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'Pacing for people with M.E.' Action for ME booklet - revised and updated January 2020.

Discussion in 'Monitoring and pacing' started by Dolphin, Jan 23, 2020.

  1. Trish

    Trish Moderator Staff Member

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    Couldn't agree more.

    A page describing general principles - energy envelopes, the aim to avoid PEM, rapid fatiguability and slow recovery, listening to your body, pacing all physical, cognitive and social activity, the need for plenty of rest and sleep, ...

    A second page listing hints and tips of things people find helpful - symptom and activity diaries, heart and step monitors, learning to say no, stopping before you reach your limit, learning from experience, not sticking to plans if your body tells you not to, not being hard on yourself when you push too hard and crash, not listening to people who advise you to exercise...

    With maybe an appendix with more detail of ways to use diaries and how to use step and heart monitoring.
     
    Last edited: Feb 7, 2020
  2. NelliePledge

    NelliePledge Moderator Staff Member

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    Yes and no unevidenced waffle about how sleep ‘hygiene’ helps. Getting some sleep helps if insomnia is a problem - beyond that everything is individual.
     
  3. InfiniteRubix

    InfiniteRubix Senior Member (Voting Rights)

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    Job creation and vested interest, BACME style
     
  4. NelliePledge

    NelliePledge Moderator Staff Member

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    Yes because the person who originally put this booklet together was from a CFS clinic and consciously or unconsciously used the CFS clinic manual as the basis for this booklet. Having the charity’s document and the CFS clinic on the same lines would have reinforced the strength of the messages at the time it was originally published. Obviously since then it has been tweaked and the BPSness toned down but the skeleton is still there. We’ve said it already on the thread Emerge’s leaflet is the model AFME should be taking.
     
  5. Amw66

    Amw66 Senior Member (Voting Rights)

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    This
    Basic theory and signposting to other resources/ info
     
  6. Ravn

    Ravn Senior Member (Voting Rights)

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    Actually, I do think there is a place for extensive guidance, for two reasons (would need to be of better quality that this booklet though...):

    One, because the limitations ME places on us are just too surreal for the newly diagnosed to truly comprehend. I certainly didn't get it. Yes, I started pacing as soon as I learned about it and thought I was doing all the right things. Which I did - but unwittingly not nearly strictly enough. It would never have occurred to me that something like taking a shower or talking on the phone for 5 minutes could be a problem. It had to be specifically pointed out to me. Nor was I able to believe that excessive PEM could lead to permanent deterioration even though I'd seen a sentence to that effect somewhere. I needed a much stronger warning than that.

    While in the end learning to pace inevitably involves individual trial and error, I think - hope - the number of serious errors could be reduced if people got really good, early, and extensive information. The 2-page Emerge info sheet is excellent as an introduction to pacing but I don't think it's enough on its own.

    Two, there's so much confusing, misleading and plain wrong information on the Internet that newly-diagnosed patients will stumble across that there's a need for something to counter it.

    That's something I only realised after spending the last few months writing up some notes I'd made some time ago after conversations with an ME veteran who was helping me get my head around pacing. Turns out a large chunk of my notes aren't instructions at all but myth-busting, i.e. about stuff I'd read on the Internet, found confusing and run past my mentor who explained what was nonsense and why. I found that immensely valuable at the time and still return to it occasionally.

    The scary bit is that despite this early and extensive mentoring I still didn't appreciate just how low my limits were and that exceeding them too much would lead to deterioration. Maybe I'm particularly thick in that respect, or maybe it's impossible to truly understand until you've made yourself more ill. Maybe we can't save others from going down that same road - but it's worth trying.

    To that end I've given my tidied-up notes to ME Awareness NZ to see if any parts of them could be of wider use.
     
    TiredSam, Squeezy, Chezboo and 19 others like this.
  7. Trish

    Trish Moderator Staff Member

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    Lots of good points, @Ravn.
    I certainly have gone on getting it wrong for decades. And the mistakes are all about doing too much, not too little. I'm not sure whether it requires a lot of pages to point out the pitfalls.
    That's where I've found, for physical activity, step and heart rate monitoring has made a big difference for me. I can lie to myself that it's OK to do a bit more, but my Fitbit doesn't lie.

    I think the point a lot of us are making is that a lot of the pages in the AfME book are unhelpful.

    As someone said, the advice to do only 60 percent of your limit is far more helpful than 'pacing up'. Our problem is doing too much, not needing to be encouraged to try to do a bit more.

    @Ravn, would you be willing to share your notes with us?
     
    Chezboo, ahimsa, Frankie and 11 others like this.
  8. Snowdrop

    Snowdrop Senior Member (Voting Rights)

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    I think at some point however unfortunate, we all must learn some things by our experience.

    I find this illness surreal. There are still days I have moments where I think -- this can't be happening.

    IMO good detailed guidance will still need independent validation by the person experiencing it.
     
    ladycatlover, shak8, Chezboo and 12 others like this.
  9. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    I think @Ravn makes good points. It took many, many years before I took it seriously enough.

    Getting the idea in my head that just because I felt able to do something and really wanted to get that thing done, didn't necessarily mean it was okay to do it.

    There is an element of but surely a 5 minute phone call? Especially, when everyone around you is encouraging you to do more.

    On the other hand there is so much to get your head around....you cannot literally write a complete guide that will manage to get it perfectly right for everyone.

    Perhaps 2 documents side by side. Companion guides. Common ME myths and misunderstandings & Pacing. When you request one, you automatically get the other?

