Pacing - definitions and sources of information

@dangermouse this is the kind of pacing i use. it's 'Symptom Contingent' rather than 'Time Contingent'.

http://www.wames.org.uk/pacingweb.pdf

Ironically, a psychotherapist recommended it to me. It was back in 2003 before all this pollution of the term had really started. She recommended it to me as a way to maximise what i was able to do, & to prioritise the activities that were important to me. Before this i was wasting my strength on things that were not important & then being too ill to do the important stuff.
Being a person who at that time (newly diagnosed) had huge difficulties with the shame of stopping before truly exhausted (believing it to be lazy or 'negative' to rest before absolutely necessary), it was really helpful to change to this kind of management.

I've been using this method for 17yrs & remained pretty much stable overall, despite wild fluctuation in function/symptom severity. - Not saying that pacing in this way is what has kept me stable - there is no way of knowing. Just sharing my experience.

My 'aerobic' fitness has deteriorated a little over that time - i am definitely deconditioned & cant walk as far without getting out of breath as i could at the beginning - but this has come in stages after several extended periods of being forced (by life circumstances) into having to use all my energy cognitively & emotionally while bodily sedentary... i knew what was happening but i had no choice I'm afraid). And in order to get that fitness/conditioning back,(if that's even possible?), I would have to spend all my energy on bodily rather than cognitive stuff, which living alone without family, & having to administer my own life, is simply impossible.
 
@Hutan

Somehow I couldn't manage to quote your post but thanks for the :laugh:

I use a melita single cup filter for my coffee it takes a few minutes to drip. I'll have to make sure next time I'm in the kitchen that I get all the water through the filter before that extra minutes up. I'd hate to have to take a break and go back to cold coffee. :D

The most terrifying aspect to my mind is that the people writing this stuff take it seriously. It shows so little insight into being human I weep. We are drones to be programmed.

Well, I'll sign off now. So many species to assimilate.
 
strategist said:
Initially, when I rested and stayed at home, I did feel better, and thought this meant that I was well on the way to being cured and so tried to get back into my old life. This always resulted in a relapse. It seems that Action for ME is at a level of understanding where resting is recognized as helpful, but it hasn't yet become clear that this is a chronic condition, and that merely feeling better doesn't mean the illness is gone.
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That to me is the heart of it. Occasionally Mr Snowdrop asks how I'm doing. If I'm having a good day my answer is now 'less awful than usual'. He understands now. If I said to any family member before that I was having a good day they'd get all hopeful like I was good as new. I guess that's just how the mind works.

But as a charity AfME should know better by now. This is a serious illness. Having some rest and a good day doesn't mean I can pick up my bed and walk.
 
DokaGirl said:
@Esther12

Yes, pacing should not be promoted as rehabilitation, but as management. As you say, making life as good as possible though sick.

The question does arise however re those who recover, or nearly recover while using pacing, or whatever method. Do we know they meet the correct criteria? I'm not saying in this particular example you do not know if these people had ME.

I know of someone who was diagnosed with "cfs" who recovered after mostly bed rest for an extended period of time. And, yet, I am not entirely certain they had ME, even if it did sound like it.
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And we will keep being subjected to these distressing stories about magical recovery of people who go on to climb mountains so long as media, as a result of the BPS London group, insist on conflating chronic fatigue the symptom with ME.
This has been so harmful to us in so many ways.

Sorry, I'm wandering away from pacing the topic here. Will wander my way back . . .
 
Snowdrop said:
And we will keep being subjected to these distressing stories about magical recovery of people who go on to climb mountains so long as media, as a result of the BPS London group, insist on conflating chronic fatigue the symptom with ME.
This has been so harmful to us in so many ways.

Sorry, I'm wandering away from pacing the topic here. Will wander my way back . . .
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There is need to be cautious about statements like that. But I am sorry if I have distressed you.
 
chrisb said:
There is need to be cautious about statements like that. But I am sorry if I have distressed you.
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Hi @chrisb

Sorry to confuse--you didn't distress me at all. I find it distressing when this narrative is found in media as so many people see it and it's then the way the illness is perceived by many. Some of these people will cajole others they know to get up and get better or they've become commenting trolls on social media etc.

As far as I'm concerned at least some of those stories have been placed there for just that purpose.
 
Quick thoughts on Pacing. It strikes me that the phrase “Pace yourself” is very useful.

  • I have a friend who does 24 hour running races!! In her case “pacing” is about keeping below a speed that would cause her muscles to accumulate acids. She bases this on various things like running speed and heart rate. It struck me that this is not unlike what I do with my step-counter and HR monitor for ME. I can just imagine her coach saying “Pace yourself” to her as she sets off on the early laps. At that stage she would be well able to run faster, but just not able to sustain the effort for the required time period. Sound familiar?
  • “Pace yourself” makes it personal. I have over the years heard many instructions on how to pace, and many of those don’t suit me at all. Pacing in my experience is not a fixed technique. Rather it is personal to the individual and might fluctuate over time. For example here are some of the things I have been told that “Pacing” involves, and why they don’t always suit:
    • Rest must be with zero stimulation, so NO reading or stimulation of any kind. - For me this doesn’t work. My mind refuses to calm, and that is worse. Yet idly scrolling FaceBook looking at videos of kittens, or listening to a rambling story on an audiobook allows me to reach a place of calm where the rest I am taking becomes useful. Others may prefer different.
    • Rest must be scheduled. - Schedules are fine when in work, and you need to meet others at set times, but I find this doesn’t suit ME. Rest might need to be earlier, later, longer or shorter for any number of reasons. We have enough inflexibility imposed on us by ME itself, why add more? Of course a general pattern of taking rest is useful, but it does not need to be by the clock as some would suggest.
    • Pacing means breaking tasks up and stopping and starting the task. - This can help, I agree, but again it might be just as helpful to just take the task much more slowly from the start? I think each person needs to find their own best way.
    • You should do the same amount every day. - Sorry no-one operates like this! Sure a basic routine can help with understanding personal boundaries, but life is not consistent. Some days must contain more stuff than others, so why not try and do less in the days prior to such events? And why not plan a couple of quite days afterwards?
Anyway, not sure where I’m going with this really, except to say that “Pacing” means different things to different people, and that is how it should be. Pacing is about coping, and each of us should be allowed to take what we find useful in the advice offered and drop the rest.

