive activity almost constantly for a couple of wks or so, I am able to tolerate some upright (well less flat) positioning for a while, even getting to the bathroom becomes less of a struggle - i can get there, wash hands, sit & brush my teeth, & dont start to get dizzy/weak etc until I get back.

But during PEM it kicks in before I even stand up - to the point I have to crawl.

So if lying flat were as much of a problem as it's made out to be, then why can I tolerate more uprightness after a period of lying flat, than after a period of being more upright?!

Sorry @Sasha none of my posts really help us move on, but perhaps something around this last point could be organised - some kind of recording of data where we record to get a sense of whether this is the norm for us all or???

I dont know how & I've spent more than my ration on these posts so wont be able to respond for a while & have to save my cognitive abilities for other stuff now. I hope the collective intelligence of S4 can come up with something to move us forward

 

[JemPD]

It's an interesting question, but until someone shows OI is a thing on its own I don't see any reason to separate it from the other symptoms.

Given the level of difficulty we have tolerating activity and sensory stimuli, why would we think difficulty tolerating being upright is different?

All these symptoms are seen when people feel very unwell for any reason, it's just that they normally last for hours or days rather than decades. I'd be wary of treating one of them differently without evidence it's not driven by the same signalling malfunction.

I'd also ask why it should be amenable to rehab in a way the other symptoms aren't.

Lying down might well make OI worse, it has all kinds of negative effects. But if we're not arguing people should push themselves into PEM by sitting or standing up to strengthen their muscles, it seems odd to think it might be useful to do it for OI.


ETA: sorry, I got interrupted by the postman...meant to finish by saying I think we'll get the science on OI when we get the science on ME/CFS.

Oh for goodness sake, thats so obviouswhy dodnt i think of it. Good, I'll relax about it then. I remember having flu at work and being desperate to lie down rather than just sit in the recliner chair we had.

 

[Kiristar]

I couldn’t find any information about that, how does the pixie position look?

Legs raised and drawn in a bit, I think it comes from typical depictions of a pixie sitting on a toadstool.

 

[V.R.T.]

Lying down might well make OI worse, it has all kinds of negative effects. But if we're not arguing people should push themselves into PEM by sitting or standing up to strengthen their muscles, it seems odd to think it might be useful to do it for OI.

This is the core of the matter in my opinion. I don't see any reason to treat OI as a special case where the BACME approach of encoraging to do more might actually apply. And i think treating it that way runs the risk of legitimising their approach.

 

[Sasha]

It's an interesting question, but until someone shows OI is a thing on its own I don't see any reason to separate it from the other symptoms.

Given the level of difficulty we have tolerating activity and sensory stimuli, why would we think difficulty tolerating being upright is different?

This is the million dollar question but I think it's one worth asking, and I don't think we can assume that intolerance of activity, sensory stimuli and upright posture are all part of the same biological driver. For example, I can't tolerate much activity but I've got zero problem with sensory stimuli. So these systems being subject to the same signalling malfunction doesn't seem to be happening, at least for me.

On another thread, we had:

One thing that I think is important to consider is that if people with ME/CFS do have low blood volume I think much the most plausible explanation for that is that they have been recumbent much of the time. Lying down produces quite major changes in fluid, oncotic and haemodynamic physiology. So lying down may not be a good thing to encourage people with ME/CFS to do.

I think we'll get the science on OI when we get the science on ME/CFS.

I hope so!

 

[Sasha]

This is the core of the matter in my opinion. I don't see any reason to treat OI as a special case where the BACME approach of encoraging to do more might actually apply. And i think treating it that way runs the risk of legitimising their approach.

I understand that fear but I'd like to see us address this question without the fear of the politics. I don't like to see an important question that can't be raised on a science forum. And TBH I don't think BACME need their approach legitimising. They carry on even when the science absolutely flattens their approach.

 

[Sasha]

But would people prefer this thread to be in the members-only part of the forum? If so, please 'Like' this post and if quite a few want it, I'll ask the mods to move the thread.

[Edit: Thanks, folks, I'm seeing 'likes' so I've asked the mods to move the thread. If they agree, it might take a little time.}

 

[V.R.T.]

