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

Dolphin

Dolphin

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I haven't looked at the update myself yet
https://www.actionforme.org.uk/resources/our-publications/booklets/
Pacing for people with M.E.
Fully revised and updated for 2020, Pacing for people with M.E. is based on the expertise and experience of people with M.E. and Pete Gladwell, Clinical Specialist Physiotherapist, Bristol NHS M.E./CFS Service, plus data from our 2019 Big Survey. It explains pacing as part of self-management, with a step-by-step pacing guide including daily and weekly planning, pacing versus real life, explaining M.E. and pacing to others, and managing stumbling blocks.

What is M.E.? / Living with M.E. / Health & care professionals / Employers & teachers
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https://www.actionforme.org.uk/uploads/pdfs/pacing-for-people-with-ME-Jan-2020.pdf
 
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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
 
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.
 
The experiences shared with us by patients and
professionals tell us that some people recover (the rate is higher for young
people) and that others improve over time. However, some remain very ill, often
bedbound and/or housebound for many years.
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Again, too many 'some'. Doesn't clearly indicate that the majority of sufferers remain ill/housebound/unable to work.

Other clinicians consider pacing a way to first stabilise then gradually build up
increases in activity, sometimes called “pacing up” – see p 45.
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Stability versus “boom and bust”
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lot of 'boom and bust' references throughout

Specialist M.E. services
Depending on where you live, your GP may be able to refer you to an NHS
service in your area. Some NHS services offer people with M.E. a specialist
service that builds on the key elements of pacing and other approaches, such as
cognitive behaviour therapy (CBT), graded exercise therapy (GET – see p 45), and
managing diet and nutrition.
NB. A significant number of patients, scientists and charities, including Action for
M.E., do not support the NICE guideline’s current view that CBT and GET “are
the interventions for which there is the clearest research evidence of benefit” for
people with mild to moderate M.E., given legitimate questions being raised
about safety and effectiveness.
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very wishy-washy; also throughout they say to consult ME specialists, yet these are usually the people who prescribe CBT/GET.
ie
the specialist M.E. Service at North Bristol NHS Trust
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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 "

A sample weekly planner
is shown on p 38. It has a column for each day of the
week, broken down into morning, afternoon and evening. You can use a diary like
this to plan the main activities for the week, and make sure that none of the days
are overloaded. It’s also helpful to look for gaps in the week when you might want
to add in new activities gradually
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if only

but then it says
The unexpected
Life is unpredictable, so however thoroughly you plan you can still be caught out
by the unexpected. So it’s important not to work right up to the margins of what
you can sustain – leave a bit of a cushion so that you can deal with things that
come out of the blue. If you are caught out, you will need to compensate by
removing some activity from your plan.
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the daily planner is just ridiculous
see page 36

big chunk about pacing at work.

Exploring increases:“pacing up”

We know that some clinicians consider pacing to be about carefully managing
activity and other stressors to avoid post-exertional malaise. Others would
consider it a way to first stabilise then gradually build up increases in activity,
sometimes called pacing up.
For example, a 2019 survey of more than 90 NHS professionals working in pain/
fatigue management (not necessarily specialist M.E. services) found that 87%
considered “gradually increasing activities” to be part of pacing.
1
These gradual increases, or “pacing up” following the establishment of a
sustainable baseline, might incorrectly be referred to as graded exercise therapy
(GET). GET is built on a deconditioning model but pacing up is pragmatic; it
doesn’t depend on a theory. Pacing up can apply to all sorts of activities, not just
physical, so it’s not correct to call it GET.
Pacing up, or not, is your choice. The information set out in this section is not
necessarily a recommendation. Instead, we aim to support you to make an
informed decision.
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Some people find they are not able to increase their activity, no matter how
carefully they try
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there's that 'some' again.

