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

dave30th said:
I'm a bit confused about why so much guidance is needed for 'pacing' anyway. I'm not a patient so I can't judge from personal experience. But isn't it a matter of two or three general sentences of advice, and then let people find their own way? I mean, it's a self-help mechanism, it's not a therapy and there's not a protocol or a "right" way to do it. Am I missing something? Two pages seems appropriate. But why would you need dozens and dozens of pages to be taught how to do pacing?
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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.
 
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dave30th said:
I'm a bit confused about why so much guidance is needed for 'pacing' anyway. I'm not a patient so I can't judge from personal experience. But isn't it a matter of two or three general sentences of advice, and then let people find their own way? I mean, it's a self-help mechanism, it's not a therapy and there's not a protocol or a "right" way to do it. Am I missing something? Two pages seems appropriate. But why would you need dozens and dozens of pages to be taught how to do pacing?
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Job creation and vested interest, BACME style
 
dave30th said:
I'm a bit confused about why so much guidance is needed for 'pacing' anyway. I'm not a patient so I can't judge from personal experience. But isn't it a matter of two or three general sentences of advice, and then let people find their own way? I mean, it's a self-help mechanism, it's not a therapy and there's not a protocol or a "right" way to do it. Am I missing something? Two pages seems appropriate. But why would you need dozens and dozens of pages to be taught how to do pacing?
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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.
 
dave30th said:
I'm a bit confused about why so much guidance is needed for 'pacing' anyway. I'm not a patient so I can't judge from personal experience. But isn't it a matter of two or three general sentences of advice, and then let people find their own way? I mean, it's a self-help mechanism, it's not a therapy and there's not a protocol or a "right" way to do it. Am I missing something? Two pages seems appropriate. But why would you need dozens and dozens of pages to be taught how to do pacing?
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This
Basic theory and signposting to other resources/ info
 
dave30th said:
I'm a bit confused about why so much guidance is needed for 'pacing' anyway. I'm not a patient so I can't judge from personal experience. But isn't it a matter of two or three general sentences of advice, and then let people find their own way? I mean, it's a self-help mechanism, it's not a therapy and there's not a protocol or a "right" way to do it. Am I missing something? Two pages seems appropriate. But why would you need dozens and dozens of pages to be taught how to do pacing?
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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.
 
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?
 
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.
 
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:
Trish said:
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.
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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.
 
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.
 
Invisible Woman said:
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.
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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.

Wonko said:
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.
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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.
 
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.
 
NelliePledge said:
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.
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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")
“In practice, the term pacing is used in different ways. One understanding of its
meaning is as adaptive pacing therapy, facilitated by healthcare professionals
(see p 11). Another understanding is that pacing is a self-management strategy,
without intervention from a healthcare professional.”
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Pacing is one part of the package that can help to manage your M.E. It’s
important that you and your doctor take other measures to treat and prevent
symptoms. Your doctor can prescribe medication and suggest other strategies
for managing pain, sleep difficulties and mood problems, for example.
Some NHS services offer people with M.E./CFS a treatment package that draws
on the key elements of pacing, cognitive behavioural therapy (CBT) and graded
exercise therapy (GET) or graded activity, although the clinicians may not use
these terms. They may use a phrase like ‘fatigue management’ instead
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A focus on recovery
Pacing is not a cure for M.E. but by balancing activity and rest in a measured
way you are supporting the body’s natural recovery process, stepping up your
rate of recovery. Many people find that they begin to improve once they accept
their illness, understand how it works, and follow a realistic and achievable
approach to getting better.
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A form of pacing known as adaptive pacing therapy was one of four therapies
– together with cognitive behaviour therapy (CBT), graded exercise therapy
(GET) and standardised medical care – studied by the PACE trial
(www.pacetrial.org) in 2011.
•
Adaptive pacing therapy (APT) is a version of pacing that has been found to
be helpful in chronic pain disorders. It is usually administered by an
occupational therapist.
•
CBT is a form of psychotherapy, often administered by a psychologist, which
may offer help in finding new ways of coping with the illness.
•
GET, which is usually administered by a physiotherapist, is about gradually
increasing physical activity from a sustainable baseline level.
•
Standardised specialist medical care (SSMC) is a standardised version of the
treatment to which M.E. patients are referred by their GPs in those areas of
the UK where specialists are available to offer advice and medicine and to
refer patients on for supplementary therapies such as CBT, GET and pacing
therapy
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Action for M.E.’s policy in promoting pacing is that:
•
pacing has been consistently rated as helpful and safe by the thousands of
people with M.E. who have participated in our surveys
•
adaptive pacing as defined and applied in the PACE trial has now been
proven to be safe for all and effective for at least one in three people
•
pacing in one form or another remains one of the key approaches used by
therapists in specialist NHS M.E./CFS clinics*
•
pacing is a valuable self-management technique that is free and accessible
to all, including the considerable number of people who do not have access
to a specialist NHS clinic.
*A limited form of pacing (setting baseline) is the starting point for graded
exercise therapy.
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https://www.actionforme.org.uk/uploads/pdfs/pacing-for-people-with-me-booklet.pdf
 
dave30th said:
I'm a bit confused about why so much guidance is needed for 'pacing' anyway. ...
But isn't it a matter of two or three general sentences of advice, and then let people find their own way?
Click to expand...
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)
 
[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!
 
NelliePledge said:
Yes and no unevidenced waffle about how sleep ‘hygiene’ helps. Getting some sleep helps if insomnia is a problem - beyond that everything is individual.
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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
 
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