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GET/GAT being misrepresented as 'pacing'?

Discussion in 'General ME/CFS News' started by JemPD, May 13, 2019.

  1. JemPD

    JemPD Senior Member (Voting Rights)

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    There is a post today on MEA facebook -

    https://www.facebook.com/pg/meassociation/posts/?ref=page_internal

    one of the personal quotes accompanied by pics, that they've been running recently - for awareness week i think?
    There is a photo of the lady on her stair lift with the accompanying text

    "Need a shower but too exhauseted. Payback after exertion from my pacing routine"

    No criticism of the sufferer or her post - or the MEA.... I applaud anyone who's willing to take a photo of themselves looking less than great & share it - all power & thanks to that lady.

    However the comment concerned me a bit. I might be misconstruing, but i've been concerned for a while that the concept of 'pacing' may have been, in effect, stolen & misused by the BPSers/the NHS clinics. - Where they've started to call GET 'Pacing', presumably because it cons new patients into thinking they're being given something other patients have reported helpful. Not long ago I heard someone describing what was clearly GET as Pacing, & expressing anger that pacing had been recommended when people with ME deteriorate after exercise. I assumed she was just a bit foggy in her writing, but here it is again...?

    The suggestion that someone's 'pacing routine' would exhaust them & give them payback - the whole point of pacing is to not get to the point of payback - how can you have payback from pacing?

    I'm struggling today so this may be a 'post & run' but i wanted to post it. I hope i'm wrong but if some health professionals are starting to do this it's disturbing, & certainly wants pointing out to NICE i would have thought.

    I didnt like to ask the lady on the fb page directly as it can so easily be taken as criticism of her in some way & this is quite the reverse.
     
  2. Andy

    Andy Committee Member (& Outreach when energy allows)

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    I think we've seen/heard many examples like this. The reverse also happens - I know of at least one NHS clinic that calls their approach GET but they initially establish a baseline of activity where patients don't "suffer setbacks" and then they are encouraged to increase their activity slowly but to avoid doing too much so that, again they don't "suffer a setback". So effectively they are actually pacing, but calling it something completely different.
     
  3. NelliePledge

    NelliePledge Moderator Staff Member

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    its a mess isnt it
     
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  4. Trish

    Trish Moderator Staff Member

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    I've experienced so called pacing which sounds like what you are describing, but to me that's an insidious version of GET. The AfME pacing booklet, if I remember correctly, takes a similar 'active pacing' approach. The problem is, we don't know until we've pushed too far and hit PEM that it was too much. So what I was advised was effectively to stay right at the edge of my envelope all the time and keeping on pushing at the boundaries, which inevitably leads to more PEM.

    I suspect OT's and other therapists are so steeped in the 'rehabilitation' model in their training that they can't bear to say to people 'do less', or 'stay well within your envelope' except as a temporary phase to 'stabilise' in preparation for doing more.

    When I broke a bone in my shoulder I had physio in which I was taken gradually over several weeks through stages of passive movement, active movement and movement against resistance, at each stage pushing right to the edge of what I could bear pain wise, and taught exercises to do at home. It worked well - I didn't lose any of the range of movement of my shoulder.

    The trouble is, in ME, that approach is deeply counterproductive.
     
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  5. Andy

    Andy Committee Member (& Outreach when energy allows)

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    Yes, but in learning how to pace ourselves who hasn't done too much? And after we recover from that bout of PEM, who doesn't, from our baseline, try to do a little bit more every time we don't have PEM?

    We obviously don't have access to an energy meter that allows us to clearly see when we are about to do too much, so I would view a therapist who follows the procedure I describe, finds the point which is too much and is happy to leave their patient functioning underneath that point, having helped them find their sustainable exertion limit, is teaching them to pace, and is helping them do what we have all learnt to do.

    If however, the sustainable exertion limit of their patient is found and the therapist insists on repeatedly pushing their patient past that point - that then is GET as it assumes that a patients exertion limit can be increased through fitness.

    All in my own opinion of course.
     
  6. Trish

    Trish Moderator Staff Member

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    I think we are in agreement, @Andy. My problem is that I've never come across a therapist who can resist encouraging you to keep pushing at the envelope.
     
  7. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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    That was my experience of pacing as presented by an OT at a specialist ME/CFS service. She presented ME as a management strategy, but also included the idea that achieving a stable average activity level would over time allow increasing that average.

    It does seem that pacing, GET, etc in practice are enormously variable, some focusing on the GET stage of establishing a stable base line and others using pacing as encouraging increasing activity levels.

    It does not seem uncommon for people on web forums to report doing a burst of GET to get themselves back on track. I suspect though they may be using an arbitrary exercise regime, it enables them to cut out other things in their life and may in fact provide a structured way of doing less.
     
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  8. NelliePledge

    NelliePledge Moderator Staff Member

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    Ah the dreaded AFME “pacing” booklet they have been silent on letting us know their plans for it @Trish if it was on paper I’d use it to light my log burner and start again.
     
