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Pacing - definitions and sources of information

Discussion in 'Lifestyle Management' started by Hutan, Feb 9, 2019.

  1. Hutan

    Hutan Moderator Staff Member

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    This thread on pacing has been split from this thread:
    Consumer contested evidence: why the ME/CFS exercise dispute matters so much. Plos blog post by Hilda Bastian


    It is good, especially for someone from outside the usual ME advocacy circles. This definition of pacing bothered me though. I blame @Action for M.E. for it a lot more than Hilda Bastian.

    Pacing isn't a treatment that assures your condition stabilises or, much less, that recovery is achieved.
    Pacing doesn't involve 'very gradually increasing activities'. That sounds a lot more like 'graded exercise therapy' or the now more fashionable 'graded activity therapy'.
     
    Last edited: Feb 10, 2019
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  2. Snowdrop

    Snowdrop Senior Member (Voting Rights)

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    @Hutan

    Oh the joys of the robustly healthy telling the ill just how it's done.

    ETA: sp
     
    Last edited: Feb 9, 2019
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  3. Hutan

    Hutan Moderator Staff Member

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    Here's the link the Action for ME Pacing booklet quoted. It's badly in need of a revision. No doubt it's discussed elsewhere on the forum. @phil_in_bristol
    https://www.actionforme.org.uk/uploads/pdfs/pacing-for-people-with-me-booklet.pdf

    Looks like it was last reviewed in 2013.
    so much bad stuff to quote, here's a taste:


    And here's a tip especially for you @Snowdrop:
     
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  4. Mfairma

    Mfairma Established Member

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    Yeah, same reaction. It's having a car with mechanical troubles and driving it more gently and in a way that doesn't exacerbate the specific problem more than needed. Not a treatment at all, just coping.
     
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  5. strategist

    strategist Senior Member (Voting Rights)

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    Agreed. For a while though, the idea that pacing would lead to meaningful improvement was popular. Four or five years ago, when I joined PR, it was a common belief.
     
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  6. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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    When I was introduced to 'pacing' in these terms under a specialist ME/CFS service, I was was recording my activity levels. I did found initially that getting out of daily/weekly boom and bust cycles did allow a slight increase in my total activity levels which I could continue for a period, but longer term what was happening was just introducing a new boom and bust cycle on a longer time scale. Presumably this is how even conscientious clinicians may develop a sense that this works clinically. Though they are setting up their patients for a crash they are setting them up for a crash that will happen after their discrete block of therapy has happened.
     
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  7. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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    I think this mistaken belief arises if you look at short periods of time, a couple of months or so. I did find some years ago when introduced to this form of 'pacing' over a couple of months that I was able to increase my average daily total activity time. This was when I was varying between moderate and mild. I think for some by finding a stable base line you can release as it were some spare capacity.

    However, when I looked at a longer timescale, of months and years it became clear that pacing had no clear impact on the underlying condition, rather it relates to quality of life and trying to avoid avoiding deterioration. And that now some years on, having moved into varying between severe and moderate, it is unlikely that I could release enough spare capacity to create the illusion that I was recovering.

    I now strongly believe that this idea of 'pacing' promoting 'recovery', though it very much appeals to the clinician's psyche, fits in well with their 'raison d'être', it is in reality setting up the patient longer term to fail.
     
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  8. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    yes, and raised with AfME on numerous occasions over the last couple of years+
     
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  9. dangermouse

    dangermouse Senior Member (Voting Rights)

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    I was (when first diagnosed, 2007) taught a ''pacing'' technique that encouraged increasing activity by 10% - which I tried carefully with the aid of a stop watch. I was moderate then and for a period of time I did seem to have some improvements - but (big BUT) after doing it for over a year (or so) and having regular ups and downs (relapses) I plateaued for a short while before a significant relapse that I did not recover from.

    To me, this ''therapy'' was pretty similar to GET and it was with the ''goal'' of recovery, I was originally told that I'd recover (if I stuck to the ''pacing'' strictly) in around 18 months!

