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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. Dolphin

    Dolphin Senior Member (Voting Rights)

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    I haven't looked at the update myself yet
    https://www.actionforme.org.uk/resources/our-publications/booklets/
    https://www.actionforme.org.uk/uploads/pdfs/pacing-for-people-with-ME-Jan-2020.pdf
     
    Last edited by a moderator: Jan 24, 2020
  2. NelliePledge

    NelliePledge Moderator Staff Member

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    Mmm there are some changes in emphasis but it very much refrains from any explicit criticism of the NHS approach.

    I don’t have the energy or inclination to highlight detailed criticism at this point.

    I feel it is weak on heart rate monitoring basically leaving it to the NHS guy to say it isn’t that helpful and bizarrely saying you should seek help from a specialist when it’s known that the NHS doesn’t offer any help with heart rate monitoring.

    Sleep stuff is usual hygiene waffle.

    “Pacing up” aka GET is danced around. Increase by maximum of 10%. There is too much use of walking as an example activity which could be perceived as thinking walking is a good idea.
    The section about pacing at work doesn’t give any depth about how trying to keep working can be counterproductive and how many/few people with ME are able to keep working.

    lts got more caveats than the old version but it isn’t a major overhaul.

    no mention of Workwell

    My grumpy reaction is 4/10 you can do better than this AFME
     
  3. Trish

    Trish Moderator Staff Member

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    I haven't read it yet. I'll try to soon, if I can face it. Two initial impressions - the picture of three individuals on the front page suggest it's for people with mild ME - why no pictures of people resting or in bed?

    Second impression - it's very long. I can't imagine why it takes 64 pages to explain pacing.
     
  4. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Again, too many 'some'. Doesn't clearly indicate that the majority of sufferers remain ill/housebound/unable to work.

    lot of 'boom and bust' references throughout

    very wishy-washy; also throughout they say to consult ME specialists, yet these are usually the people who prescribe CBT/GET.
    ie
    BACME
    "Our Service offers a multidisciplinary approach, in line with the NICE guidelines. We regularly monitor newly published research into CFS/ME, but at present there are a limited number of evidence-based treatments for CFS/ME. A recent guide to therapies has been produced by the British Association for CFS/ME find out more www.bacme.info "

    if only

    but then it says
    the daily planner is just ridiculous
    see page 36

    big chunk about pacing at work.

    there's that 'some' again.

    This should be on page one, not just for patients but all health professionals 'treating' ME patients.

    Then it goes on to
    straight out of PACE manual(?)

    overall I think it is way too complicated, very contradictory in parts, and still strongly smacks of the 'fear/avoidance' , boom-and-bust model.
     
  5. obeat

    obeat Senior Member (Voting Rights)

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    Big UGH for the SMART advice.
     
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  6. MEMarge

    MEMarge Senior Member (Voting Rights)

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    It sounds about as dreadful as I feared ....
    Yet they wonder why people are wary of them as a charity.

    I do wish they would stop the "boom and bust" mantra.
    I don't know anyone with ME who can "boom"
     
    InfiniteRubix, sea, JaneL and 15 others like this.
  7. Trish

    Trish Moderator Staff Member

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    Far too much about planning ahead. As far as I'm concerned, planning ahead is setting myself up to fail.

    And the rejection of heart rate monitoring and no mention of step monitoring is lazy. Why not investigate it properly instead of rejecting it out of hand? They seem convinced that diary keeping and forward planning is better than listening to your body, assisted by a mix of past experience, how you feel right now, and feedback from heart and step monitors.

    I know of no evidence to support this assumption. It looks to me to be too heavily influenced by the experience of the physio who works in an ME clinic and is used to their standard diary based methods that they've been teaching patients for years, and feedback from patients who like that method (or pretend to).

    And far too much about 'pacing up' which they insist is not the same as GET, and which they present as a patient choice (implying in at least one place that those who don't 'choose' to pace up are not trying hard enough). The SMART thing on page 49 I find repellant - a mix of management speak and oversimplistic blandness. It doesn't feel like it has anything to do with real life.

    I haven't the energy to read the whole think in detail. It is an improvement to see emphasis on only increasing activity if it's sustainable, ie staying in the energy envelope even when 'pacing up'.

    My general impression is that they have made a huge mountain out of what could be explained in a couple of pages, while not actually offering the full range of strategies people find helpful, such as step and heart rate monitoring.

    As far as 'pacing up' is concerned, all that really needs to be said is that some individuals may find that their ME improves a little over time, and their energy envelope expands a little, and advice to be careful not to push up activity too fast when this happens.
     