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  9. Sean

    Sean Senior Member (Voting Rights)

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    I don't think there is any doubt that the BPS crowd have deliberately obfuscated the distinction between GET and pacing, and tried to morph GET into pacing (and maybe vice-versa too), while still calling it GET.

    All to avoid having to admit that GET was a disaster to start with, and patients were right all along about pacing.
     
  10. NelliePledge

    NelliePledge Moderator Staff Member

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    I reckon it’s vice versa they’ve developed GET-lite and started calling it pacing to con patients into thinking they’re not doing GET. It would only be relatively hard line practitioners who would stick with calling it GET. Whereas the pragmatists would play it both ways by toning down the content but professionally still being able to describe it as GET so they’re compliant with ?NICE guidelines and what they’ve been commissioned to deliver by the CCGs in their area. Meanwhile adoption of pacing or management programme as the public description wraps it up for patients in sheep’s clothing. I went through one of these programmes in 2016. It didn’t make me worse cos i reduced other activities ie my part time work to compensate - and was elastic in my reporting back about the extent of activity I’d actually undertaken.
     
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  11. chrisb

    chrisb Senior Member (Voting Rights)

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    And Afme was in at the beginning of that and bears at least partial responsibility. Does anyone kow the unadorned history of those days?
     
  12. Barry

    Barry Senior Member (Voting Rights)

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    I can't fully agree with that. My wife (who is the one with ME, mild/moderate) does pace herself extremely well, and seems to have an intuitive grasp of balancing costs versus benefits. But she does push herself into PEM not uncommonly, though normally manages to keep the severity of it tolerable. For my wife it is always a balancing act between living some semblance of the life she used to have, versus messing herself up so much she ends up with none of it. It's a dynamic balancing act: do nothing and she has no life; do too much and she has no life - somewhere in between she manages to alternate between doing some of the stuff she enjoys, and paying for it but not too catastrophically. It's not a steady state, but alternating between the highs and lows, hence why I say dynamic balance.

    For my wife her clever trick seems to be she mostly keeps the lows from going too low, and in doing so manages some degree of highs, though always far less than she longs for. This is my wife's form of pacing, which she has adapted to for well over a decade, but of course the lows do sometimes dip really low, either because she got a bit carried away, or because she has deliberately accepted the impending consequences for something she very especially wanted to try and do. So in my wife's case, she could very well say similar to what the MEA poster said, though the word 'routine' might not be quite right ... but we can't all be linguistically perfect.
     
  13. Andy

    Andy Committee Member (& Outreach when energy allows)

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    So from what you have written you would agree that it's the times a pacing regime is broken, either accidentally or deliberately, which would cause a setback. This would be my experience as well, which means that I would still consider the poster on Facebook to be confused in either what they believe pacing to be, or in how they describe their experience.
     
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  14. JemPD

    JemPD Senior Member (Voting Rights)

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    Yes i hear what you are saying @Barry, thats pretty much my approach to pacing too although i swing between mod end of severe & sever. So i approach pacing as a thing to do which helps me manage things & hopefully prevent overall deterioration including prioritising energy spend on those things which are important, without allowing the routine to be so rigid that i can never push it a bit - this may not be wise & does knock me over into some PEM but i try to limit how deeply, & of course i make mistakes too & unexpected things happen. so i wasnt meaning that if one uses pacing one never has PEM, but that the pacing itself shouldnt cause it, which is what is implied in the post. Because pacing is the method to reduce, limit or prevent it - thats the purpose, not cause it. So if i mess up or dont follow my medication regime I might have increased pain, but i wouldnt say i'm in pain 'from' my drug regime...

    This

    I did say in the OP that i wasnt criticising her or her post, just worried about the fact that some people recently seem to have been given the advice that 'pacing' is a routine of increasing activity in a structured way, and thats a corruption (imho) from the original concept as set forth by (eg Goudsmit et al) & early patients. It may be just that she didn't quite word it as i would have done, which is of course FINE, no issue, it's hard enough to do these advocacy things, i'm not criticising, just concerned for people possibly being told unhealthy things
     
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  15. NelliePledge

    NelliePledge Moderator Staff Member

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    People ARE being told unhealthy things under the title pacing or managing CFS. it’s the content in the manual that matters not the title of the programme. GET-lite rebranded is still GET whatever the practitioners say to participants
     
  16. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Agreed.
    The key problem is that all 'advice' re 'treatment' is termed as 'rehabilitation', ie getting back to 'normal functioning', whereas it should be classified as 'management'. True pacing is about managing the illness as best as possible, not as a means to achieve 'recovery'.

    But that would mean accepting that the illness is chronic and potentially life-long, something most physicians do not like and certainly don't want to tell patients.
     
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  17. Barry

    Barry Senior Member (Voting Rights)

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    To be honest Andy, as I assemble my comment here ... I'm confused to.