Gradual increase
If you decide to extend an activity, do this by up to 10% and no more. For
example, if you can currently manage walking for 10 minutes, try increasing it to
11 minutes. Increasing from five to 10 minutes would not be advisable as this is a
100% increase!
Be sure to wait a good period of time to be certain that the activity increase
hasn’t caused a worsening of your symptoms. Over time, repeat this process so
that your activity periods are gradually lengthened and your rest periods
shortened.
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Goal setting
Because everyone’s manageable level of activity is different, it’s essential that any
health professional who may be supporting you to set goals understands M.E.,
and that many people with M.E. are not able to work towards agreed goals,
however carefully and gradually they try.
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This should be on page one, not just for patients but all health professionals 'treating' ME patients.

Then it goes on to
Action planning
Action planning is a frequently used tool in the self-management toolkit. It helps
to focus your efforts, and could help you develop plans with greater odds of
success. Action planning involves five elements, which add up to a SMART action
plan, that you can set out on paper.
•
S for specific
– be clear about your aim, such as reading a specific book
•
M is for measurable
– how much will you aim to read before you stop?
•
A is for achievable
– rate your confidence about managing this from zero to
10. If its below seven, it might be worth rethinking your action plan: can you
make it easier in some way, or aim to do less of the activity?
•
R is for rewarding
– this should be something that you’ll be pleased to have
achieved. It’s easy to end up doing things that you feel you “should” or
“ought” to do: make sure that it is important to you.
•
T is for time factor
: when do you aim to carry out your action plan? Morning,
afternoon or evening? Once a week, twice a week, or every day? You can link
this with your planning (see p 33).
It’s important to recognise that not every action plan is successful. However, it can
still be an important part of learning more about your self-management: if the
action plan didn’t work, why not? Can anything be done about the reason that it
didn’t work? You might need to look at managing stumbling blocks on p 53.
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If you think you may be heading for a setback, take some time to review why this
is happening. It’s often sensible to drop back to a lower level of activity while you
recover, before building up again.

That said, some people learn that it’s not a good idea to cut activity out altogether because too much rest and too little activity can make the setback worse, rather than improve matters.
Pete Gladwell, Clinical Specialist Physiotherapist, Bristol NHS M.E./CFS Service,
says: “We don’t know why this is the case – it’s clear it’s not deconditioning – but
it is regularly reported by patients in our clinic. It seems to increase lethargy, brain
fog, pain and stiffness, and risks low mood. Reduced exposure to natural daylight
and contact with nature can also have a negative impact.”
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Why do I often feel worse when I increase my activities?
If you decide to increase your activities – gradually, and only if you feel you are
able to (see p 45) – you may find that you experience a small increase in your
symptoms, such as fatigue or muscle stiffness. This is a common experience and
your body may well adjust to the new level of activity in a few days.
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It’s normal to feel some muscle weakness and/or stiffness after a setback or
relapse. Whatever the cause of your relapse – and sometimes there may be no
obvious cause – aim for a gradual, careful return to your previous activity.
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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.
 
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.
 
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.
 
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!!!
 
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.
 
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MEMarge said:
Philip Gladwell was the physio involved in the dreadful pre PACE Hazel O'Dowd trial
https://www.s4me.info/threads/a-tri...tion-article-november-2019.12494/#post-220439

https://www.ncbi.nlm.nih.gov/pubmed/17014748
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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.
 
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?
 
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ringding said:
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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Thanks, yes I meant Pete, have changed above
 
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:

AfME said:
If you sleep for much more than eight hours, it might be worth trying to reduce your sleep, so that your sleep quality can increase. You will need to do this gradually, to allow your body to adjust.
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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:
sleep foundation.org said:
To get the most out of our sleep, both quantity and quality are important. Teens need at least 8 hours—and on average 9¼ hours—a night of uninterrupted sleep to leave their bodies and minds rejuvenated for the next day. If sleep is cut short, the body doesn’t have time to complete all of the phases needed for muscle repair, memory consolidation and release of hormones regulating growth and appetite. Then we wake up less prepared to concentrate, make decisions, or engage fully in school and social activities.
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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

AfME said:
During the initial phases of any sleep reduction program people often feel more tired, but this usually improves over time. As with increasing physical activity, changes to your sleep patterns should be made gradually.
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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?
 
Louie41 said:
I was struck by their imagined roster of daily activities. I wouldn't be able to do one day's activities in a week!
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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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