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

I went through the last version of this[ie Jan 2020]
see post https://www.s4me.info/threads/pacin...d-and-updated-january-2020.13320/#post-232178

and from what I have looked at in the 'new revised version' [Feb 2020] of the previous allegedly revised version it's only been tweaked a bit; the format, length and substance of it haven't really changed.

It's late for me so I'll just jot down a couple of things.

The point of 'pacing' is basically to try and balance your activity and rest to try and prevent yourself going into PEM.

So I woudl start with a brief explanation of PEM.

The broken battery analogy re what energy you have or dont have, plus you don't know how much energy there is to start with or how much is left at any given time.

so you need to try and work that out, basically trial and error.

Forget the 'boom and bust' cycle rubbish, if anything the 'push, crash' scenario is more apt.
ie if you push through and ignore the warning signs you get PEM.........maybe not immediately but it will happen.

If you keep getting PEM you're doing too much.

Doing things that result in you spending several days completely out of action and very ill is not the best way to pace no matter how much you want to do them. This is possibly one of the hardest things to learn particularly at the beginning.

time to go
 
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I tried to carry on looking at the pacing section. Way to seriously overcomplicate. This rule, that rule, the other rule....

At no point is there any appreciation of the fact the the same task can take different amounts of energy at a different time of day or on different days.

At no point (in the pacing bit) did I see any acknowledge that ME is a fluctuating illness.

Nor did I see anything about the additional load environmental factors might have on our resources - heat, amount of light, noise..... All of these can have a huge impact.

This is just busy work for the sake of it, in my opinion. In some ways I can understand a mild - moderate, newly diagnosed person clinging to this and even giving them feedback because rules, baselines, diaries with coloured pens might make you feel more in charge while actually achieving naff all.

I doubt I'll read any more to be honest. It's not worth the effort.
 
Despite nearly 30 years of studies on sleep dysfunction in ME/CFS, Castro-Marrero et al. conclude that "Very little is known about the nature and cause of sleep dysfunction in CFS/ME." https://onlinelibrary.wiley.com/doi/full/10.1111/jsr.12703

Yet others, like Lloyd et al in Australia, are quite happy to assume it might be treated with simple relaxation techniques. Their trial was registered in 2016, but has yet to report. Wonder why...

However, Staines and Marsall-Gradisnik hypothesise that sleep dysfunction maybe due to poor brainstem connectivity: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6835065/

It would be useful to know where exactly this notion, that correcting sleep patterns can help improve symptoms, comes from. Is it just a hypothesis, or has anyone actually reported some hard evidence?
 
Lucibee said:
Despite nearly 30 years of studies on sleep dysfunction in ME/CFS, Castro-Marrero et al. conclude that "Very little is known about the nature and cause of sleep dysfunction in CFS/ME."
Click to expand...

Based on my own experience of a sleep study (not ME specific), frankly I am not at all surprised.

I arrived at the centre and told I had to be all connected up and in bed at a certain time - significantly earlier than my usual bedtime. A good hour earlier than that the lady who was to connect me up rushed up to me and told me she'd been looking for me as I needed to go to bed now. Hadn't anyone told me she needed to leave early? No.

So I was rushed into bed ridiculously early. As many of you already know, going to bed too early means you're less likely to fall asleep. Heyho.

Finally, I nod off. The nurse has to visually check every patient, every hour. The sound of her opening the door and walking into the room woke me up. Every time. Then it would take a minimum of half an hour before I could go back to sleep.

5am the kitchens started up. My window overlooked the same courtyard as the kitchens. It sounded like a saucepan fight.

Eventually I was freed only to discover one of the yokes hadn't been connected correctly. Wait around to find a unit to take home, but it had to be back the following day so IM had to drive a good hour out of his way on his way to work. Very grumpy.

So that night I connect myself up. My dog was mesmerized. For the first few hours, every time I closed my eyes, I could feel him sneak up, examine me carefully then gently start to tug at the wires.

Result? Inconclusive.
 
Lucibee said:
Despite nearly 30 years of studies on sleep dysfunction in ME/CFS, Castro-Marrero et al. conclude that "Very little is known about the nature and cause of sleep dysfunction in CFS/ME." https://onlinelibrary.wiley.com/doi/full/10.1111/jsr.12703

Yet others, like Lloyd et al in Australia, are quite happy to assume it might be treated with simple relaxation techniques. Their trial was registered in 2016, but has yet to report. Wonder why...

