Have you limited your activity more than you needed to?

Thanks for asking @dave30th and thanks for setting up the poll @Hutan.

Maybe worthwhile to add questions on how long was the longest period people had without experiencing PEM?

Not sure I ever experienced a period without PEM for more than 3 consecutive days. Maybe when I was much milder, but can't recall now.

Now it's usually not more than for 1 day. When I'm having a good phase, that happens maybe 2-3 times a month. Very rarely I have two consecutive days without PEM.

There's a huge variety in the severity and lasting of PEM though. In my c, can last for days, for weeks or for months.

 

I think the following scenario is uncommon, but it could explain some claimed observations in things like brain-retraining/LP. (As previously discussed, it's difficult to judge that context when the pwME is encouraged to lie to themselves and others about recovery.)

We know that after say 2-3 years, there is a small percentage of spontaneous recovery. People vary with how effective they are with pacing and most of us "fail" due to the necessities of life and desire to live it, so experience overdoing it and incite episodes of PEM. This tells us we're still in the pathological state and this is likely the case for the vast majority of pwME. Some people could be in a well-supported situation where they are generally able to pace well and I'm probably in that boat. So in theory a spontaneous recovery could occur while remaining unrecognised for some unspecified period. The person continues to pace but no longer needs to. Later, something unusual for their daily life pattern happens that shows them they are no longer PEM-restricted with a need to PACE. That something could even be LP in a proportion of those submitting themselves to it. (This is a bit different to the Garner situation where spontaneous recovery was pretty rapid, occurring over a few months even while off diving in the Bahamas.)

For the above scenario to happen a few things would also need to be true, including not being severely affected. Any other symptoms that continue despite recovery being unrelated to PEM & ME/CFS itself, but are affected by the previously enforced pacing. This could be something like microcirculatory performance in the feet. Eg imagine going for a bit of a walk after being bed/housebound - that might induce a burning sensation (as felt with going from cold to hot bath), which might quickly respond to the training of continuing to walk more freely. The low blood volume that occurs with inactivity might have been generated by other mechanisms in ME/CFS itself (ie not deconditioning), yet not be reversed until more activity resumes (ie in the absence of that primary driver, deconditioning takes over as an ongoing cause). So orthostatic intolerance symptoms might not correct until the person "pushes through" an established PEM barrier that no longer exists. Maybe some of the neurological symptoms could go along with that as cerebral blood flow returns to constant homeostatic norm.

That of course relates to an aspect of the BPS mantra, at least the perpetuating part. It's just that their predisposing/precipitating formulation is wrong and irrelevant — and even the perpetuation in their terms is incorrect because it's not abnormal illness beliefs when you you actually have (or even had) a biological disease, albeit with pathophysiology that is incompletely characterised to date.

I think this is a possibility but I imagine it would be uncommon. The implication that we should perhaps be frequently testing our PEM thresholds sounds like a bad idea, likely to result in worsening status for some. It would of course be fine if we had the relevant diagnostic to say "still got it" vs "recovery profile". An example might be in the form of analysing mitochondrial performance (eg well coupled ATP generation vs ROS) in blood cells. But maybe a more straightforward marker may be found (eg some specific micro-RNA profile). Then pwME could have a semi-annual check and in this way even if an effective therapeutic wasn't also quickly forthcoming, a diagnostic resulting from new mechanistic understanding might possibly help an additional small proportion of people recover function and their lives safely.

 

I think the question for many pwME is somehow wrong or misapplied. A PEM threshold is not necessarily set; it can vary. So a limit that you observe one day may not apply in 30 days. I can shuffle around some days for over 20 minutes, but on others, such an extravagance can result in bad stuff.

So we learn the hard way to live by rules of thumb that may or may not squander ability. If it turns out on a given day you can produce more than usual without incurring PEM, that's a gift. Personally I don't tempt fate by trying for more gifts than might come purely out of serendipity, even though that might seem reasonable if it simply reduces to a roll of the dice. That's a gambit and a greed I've learned to live without because the penalties that come with exceeding PEM thresholds can be unforgiving.

 

I rarely limit myself to this. But this. All of this. So much this. The very concept that we would ever do too little is frankly silly when the most basic needs of normal life are already far too much to handle.