  8. MEMarge

    MEMarge Senior Member (Voting Rights)

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    Last edited: Jan 24, 2020
  9. JemPD

    JemPD Senior Member (Voting Rights)

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    It Is management speak... I was taught it in management training 25yrs ago. Since achieveable and realistic are the same thing... it's just another example of the love of idiotic acronyms
     
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  10. rvallee

    rvallee Senior Member (Voting Rights)

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    This is disappointing. Others have already produced better advice, what is even the point of this? NHS advice is horrendous, say it, criticize the crap out of incompetent people. They are and have been misguided for decades. Say it.
     
    Hutan, InfiniteRubix, sea and 4 others like this.
  11. Sean

    Sean Senior Member (Voting Rights)

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    64 pages.

    Nuff sed.
     
  12. MEMarge

    MEMarge Senior Member (Voting Rights)

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    The MEAction survey shows results for the individual clinics.

    The Bristol Service for adults had one of the largest responses (alongside Sheffield).

    https://y9ukb3xpraw1vtswp2e7ia6u-wp...-ME-services-Survey-report-by-MEAction-UK.pdf Page 51

    Responses show: ONE person got much better, 12 were slightly better
    27 were neither better nor worse
    11 were slightly worse and 23 were VERY MUCH WORSE
    after attending the clinic!!!
     
  13. MEMarge

    MEMarge Senior Member (Voting Rights)

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    It is also Psych speak for those with depression, low motivation...
     
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  14. NelliePledge

    NelliePledge Moderator Staff Member

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    The previous version was written by someone not sure if the same person from NHS clinic. It seems rather than do something based on patient experience they’ve dabbled with the existing material and had it reviewed by some patients.
    I think they’ve missed an opportunity to meet the need for a succinct guide to pacing by people with ME in favour of not offending previous partners.
    The manual I got from the CFS clinic is shorter than this and covers the same ground much of the content is similar.
    Content on the lines of @Keela Too s blogs would have been a much better starting point than the old booklet.
     
    Last edited: Jan 24, 2020
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  15. ringding

    ringding Senior Member (Voting Rights)

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    It's Pete Gladwell, not Philip (for what it's worth).
    I'll have a read through over the weekend. I'm particularly interested as I've had sessions with Pete at the Cossham clinic (won't say too much as I don't want to 'out' myself). He made positive noises when I talked about using the HR monitor to help with pacing, so will read that bit with interest.
     
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  16. shak8

    shak8 Senior Member (Voting Rights)

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    Pacing pacing pacing...up and down the living room and hall. That is what I used to do when I ran out of pain meds.

    I think that too much list making is a sign of anxiety.

    Don't most with ME develop, over the course of their illness, a form of pacing that works for them, empiric. Why do experts believe that front-loading a new patient with this concept is going to usefu?
     
    Last edited: Jan 24, 2020
  17. MEMarge

    MEMarge Senior Member (Voting Rights)

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    Thanks, yes I meant Pete, have changed above
     
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  18. Hutan

    Hutan Moderator Staff Member

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    There are some good bits, but then, with 64 pages to fill, it's almost inevitable that some of it will be.

    Adding this to the list of problematic bits:

    How do they know that reducing sleep length increases 'sleep quality' in people with ME? How do they know that a person with ME sleeping for 14 hours doesn't need that amount of sleep for their body to do all that a healthy body can do in 8 hours? Producing the chemicals the body needs for the day ahead is work, just as much as unloading the dishwasher is. To me it's not surprising that sometimes or all of the time a person with ME takes longer to achieve that than a healthy person would.

    The month when my son slept for 20 hours a day coincided with a growth spurt. He still needs at least 12 hours.

    This is from the first webpage about sleep that came up in google:
    But according to the Pacing manual advice, those healthy teenagers sleeping for an average of over 9 hours should be cutting back in order to increase sleep quality

    And this - Don't worry if you feel worse when reducing your sleep! Push through! It wlll probably all be better in the end!
    Where have we heard that before?
     
  19. Louie41

    Louie41 Senior Member (Voting Rights)

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    I was struck by their imagined roster of daily activities. I wouldn't be able to do one day's activities in a week!
     
  20. Wonko

    Wonko Senior Member (Voting Rights)

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    I agree - and the way they are doing things (in that roster) is inefficient, no one with any experience would even do a lot of those things, let alone so inefficiently.

    They seem to think that 15 minutes sitting is a 'rest' - maybe for someone who doesn't have ME, but for a pwME 15 minutes is not a 'rest', it's an activity in itself.

    I mean who spends 30 minutes cooking, just tea, every day? In 30 minutes of activity I can cook the bulk of 10 days food (2 meals a day), so it only needs to be defrosted and nuked to make a meal.
     

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