Have you limited your activity more than you needed to?

[Kitty]

I just wanted to chime in that it's not necessarily the PEM threshold that is lowered, but that one is in an environment that uses up more energy

That's an interesting point. There's also something about unfamiliar sensory environments being much more draining than familiar ones.

 

[Turtle]

The opposite for me. I'm doing better in winter. I even put my room temperature on 16 C, helps my brainfog. To keep the rest of my body warm I use warm clothes, several layers if needed.

No way I would wait to try things to see if I had improved, impatience grows after 33 years.

 

[Trish]

If someone says, I rested for x years, then decided one day to test myself and found I could do more, there is no way of knowing whether that decision was influenced by the person's symptoms, even if subtly.

So it's quite possible they had just experienced a spontaneous improvement or recovery on that day, or x-y years earlier but hadn't noticed. Maybe the latter could happen, but there's no way of deciding retrospectively whether the person could have got out of bed x-y years earlier.

 

[bobbler]

That's an interesting point. There's also something about unfamiliar sensory environments being much more draining than familiar ones.

It’s an important point

I sort of get the points I think of all these people intuitively perhaps but I’m being pedantic doing mental gymnastics partly out of curiosity of the context (after all I’ve been a living n=1 science experiment all my life that noons wanted to hear the observations for) and I’m partly intrigued because it means different things depending on the context

if for example you take it as someone not at the severe end’ maybe mild if they can actually avoid PEM (I’ve never been able to for a week but I’ve always been moderate or more severe I think) then I’m imagining if they got through their studies before me/cfs they might be able to have a job with enough wiggle room to make the me/cfs work without riding/rolling PEM and basically accumulating it until break point where you could no longer pretend you can perform and needing annueal leave to return to function. Or maybe they use that and adjustments like some work from home to somehow avoid PEM.

but perhaps I guess it’s at the expense of what they’d like to do with their social life or sport - perhaps things they were used to having before that they notice. I guess it isn’t ’I could have started going to the supermarket weekly earlier’ that’s if mention?

I can see it being a perfectly harmless and understandable and useful pint to say their experience was they didn’t dare try eg sport until they’d felt well for a really long time. And there was no PEM at all - what a shock , so it’s ’gone?’ And given people are looking back they’ve gone through that 6-12 months down the road (where pushing thru at gym really hit me even if I’d given it up earlier) and then realised ‘it really is fine’

maybe that might be going for a few drinks or a cinema with increasingly sensory films

anyway @Midnattsol that’s a terrific point here because it’s not just the running vs running before (if that’s the example) if for example an food allergy has died down along with sensory sensitivity. And that cinema didn’t affect you as badly so you could put social things closer together. It is like a snowball when going down getting more ill and I guess the same the other way.


but you’ve got to keep the show on the road work wise so can’t just end up ill again and there is perhap an if only I’d known - so you have to keep an eye not just on did it give PEM but ‘am I coping’ at one of two months and so on.

it’s hard to imagine because of the types of job I did and culture it feels any available at the time would get sucked up by ‘events’ but I was never out of pem

Ive definitely never really been able to do eg after work drinks for an hour on a weekday as even in my gentlest job that was enough extra to definitely throw not just the week out but it’s hard to catch it back up. And a raise in workload could do the same and lead to disaster like sleeping thru alarms within weeks.

I can see how there are certain times in life where if you’d got advice saying be very careful even after you think you are ok that you’d think perhaps either you’d missed out or was it advice to others that you have to feel that you’ve been well fif quite a while before that magic happens where it turns out it’s not there anymore.

I’ve never been in that position so it’s interesting to imagine if my life might have been different.

I also don’t know if some had it more enforced and eg they might have missed out on career or family things that maybe might have been possible or maybe they were just on the other side of the coin to those with that child who wonders if they’d rested then they wouldn’t be disabled.

it’s intriguing

I’d like to know if any were recent because I get the sense that for decades now most in Uk wouldn’t have been allowed that rest but 3yrs sums wise is better than pushing someone and writing them off forever before they are 40. But I don’t know whether they were severe enough it needed that or they just had jobs that they had leverage to bend the hours of enough to be under whatever severity and other aspects of support and living were different

I guess the thing is are there any guarantees because the other thing is the pressure going on that you must get better too.