 

Agree with everything people have said here. I can’t imagine “doing too little” – the endless struggle is against doing too much. Especially when doing too much can mean standing up to brush my teeth, or getting myself a bowl of cereal. And there are endless temptations to do too much – to talk with someone a little bit longer, or to get up and do something when resting doesn’t seem to bring any relief, to stay on my phone for a few more minutes.

 

Gotta say, I laughed after I voted no and the results of 34 no's and 1 yes popped up.

I do sometimes worry about if I'm underdoing it, but every time I push it, it's too much. I'm quite a restless person so it takes willpower to *not* do things that will cause crashes.

Edit: But also, a year is a really long time to not notice your threshold has improved. Pretty much anyone will have to do exertion that they can't get out of, probably many times over the course of a year. Even if just "exertion" that is excessive stimulation for bedbound people. They'd know they had improved in those cases if they really had improved.

 

I think the best heuristic to get this idea across to laypersons must be if they’d been in a bad situation during lockdown. Particularly if any of them were alone and found they eg had a period of time where their normal friendship group all got busy or rubbish and didn’t answer the phone.

that excruciating compulsion of I don’t know whether it’s loneliness or another term for deprivation of human contact that just screams in your body.

well when you are ill enough as us it’s everything. Like having to learn how to lie in your own dirt desperate for a shower a wait those extra days as you know you’d fail a shower and not having human contact or having it and being desperate to stay on that phone longer or being desperate to watch a tv or screen for it or to move a body part or look out the window

we get the same wanting to enjoy that one sunny day but can’t even get to the window to see it as a compromise

I think people think that goes away a bit like some seem to assume people with terrible pain get used to it if they have it longer but it actually builds up as worse instead and it’s just the tools and tricks you use to try and stay sane but in our case also calm enough our body isn’t affected pulling against each other - which requires determination and strength too.

Often the dam breaks and you do something with consequences just because you can’t not for a moment you’ve ’had Enough’

this would be so regular if someone could imagine being in this situation by trying to relate it to an extreme form of that lockdown thing (visceral) that if it didn’t give you the nasty payback at the level you were expecting (but nearly always underestimate- I assume like the childbirth thing of you never fully remember how bad it is until it happens again then it’s oh too familiar) you’d innately adjust. Know there was that sneaky leeway.

I’m trying to remember when I’ve been at other levels and I was always in PEM - I don’t know if it would have been different if I was a different age and opportunities that came up were different and things I’d done before or longer friendships or future in a different place. Or if I’d had very different support and situation vs my level (I’ve never been less than moderate which meant an either/or in this last few decades generation on social vs keeping a job or completing a course even to the minimum and all of those had massive implications for the future if you can’t do those to a minimum yet I had no option to stretch to any way of ticking both enough to even trundle them or keep them on a back burner without being in permanent PEM - I suspect I couldn’t even really do one without it)

 

100%.

And it's a normal, positive response. Given half the chance, people with ME/CFS want to work and learn and volunteer. We want to spend time with our families and friends, and do enjoyable recreational things. It's the reason we keep trying to shoehorn bits of extra activity into whatever capacity we have—and why the whole BPS fabulation is so bloody insulting.

 

I just don't understand this question. At all. How is it even possible to not try and do more as a natural process.

I can't believe we are wasting our precious energy debating this crap for the handful of very rare cases that get better through resting and don't realise that they can do more. They probably got better through resting and it was then that they tried to do more and realised they could. Ugh.

Thank you for this thread Neil Riley.

 

That was pretty much the extent of the information. I don't really know more. Apparently, there was little or no testing of the PEM threshold over the years, so it sounds like that would be rather unusual, if what people here say is the norml.

 

Agree but was there any generation years back where this was enforced on people that I’ve missed much like there has wanted to be ‘helpful’ micromanagement suggestions of timetables from certain people getting the wrong end of the stick and thinking literally we instead of getting fluctuating symptoms are fluctuating our activities and the issue is ourselves and not managing ourselves properly (with a big question mark about them not really being sure there is a physical illness causing the payback) I can imagine the potential for that misguided removal of autonomy in some dark days way back just don’t know if it ever existed.

of course the message is don’t remove autonomy and never undermine that with delusion we don’t have insight so our words can be ignored as madness or ‘don’t know their own body/we know better’ - although things have been so bad on that latter one it’s begging to be treated as humans for the first time ‘can we have acknowledgement what we say is correct’ just like everyone else should have a right to too.