Oh and in my view Pacing isn’t a tool towards recovery. It is primarily a means of coping with the energy restrictions imposed by ME. Pacing might however be useful to prevent further decline (if you are lucky, and other life events don’t interfere) and it might mean your body gets a bit of a break and so has a chance to heal. However pacing doesn’t guarantee anything. It is just a way of getting by, as best we can, that is all.
 
Agreed @Unable the dictionary definition of pacing yourself does hit the nail on the head we need to bring back yourself. ETA totally agree that the routine and structure stuff is dubious. It’s a fluctuating condition so trying to force people into a routine is putting square pegs in round holes. I’m a lot better when I’m at home and can go at my own pace no fixed routine . I can fit myself more to a normal routine when staying with other people for a few days but I have a big PEM when I get home.
 
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Amw66 said:
I know @Action for M.E. have had funding for a project in Scotland for mentoring- See ME which has similar aims, matching people with experience of ME to recently diagnosed.

I don' t know how well this project has gone, or indeed what it' s aims and defined outcomes were. It would be great on either a shit day, or day when something that has been achieved (the likes of which is not really understood by those outwith this ME world unfortunately) to be able to contact and share with someone who " gets it" ( no pun intended)
Perhaps @Action for M.E. could give us an update?

This kind of intervention, in the early stages, could make a huge difference.
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Thanks @Amw66 - our Mentor M.E. project launched in 2016, and will continue until 2021. It aims to grow a volunteer peer-mentoring network across Scotland, which empowers people living with M.E. and their carers to manage the condition in line with their individual circumstances.

You can read more about it, and watch a short film of some of the volunteers involved in the project, on our website.

Our team in Scotland - Theresa Burns and Avril McLean - are continuing to recruit mentors and mentees in all areas of Scotland, with a focus on Fife, Edinburgh, The Highlands, Dumfries and Galloway, and Glasgow. Please do get in touch if you're interested.

Clare Ogden
Head of Communications and Engagement
Action for M.E.
 
Action for M.E. said:
Thanks @Amw66 - our Mentor M.E. project launched in 2016, and will continue until 2021. It aims to grow a volunteer peer-mentoring network across Scotland, which empowers people living with M.E. and their carers to manage the condition in line with their individual circumstances.

You can read more about it, and watch a short film of some of the volunteers involved in the project, on our website.

Our team in Scotland - Theresa Burns and Avril McLean - are continuing to recruit mentors and mentees in all areas of Scotland, with a focus on Fife, Edinburgh, The Highlands, Dumfries and Galloway, and Glasgow. Please do get in touch if you're interested.

Clare Ogden
Head of Communications and Engagement
Action for M.E.
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Please read @Unable post earlier on this thread about pacing yourself
 
Expressed pejoratively, and with my tongue in my cheek, pacing is the act of doing nothing during the times when you could realistically be doing something worthwhile. Which I am finding myself utterly incapable of doing. When I have a good day I actually feel more useless, pointless and depressed than when fully sofa/bed bound.
 
NelliePledge said:
Thanks for flagging this @Hutan @phil_in_bristol i can confirm that this booklet along with AFME booklet about employment/guide for employers are what I based my approach to ME/CFS in the first 18 months from diagnosis rather than resting for several months/a year I went back to work on gradual phased return around 12 weeks from diagnosis. I believed that by doing gradual return i was helping myself to adapt to the illness I thought I could keep doing some work and do a bit more as I gradually improved. I had no idea that severe ME existed or that there are people who have had ME for decades and decades. When I eventually 24 months from diagnosis had found a private specialist and travelled to see him he said that continuing to push myself to keep working 15 hours a week was counter productive for my health and that I should take early retirement. In fact I have gradual onset ME and was unaware that was the case for at least 10 years before diagnosis. Keeping working was merely perpetuating the pushing through that had no doubt contributed significantly if not entirely for the gradually reduced functioning i experienced over those years.

AFME need to reconsider their publications as a whole and I would say they need people with a range of experiences of ME feeding in to that particularly need to listen to people who have not seen any improvement. People who have improved somewhat or considerably tend not unsurprisingly to be quite willing to share experiences. They aren’t representative of people with ME as a whole though. Also what is described as an improvement should be framed by explaining what level of functioning the person went from and now has. Often I believe people who have been severely or high moderately affected go to being mildly affected but see that as a recovery because they can do so much more than before. What isn’t given enough/any emphasis is that it’s not a one way street just because someone isn’t severely affected when diagnosed doesn’t mean they can’t become moderate or severe. This is a hard message to give but it must be done
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Even the MEAssociation website seems to me to have a very breezy approach to recovery, and a total lack of numbers. Far too much use of terms such as sone, few, and many.
 
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