    Imagine a graph, time along the horizontal x-axis and "ability to do stuff" up the vertical y-axis. (The y-axis labelled that way because it might be physical, cognitive, whatever, and ultimately it's all about being able to do things). For my wife, when she is pacing herself well, the line would be a moderate oscillation, the highs when she is able to do some of the things she once would have done without thinking; the lows when she is paying for the high, but not really badly ... but enough that she has to either stop or slow right down. The time period is surprisingly tricky for me to pin down, but probably one or two oscillations a day, with an overall downward trend through each day. For my wife it is never a flat line, she is always driven to strive for what highs she can, whilst managing how low the lows have to go. It's a dynamic balancing act, and my wife seems to be very good at it. I rarely intervene, other than to occasionally have a gentle nag at her to sit down and rest, but she is very independent :).

    Sometimes the oscillations are bigger, higher highs with inevitable lower lows. Sometimes because my wife desperately wanted to do something and so just did it, knowing and being prepared to accept the deeper low she knows will follow. Up to a point I - and I think she - still thinks of this as part of her broader pacing strategy. You couldn't possibly say that 'pacing' is such-and-such an oscillation, and any slight variation from it is not, there is working band within which it would all count as pacing, though I could not put numbers on it.

    But there will come a point where the oscillation amplitudes get bigger, and is probably outside what you might call 'pacing', and so might be deemed to have pushed the pacing too far (i.e. not pacing). In these sort of scenarios the oscillatory waveform would also show an overall downward trend over days rather than a single day, and always signifies the need to back off. I've tried to consider what might signify that point, and this is just a finger in the air guess. When my wife is in one of the troughs on the graph, but if part of normal pacing, she will be sitting down in her 'recovery mode', feeling pretty bad, and no choice but to just rest. But if in a deeper trough, she will be sitting down, but now feeling and looking very ill, very flu like, and as is her way when dealing with such things, very quiet. And if she is lucky she will sleep, unless she feels too ill to do so. I think this really ill mode signifies when her pacing has been blown away, along with the other sign which is the ongoing downward trend. But that is the point where we all know it has to stop. It's fairly rare.

    Note my wife does not think of her symptoms in this graph-like way, it's just my way of trying to get across what I observe.

    I appreciate that more severe pwME won't get the 'luxury' of this sort of strategy. I deliberately don't call it a regime, because to me it does not seem that regimented. One of my wife's great strengths as I see it, is how she adapts her pacing quite dynamically.

    I think what I'm ultimately saying is that just like so much else with ME, there is no one-size-fits-all when it comes to pacing. Different strokes for different folks.
     
    Last edited: May 15, 2019
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  18. Wonko

    Wonko Senior Member (Voting Rights)

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    At times I have to break things down into small, maybe a couple fo tens of seconds, chunks in order to get things done. Resting between some or all chunks.

    Sometimes just trying to break up a task into these chunks is too big a chunk and consequently nothing actually happens.

    Sometimes the chunks are bigger, or big enough to encompass a whole task, if the task is small enough and naturally chunked, such as doing washing (find washing if it's not already in the machine, turn on machine, wait, either hang it up or put it way when it's finished - 1 job, 2-3 chunks with rests in between), cooking can often be done in a similar function. Not up to hoovering, acquire hoover, rest, plug it in, rest, hoover a bit, rest. Sometimes the hoovering can be done in 1 chunk, most often not.

    It's all pacing, although sometimes it may not appear to be so, if my chunk size at that time is large enough.

    The main exceptions are outside stuff, where chunks tend to be much, much, larger, and resting between them, in a useful way, for as long as is needed, is socially unacceptable. These are typically the things that I muck up most on. I can't just stop on the way to the shops and get my head down for as long as needed, until I'm recovered enough to continue, which strictly speaking can take a few hours on a good day. Pause, maybe sit down for 10 minutes, if I'm lucky, is the best I can do. At times, benches permitting, I bench hop, lurch between benches and then rest at each one. And these are typically quite good days, days when I feel well enough to go out, not just to go out but to walk further than the absolute minimum needed to achieve my goal..

    This causes problems ;)

    As I do feel I should go out, considerably more than I do, but outside, pacing just isn't possible, not in a way that's needed anyway, so trips out will cause PEM to some degree, and often crashes.

    I do, from time to time, feel that this is worth it, at other times, such as apparently the last weeks, I don't.

    You makes your choices, you pays the piper - it's just life.
     
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  19. Simbindi

    Simbindi Senior Member (Voting Rights)

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    When my daughter plugs in the hoover my cats run away. When I plug in the hoover they just sit still and look at me - knowing the probability of me actually using it is very remote...
     
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  20. Mithriel

    Mithriel Senior Member (Voting Rights)

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    When I could still do chores I mentally divided them. Things like ironing and cleaning the top of the kitchen cupboards, not needed. Hoovering could be done very occasionally as it was the same effort no matter how long it had been left. Doing the washing and other things which were harder if left were the priority.
     
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