I’m actually intrigued by such reports to know the detail of each case not to criticise but to see if it’s so far back when they started believing it and maybe it’s more badly-worded and the ambiguous word of regret means not ‘I wish I did’ but ‘I wish I could have been able to’, and how accurate that memory could be.

Given how can someone know they were more well for quite a time AND ALSO at the same time not have known - because those two conditions would have to be true in the situation explained. The test was doing something at x time. But the conclusion is then extrapolated to x - 365days time (but went untested at that point).

I’m probably missing the important detail or clues as to how that back calculation could be made

I’m assuming it’s because the actual illness is like acceleration vs speed in that you can only say improve when looking at 12months of activity vs deterioration or not, and somehow comparing that ‘number’ to a different 12months.

I’ve never actually experienced going ‘up’ in this , perhaps not even had a year not going down.

then layer on looking back at that and if ‘out of the worst of it’ then that’s when the grief of having been through it can hit (because whilst in it you can’t let yourself break) and all the loss.

however if eg they were bedbound for a long time and are now many years on from their initial increase I guess the one thing that is accurate is that wasn’t a wrong guess from them ie it wasn’t ’too early’ because it didn’t kick them in the bum 12months later. But then we aren’t taking a sample and listening to all just the ones who survived and didn’t end up worse.

so for this niche of people it feels from the info they provide a bit of a schroedibgers cat conclusion when they suggest doing that even 6months earlier would have resulted in their same outcome. But people normally/often have some reason for thinking this other than hindsight of ‘perhaps I could have’. Eg signs of healing that had happened in that preceding x time - and maybe they are wrong or right that if they’d interrupted that it would have ended the same.

But if they did have any precise detail to provide it’s not science but we might at least have fag packet chance of those who ‘thought they were ready but failed’ perhaps because they also detected similar things but did it too early triangulation to something that makes for more of a weak but potential anecdotal clue. Say if as a silly example you start tasting things better then your toes go cold you are on the mend but need to wait until birdsong sounds nice and you can start the Lazarus path

but I can understand why we don’t have all this info. Because we are all so ill and have so many things that are affected by others how did they know those were relevant when their job at the time was to endure and taking such notes mightnt yield anything consistent across people anyway. And all the rest.

 

Thanks to all for your thoughts on this!

 

I dream of a sanatorium, I read too much of the Chalet School books as a child! A place where you go for 6 months to rest, relax, take the air and the waters, read, sleep.

 

It’s a fundamental (and I think deliberate in a way which says about then ‘always looking for the worst and most insulting in people’ despite them often sing-singing when it’s fair critique of something affecting us not them ‘to only be nice’) misunderstanding of the condition and choosing to overrule someone’s autonomy of their own eyes behind it.

it’s people actually saying ‘they don’t know their own body, mind, observation’ from people lying pretending ‘we aren’t saying you are hysterical or deluded’ taking away human rights at a micro-level and removing someone from their own life. It makes my jaw drop.

but yes the fundamental weird thing about me/cfs is that whoever we are our body allows us to do things that in the fullness turn out to lead to harm. Totally different to most illness concepts of ‘can’t because it will hurt’. Until you get really severe then we are doubted on our ‘Cants’

but they are also things we should have the same as anyone else to expect to do and be able to flag as illness when we get those symptoms from. And that’s where REALLY is the pinpoint of what underlies this. All the flounce is about if it’s this illness you have no rights. It’s like our body AND mind are seen as a vassal to them. But then hiding this value underlying it in tosh to try and make it seem like it makes sense.

The thing is that really unless you are one of the pwme who get suddenly very severe we actually act and behave no differently to anyone. Then get some killer symptoms from it. And they don’t want to care. So it accelerates until they can claim the symptoms are behaviour (which sadly is what I read is the sleight of hand in the pushing of the SSD somatic symptom disorder major issue for mental health law vs human rights)

their misunderstanding is just them trying to ignore the fact that it happens after - attacking PEM. It absoluall relies on labelling us as liars and deluded with that last one covering their backside when it’s clear our body is shot to pretend the lies/delusion somehow magicall can cause it. All just so they don’t have to stop reactionaries arguing and just take a proper look. It’s like people stuck in an argument unable to look out.