    So, all these years later I am housebound and significantly worse than I was before I tried the ''pacing'' that I was taught at the CFS clinic.

    I don't really know properly what pacing is now (I find it confusing because of having that ''pacing'' drummed into me) or how to do it - is there a good (easy to read) link anywhere to advice on pacing?
     
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  10. Sean

    Sean Senior Member (Voting Rights)

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    Worth highlighting.
     
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  11. strategist

    strategist Senior Member (Voting Rights)

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    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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  12. Esther12

    Esther12 Senior Member (Voting Rights)

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    I think 'pacing' is really difficult to define, partly because it has become a tool patients feel they need to use in order to avoid being pressured into GET. There is this view that if you are ill you have a responsibility to be doing some treatment to get better, even when there isn't good evidence that anything in particular is effective. Saying 'I find pacing a helpful way of managing my illness' can just be a way of saying 'leave me to live my own life without interference... I'm doing something that sounds vaguely medicalised!'.
     
  13. Andy

    Andy Committee Member

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    I don't have a link for you but, for me, pacing is just living as much as I possibly can underneath the hard 'cap' on my energy levels. How do I know where that cap is, I hear you ask - there is no trick to it, I have learnt my limits through painful experience, by trying to do something and finding that it was too much. Enough times doing that and I started to be aware of certain warning signs and I'm able to use those as a signal to moderate my levels of exertion, where possible, to avoid over exerting.

    Hope that helps, sorry it's not more guide-like. :)
     
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  14. NelliePledge

    NelliePledge Senior Member (Voting Rights)

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    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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  15. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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    I agree that this difficult issue needs to be broached quite early in the course of an individual's ME, and returned to later as it can be difficult for people to hear it and to take it in.

    It took me some twenty years years of this condition to truly take on board that any improvement is potentially reversible, that I could deteriorate as well as improve. Most doctors have been ambiguous in what they have said to me, leaving me with a false optimism. I repeatedly responded to improvement by doing more and more until I then suffered significant relapse.

    We need clearer cut long term information on prognosis, to understand that for some if not the majority of us any improvement can be reversed at an instant. For example I have twice ended up bedbound in half renovated houses in circumstances that could have been avoided if I had allowed for the possibility of relapse. Alternatively a friend with mild ME, after a holiday on a Greek island, felt she had made a significant improvement, so she left her job and released all her capital to create an extended holiday on the same island for nine months. It seemed to work and she returned to England believing herself fully recovered. She took on a full time locum job, but after a couple of weeks had a major relapse; largely bedbound she was never able to work again, but with no access to ill health retirement, no home and no savings.
     
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  16. dangermouse

    dangermouse Senior Member (Voting Rights)

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    That’s really helpful - yes, thanks :thumbup:
     
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  17. Michiel Tack

    Michiel Tack Senior Member (Voting Rights)

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    The main proponents of pacing are Ellen Goudsmit and Leonard Jason. They have written a consensus document together, sketching what pacing means and how it differs from GET. It's open access: https://www.researchgate.net/public...chronic_fatigue_syndrome_A_consensus_document

    There's also some basic information about pacing on MEpedia: https://me-pedia.org/wiki/Pacing
     
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  18. NelliePledge

    NelliePledge Senior Member (Voting Rights)

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    Well they are the main researchers. Isn’t it something that was generated by patients?
     
  19. Dolphin

    Dolphin Senior Member (Voting Rights)

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    They’re both also patients.
     
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  20. DokaGirl

    DokaGirl Senior Member (Voting Rights)

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    Very good article.

    I agree with all who said pacing does not lead to recovery, and pacing does not involve gradually increasing activity over time. Muddling it in with GET misinforms the reader.

    This is the public relations/glossy brochure approach to a devastating physical illness.
    As my husband said, it's the "Bugs Bunny" model of disability and illness. When the rock falls on Wiley Coyote in real life, he does not get up and run away!
     

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