    However, as @Trish states, the more you cover, the more you need to address the pitfalls:
    While I recognise many find the HR monitor a useful tool I have made myself much worse by using one. Nothing wrong with the monitor, but because changes needed in dose of thyroid meds, fluctuations in hormone levels, plus occasional anaemia can alter HR. Very easy to interpret the information incorrectly.

    So if you were to include information on using HR devices or any other pacing aid you would need to point out where evidence is anecdotal (we haven't had trials with HR monitors that I know of), plus we would need to clearly document at least the common co morbidities that confound the information a HR monitor provides.

    Whatever is in the document, it's focus should be on safety and protection of the patient's health rather then making it seem okay to find ways to do a bit more.
     
    ladycatlover, Squeezy, JaneL and 10 others like this.
  10. Wonko

    Wonko Senior Member (Voting Rights)

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    For me the point of a HR monitor isn't to tell me that I'm doing okay.

    It's to tell me that I've overdone it before PEM hits, to give me warning so I stop, as soon as is practical, and prevent me making things worse.

    Just going off my HR is under a certain value so I must be okay to do x,y, and zee, doesn't work for me.

    Just as significant a warning, for me, is when my HR is in the 30's.
     
    ladycatlover, shak8, JaneL and 5 others like this.
  11. Snowdrop

    Snowdrop Senior Member (Voting Rights)

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    I like the idea of a myths busting pamphlet.

    I don't know if there are any legal concerns to consider.
     
    ladycatlover, JaneL, MEMarge and 4 others like this.
  12. Trish

    Trish Moderator Staff Member

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    I agree it's not right for everyone, and should only be offered as a strategy some people find helpful in managing pacing, not as evidence based medicine.

    I think that's important - don't use it to give you permission to do more if your body tells you to stop but your HR seems OK. I use it to remind me to stop before I realise I've started heading into overdoing it territory.

    And it's uncovered some surprises for me - like sitting on a chair and taking off jumper and tshirt and putting on clean ones can take my HR up by 20 or more - and I haven't walked a step. I now know to rest lying down after getting dressed instead of telling myself getting dressed can't possibly be too much activity for me, and pushing on to do the next thing. It's given me the permission I wasn't giving myself to take more breaks and get more help with things like showering.
    Doesn't help with my frequent cognitive over exertion though.
     
  13. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    Perhaps rather than try to encompass that kind of detailed information re HR monitoring in an information guide the guide could provide links the person could explore when they're interested or ready to take on the new information?

    It seems to me that links to old style static documents may be of limited use in that the advice doesn't suit everyone or becomes outdated. Documents should also let readers know about responsibly run sites (like this) where patients can discuss their experiences and highlight good points and drawbacks that might not otherwise be considered.
     
    ladycatlover, Squeezy, JaneL and 5 others like this.
  14. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    I found the 2013 version (not sure if it's the same one as was being amended after AfMEs 'epiphany').


    (Note this is from the old version but still "
    We are particularly grateful to Peter Gladwell,
    Clinical Specialist Physiotherapist, Frenchay Hospital,
    for his guidance on updating this booklet")
    https://www.actionforme.org.uk/uploads/pdfs/pacing-for-people-with-me-booklet.pdf
     
  15. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    Oh no it hasn't.....
     
  16. InfiniteRubix

    InfiniteRubix Senior Member (Voting Rights)

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    I detect some legal liability risk there...

    That is demonstrably dangerous and baseless b*******.
     
    ladycatlover, chrisb, Squeezy and 6 others like this.
  17. Ravn

    Ravn Senior Member (Voting Rights)

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    Thought I'd wait for the first round of feedback from the folks at ME Awareness NZ before deciding where to take it. Could take a while; I exhorted them to carefully pace themselves wading through the lengthy document. The irony that you need to pace to read about pacing... :D
     
    ladycatlover, shak8, RoseE and 7 others like this.
  18. ahimsa

    ahimsa Senior Member (Voting Rights)

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    I think it's because most people without ME, and even some patients with ME, think one of the main problems is that ME patients are either not trying hard enough (have no motivation) -OR- are quitting far too quickly when they feel even a few tiny symptoms.

    Sad to say that many folks don't seem to trust ME patients.

    Edited to add: It's also important to counter the natural tendency to do too much and the disbelief that small actions could really cause a crash (as @Ravn points out in post #86 above)
     
  19. TheBassist

    TheBassist Senior Member (Voting Rights)

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    [Bolding mine]

    1 Really disliking the use of the word mental there. My preferred word is cognitive but maybe that's a personal hang up?

    2 do most people find their limits slowly widen? Or is it just when people initially learn to pace themselves? Does anyone else find that there's a limit no matter what you do?[/QUOTE]
    My limits have shrunk, no doubt. I look at things I used to take for granted even three months ago and can’t imagine how I did them.
    You know, the more I hear from the charities, and I mean all of them, and the NHS, the more I just feel like we’re just being patronised. I often wish the NHS would just openly admit their ignorance; only when you understand where you actually are can you form a proper plan. In the meantime I’ll be happy if they just leave me alone. Pardon the rant!
     
  20. TheBassist

    TheBassist Senior Member (Voting Rights)

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    Re: sleep I think the only advice they should be giving is to sleep exactly as much as your body will take. The body won’t sleep if it doesn’t need it. Never yet heard of someone sleeping themselves to death. Now the opposite, that is true
     
    Wits_End, ladycatlover, Ravn and 11 others like this.

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