I understand that fear but I'd like to see us address this question without the fear of the politics. I don't like to see an important question that can't be raised on a science forum. And TBH I don't think BACME need their approach legitimising. They carry on even when the science absolutely flattens their approach.

Okay yeah agreed on my second point. But on my first point i just really dont see it as separate from for example, being told to stand up for a little bit longer every day or to do a few reps of x exercise. Isn't it just the same thing? We lie flat because our bodies force us to, just as we stay still, or we don't run, or we use mobility aids. The idea that we could choose to be upright more without negative consequences is an outside belief imposed onto our experiences.

I was on a sofa to eat my dinner last night, rather than reclined in an armchair with a stool or propped up in bed. And i kept sitting up to eat a few mouthfuls and then lying down again because i can't hold my body upright for more than a minute or two. In the exact same way that i couldn't apply enough force to close my old penknife yesterday when i found that.

I understand there are unique negative consequences to being horizontal. But i don't see how OI is meaningfully different to any other thing that causes PEM in how it should be approached.

 

[Hoopoe]

What do you mean by 'a bit' - 30 seconds, 5 mins, 10 mins etc, & when you say it's "enough to mitigate" on what do you base that reasoning (not disgreeing Hoopoe, just wondering what underpins that statement)?

I base this mostly on my experience.

There was a big difference between lying horizontally all day without time upright, and with time upright. Adding a little time upright during the day was enough to prevent the worst effects. There was also a difference between sitting all day, and sitting all day and taking horizontal rest breaks, which was much better. It seems that doing the same thing all day without change in posture and activity is just bad. Alternating and paying attention to the body to find the right balance seems like a good strategy.

There are also graphs showing the relationship between minutes of exercise per week and mortality which show that each additional minute of exercise adds a little less benefit than the previous one. Not much is needed to see substantial effects, and more is better until a relatively high threshold.

We don't know how the illness affects these dynamics but in my case I found that the amount of activity and time upright needed to improve my fitness was below the "unsustainable stress" threshold. In other words, a little stress was okay. Too much was not, but a little was enough to improve my fitness and manage OI.

With OI the benefit was fairly clear, with PEM it was not. PEM also improved over time, but not linearly and predictably and quickly like the OI. I remember spending a year just doing my usual routine of 30 minutes walk per day and not noticing any difference with PEM. Then I was suddenly able to double my walking duration. I understand that I'm lucky to not be as severely affected as others.

 

[Sasha]

Okay yeah agreed on my second point. But on my first point i just really dont see it as separate from for example, being told to stand up for a little bit longer every day or to do a few reps of x exercise. Isn't it just the same thing? We lie flat because our bodies force us to, just as we stay still, or we don't run, or we use mobility aids. The idea that we could choose to be upright more without negative consequences is an outside belief imposed onto our experiences.

I think it's important to separate the idea from where it might or might not come from, and separate the notion of a 'question' from a 'belief'.

I don't believe that we can train ourselves out of our OI, or even improve it - and I also don't not believe that. I simply have it as a question. I don't care whether BPS people have a fixed belief about it - I want the question answered empirically.

Some of us have a bit of slack in when we lie down. For example, I'd rather be lying down now but an extra minute won't make much difference. Is there scope within that slack to gradually change my haemodynamics? I don't know, but I don't want to let the fear of BPS proponents stop me finding out about something that might lessen my disability. I don't want to give them that power.

 

[Sasha]

With OI the benefit was fairly clear, with PEM it was not. PEM also improved over time, but not linearly and predictably and quickly like the OI. I remember spending a year just doing my usual routine of 30 minutes walk per day and not noticing any difference with PEM. Then I was suddenly able to double my walking duration. I understand that I'm lucky to not be as severely affected as others.

If improvement through changing our behaviour is possible (and it may not be, when properly tested), it wouldn't surprise me if it doesn't apply to all PwME and might related to severity, among other things. I think it's important to not rule the concept in or out based on our own individual experience, therefore.

BTW, I understand that this whole thing is a difficult conversation and I have hesitated for months before posting about it. I'm grateful to everyone here who is engaging and contributing to the discussion.

 

[Sasha]

Forgot to mention that I saw the 'likes' on my post about moving the thread to the members-only bit of the forum so I've flagged that to the mods. It may take a while.