I think this ‘recovery narrative’ is incredibly insidious and cynical because it’s now trying to repeat history by turning the cart before horse issue they have on its head by reversing the context. So they can repeat the same sophist going it looks ‘fresh’

And they do love a good retrospective in their research because it has no good way of doing it in the first place unlike trials. So cherrypicking your sample is merely on a scale of how cherrypicked.

but this is worse because somehow what actually happened is someone rested then got well as demonstrated by function. And they are trying to fill that gap with a ‘what if’ in this situation that wasn’t tested.

in actuality it’s as grim as someone holding up someone who recovered their cancer by avoiding medical treatment as if it were an example to be followed. And those happen too.

but then using their own story when they did have eg chemo and recovered to suggest maybe they would have recovered with less chemo. Which just doesn’t happen /I haven’t seen.

 

It's hard for me to understand the circumstances that would allow for lowering of activities for a whole year and not accidentally challenging it or being forced to challenge it.

It would need a situation where all if the persons needs are being met with no visits to a doctor or unexpected demands.

Combine that with such discipline that they could always know exactly when to stop any activity and always have their PEM limit exactly the same.

 

This question relies on an unproven model of hoe PEM works. For those lucky enough to have care arrangements that make intensive resting possible, it may be the case that after a prolonged period of rest followed by new pressure to exert, the pressure reveals a significant improvement in PEM and other symptoms. But that doesn’t mean that activity was excessively limited previously. We don’t know that ME/CFS is only exacerbated by obvious PEM. It may be that extended periods of activity well below an obvious PEM threshold can promote recovery in a way which remaining within envelope alone cannot.

My N=1 is that this is absolutely the case. I was lucky enough to have an extended period of over a year where I had very significant care and relatively little PEM, remaining well under my PEM threshold. The result was major improvement. I don’t think it meant I rested too long. I did it deliberately to see what would happen, and it actually helped a lot - unlike GET, CBT, etc.

For me edge-of-the-envelope pacing is a maintenance strategy. Way-within-the-envelope pacing is an improvement strategy. If only patients in general had the support to test this for themselves, and if only society had used some of the millions wasted on snake oil to test how pacing works best.

 

Precisely.

My understanding of ME/CFS and PEM is that everybody can reliably produce PEM if they wanted to. They will typically often produce it without wanting to, to be able to do basic activities that make life worthwhile or simply necessary activities to stay alive. What they cannot do is reliably avoid it at all times. A ring on the doorbell, an unexpected doctors visit etc and probably more importantly just natural variation and variability both in what humans do and possibly also variation in what it takes to trigger PEM. Thinking of an imaginary threshold as some fixed line might be helpful in trying to explain ME/CFS to certain people, but I don't think there is any evidence to suggest that this is how thinks work in ME/CFS.

I find it less likely that someone would be able to avoid some sort of imaginary threshold line for which there is no evidence to suggest that it is somehow fixated at some level for several years and that it then disappeared. As @SNT Gatchaman has eludicated it's probably more likely that for whatever reason things have improved and as such one doesn't have ME/CFS anymore. Even if you're still limiting your activities more than necessary, you might not notice that all of a sudden you're able to go answer the doorbell as you please or stand up and walk to kitchen and make a meal without repercussion. Now it's possible and probably very reasonable that there will be people that for some limited amount of time will still avoid certain activities given their past experiences, like going for a run, even though they could, but I'd think most people will just resume their lives and activities at a normal level they enjoy, once they realise they don't experience PEM anymore, which I can imagine only very few people will take several years to figure out (there could be complex situations where maybe someone doesn't experience PEM anymore but still experiences OI, cognitive problems, sleep problems, muscle pain, problems related to deconditioning etc so that things will take a long time to become clearer).

 

Going by the testimony of the majority, it doesn't.

It might appear to, as people are only monitored for a short period in trials and most of them are at the mildest end of the spectrum. But some fluctuations in capacity occur over periods of months and years, as well as hours, days and weeks. It's not always clear whether they were influenced by activity or life events, or whether they would have happened anyway.

If we were monitored by specialists, like people with respectable illnesses, we might have learned more about it by now.