I’ll be honest I can’t get a proper handle on Neil’s story because the 1989 article feels different to what I sssumed was his story from the 2019 one. So it’s all a big guess there.

 

[MrMagoo]

If someone says, I rested for x years, then decided one day to test myself and found I could do more, there is no way of knowing whether that decision was influenced by the person's symptoms, even if subtly.

So it's quite possible they had just experienced a spontaneous improvement or recovery on that day, or x-y years earlier but hadn't noticed. Maybe the latter could happen, but there's no way of deciding retrospectively whether the person could have got out of bed x-y years earlier.

Yes, I know this is based on what some people have said to Dave30th, but I’d want to know why they felt they had been recovered longer than they had realised? Because it’s impossible to know!
Is it a “loaded” statement? As per BPS theory that “militant anti-recovery activists” have convinced people not to do anything and only rest?
Is it a thoughtless statement? Oh I just assumed I could have don’t this a year ago because I can do it now.
How are these people in the time after their discovery? Can they repeatedly do the thing without PEM? How often? Years later are they still doing the thing?

 

[bobbler]

The opposite for me. I'm doing better in winter. I even put my room temperature on 16 C, helps my brainfog. To keep the rest of my body warm I use warm clothes, several layers if needed.

No way I would wait to try things to see if I had improved, impatience grows after 33 years.

True but it we were talking about marathons I’d be waiting until I was pretty sure vs seeing people or a different place to the same house etc. and would probably build up from there just because of not wanting to get stranded even if I did keep ending up surprised

I guess there’s a different expectations thing when you are one side vs the other we forget and once used to having it all the idea you lived in worse than lockdown would seem awful whereas now being able to watch films with lots of friends seems like a treat

 

[Peter T]

No way I would wait to try things to see if I had improved, impatience grows after 33 years.

I find it relatively easy to rest when I experience extreme symptoms; I can lie motionless for hours at a time when I have a migraine and nausea such that trying to do anything is likely to result in collapsing or vomiting, however doing nothing when there are few or no symptoms as part of rationing activity in order to avoid triggering PEM is for me the hardest part of ME.

There may be some people who enjoy inactivity, for example my grandmother gave every impression of enjoying doing very little, though my memories of her were when she had long established Parkinson’s Disease, when she sat in her arm chair playing solitaire or watching the occasional TV program waiting for a cup of tea or a light meal to be brought. From others’ accounts she had formerly enjoyed the expat/colonial life style sitting on the veranda playing cards and chatting to other wives over tea or drinks brought at suitable intervals by servants. Her pleasures were being driven out into the countryside, taking afternoon tea in country house hotels or sitting in the car on the seafront watching the waves.

However her level of apparently voluntary inactivity would be a goal that many people with ME would aspire to build up to and required the support of a home help and a doting husband on a generous pension. Further she did not need to miss family funerals and weddings or just visiting her grandchildren in order to sustain her daily activities making it very different to inactivity imposed on us by our ME.

 

[Sly Saint]

there was little or no testing of the PEM threshold over the years

impossible if the pwME has no one to look after/do things for them.

Plus this continuous obsession with fixed baselines, fixed PEM levels , fixed amounts of activity , etc that you can measure and chart just doesn't work in the real world if you have ME.

 

[Keela Too]

I absolutely can’t help myself, and so fairly often I do more than I should.

For a few days in a row I might think “Wheeeeheeeee look at meeee!”

Then Bam! My body slams me back into my box!

Thankfully now, I can take a week’s rest (and maybe also a month or two of feeling I can only run at 90-95% of previous) and then my previous normal returns.

Try as I do, to never test my boundaries too much, I know I’ll soon forget myself again, and pretty soon be reminded once more that I have limits.

To accidentally stay below a limit that is not there is a totally foreign concept!!

If I have a few days without reminder symptoms through the day, I’m agoing to think I’m CURED! Wheeeeheeee Look at meeeeee!

Baboom! Box!

 

[Mij]

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

The 'yes' is me because I did intentionally limit my energy for 5-6 years doing ART after a relapse from returning to work. I thought it was what I needed to do. I improved a lot, but I don't think it was from resting. I just naturally got better, but delayed PEM was still severe when I started exercising.

 

[Mij]

The opposite for me. I'm doing better in winter. I even put my room temperature on 16 C, helps my brainfog. To keep the rest of my body warm I use warm clothes, several layers if needed.

Same. Colder temperatures can also help with orthostatic intolerance.

 

[MrMagoo]

The 'yes' is me because I did intentionally limit my energy for 5-6 years doing ART after a relapse from returning to work. I thought it was what I needed to do. I improved a lot, but I don't think it was from resting. I just naturally got better, but delayed PEM was still severe when I started exercising.

Did you rest because militant anti-recovery people hid the lightening process and GET from you, and forced you to rest?

 

[NelliePledge]

Deliberately went over my limit yesterday as I was visiting my 93 year old relative and had already cancelled at the weekend. I wasn’t good enough to drive myself so went in a taxi. I knew I would be rubbish today but went anyway. Can’t mess someone 93 about. How many more visits will I have…

Going out can take me over the limit because I’m already over it like yesterday. Or because although the situation is pretty familiar and adaptable to the activity lasts quite a few hours ie too long - this is most of my social activity. It’s hard to go out for a meal for say 90 minutes if people have traveled to come to see you and you should bring things to a conclusion but you don’t want to so you go on adrenaline.

the uncontrollable stuff is going out when it’s an unfamiliar location, building, people eg a medical appointment how easy is it to park nearby, how far is the walk down corridors, how long is the wait, what is the waiting room environment like, what is the reception set up like is there a queue , what is the person the appointment is with like, how much explaining will I have to do, will I be able to get myself home or do I need to be accompanied.


Everything has to be thought through and risk assessed and prioritised.

 

[Kitty]

Everything has to be thought through and risk assessed and prioritised.

Yeah, I've just spent half an hour on Google satellite maps, 'walking' the roads to plan a trip to a pub I haven't visited before. I've written down four parking options sorted order of both closeness and likelihood of availability, and a friend has sent me a video of the entrance and the corridor to the bar.

 

[MrMagoo]

Pubs and restaurants! Even if the loo is on the same floor it’s a long walk. IF (a big if)

 

[Kitty]

Even if the loo is on the same floor it’s a long walk.

It's even longer when you're brain fogged, and can't remember which of the fourteen doors you had to go through leads back to the bar...

 

[Midnattsol]

Same. Colder temperatures can also help with orthostatic intolerance.

For me constant temperature (not too hot) is fine, but going in/out of buildings in winter going from a heated area to cold is taxing. Around here the difference in temperature can be ~40 degrees C in winter between indoor and outdoor, though I'm not sure if how large the difference is important or if there's something else.

 

[Sean]

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.

+1

 

[shak8]

My mind so easily imagines doing a previous normal activity and I'll chastise myself into thinking that "if I just try" and that I've just not discovered the proper approach. That there must be a way, if only I...but no. There isn't. Not in this brain with this body.

Only a rejiggering of how to get the essentials done. And what was essential yesterday, I have to laugh. It's a game. Throw it out, bring it back.

Heading into Keela Too's box where inside there are splinters causing a sour mood, for having this illness which I truly hate having.

I'm working on my self-confidence of fully embracing, inhabiting my situation and an internal "screw what the normal can do, good for them." My little sliver of function is precious to me. I am different, so be it.

 

[Mij]

Did you rest because militant anti-recovery people hid the lightening process and GET from you, and forced you to rest?

I was advised a few times to 'do nothing' by an ME specialists early in my illness. I told him I had stuff to do and that I live alone so no one is going to do it for me. I remember laughing to myself when I left his clinic not understanding ME or PEM and as soon as I felt better I was going full speed ahead. I even bought a stairmaster.

So I got better after nine months of PVFS and relapsed 3 weeks later from returning to work. That was when I took his advice seriously and hired a homecare worker and rested for the next 5-6 yrs. I did feel better again but pretty sure it wasn't from all that resting.