However, Staines and Marsall-Gradisnik hypothesise that sleep dysfunction maybe due to poor brainstem connectivity: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6835065/

It would be useful to know where exactly this notion, that correcting sleep patterns can help improve symptoms, comes from. Is it just a hypothesis, or has anyone actually reported some hard evidence?
Click to expand...
It’s just the pig headed notion that we’re just tired.
 
another one that needs changing (written in 2015)
Published the year after the SGPS, a large-scale randomised controlled trial
(known as the PACE trial11) showed that, when combined with specialist medical
care, some people with mild/moderate* ME-CFS had, at 52 weeks, moderately
improved after taking part in graded exercise therapy (GET) or CBT.
*People with ME-CFS who were house or bedbound, ie. the more severely
affected, did not take part in this trial.
However, several large surveys of ME-CFS patients by Action for M.E. and other
ME-CFS organisations show that many patients reported that GET and, to a
lesser extent CBT, caused them harm. Clearly there’s a discrepancy here which
could be caused in part by the physical therapies referred to in previous surveys
not being so clearly defined or professionally provided. It is also possible that
therapies such as GET are only suitable for a specific sub-group of patients.
Feedback from patients includes being told to undertake activities that are
inappropriate given their condition such as joining a gym or pushing
themselves beyond their physical capabilities too hard or too soon.
Therapies for people with ME-CFS should only be applied by appropriately trained
professionals who have experience in dealing with the illness.
12
Click to expand...
https://www.actionforme.org.uk/uploads/managing-me-a-guide-for-gps-in-scotland.pdf
 
It seems AfME have adopted the #MEAction Stop,Rest, Pace message and linking to their booklet on pacing:

Stop, rest, pace

We counsel individual patients, medical providers and people operating at all political levels associated with health to advise patients to stop, rest and pace. Patient organisations working in M.E./CFS will often have tools or services to assist with this. We encourage medical professionals and Long Covid patients to contact M.E./CFS organisations in their own country to share appropriate resources and assistance available.

Better outcomes by far are found from advising patients not to push and, as with M.E./CFS, not to focus on exercise. Patient health and quality of life is maximised by advocating for and advising that they rest, manage their activities and that their symptoms are treated appropriately.
Click to expand...

https://www.actionforme.org.uk/rese...ing-for-change/international-advocacy-for-me/
 
I see we get a mention in the latest version available on AfMEs website
We are enormously grateful to Pete Gladwell, Clinical Specialist Physiotherapist, Bristol NHS M.E./CFS Service, for the considerable time, energy and experience devoted to helping write this booklet, and, for their invaluable and detailed feedback: • our Patient and Carer Reference Group • our Trustees, Alison Deeth, Sue Hardy and Phil Murray • Action for M.E. supporter Glen Buchanan • Action for M.E. Medical Advisors, Dr Gregor Purdie and Prof Julia Newton • people with M.E. quoted in this booklet who shared their pacing experience online and for our Big Survey
• views shared on the discussion thread about this booklet on the Science4ME discussion forum
Click to expand...

“Pacing has been life-changing for me. It was first suggested to me, a few months after my diagnosis, by an M.E specialist. It was extremely difficult at first, as it felt so strict! Only half an hour of ‘red’ time a day (aka high energy), which included brushing my hair, and watching TV. It was shocking how much high energy I had been using without realising. Pacing has stopped me from having those extreme boom and bust days.”

A physiotherapist’s view Pete Gladwell, Clinical Specialist Physiotherapist, says: “Pacing is about balancing physical and mental activities with rest. Effective pacing can provide more stability, control and sustainable levels of activity. This can also offer, if you choose, a firm foundation for ‘pacing up’ (see p 43), which involves a considered plan to try and nudge up the level of an activity or exercise. “Those who do not improve in terms of function may still find pacing and baseline setting to be helpful strategies to: • improve control over a challenging illness • reduce the frequency and severity of setbacks • provide some ability to plan and problem-solve around limited capacity • communicate clearly to other people what you can usually manage.”
Click to expand...


Pacing A5 booklet Oct 2023 aw.indd (actionforme.org.uk)
 
Sly Saint said:
I see we get a mention in the latest version available on AfMEs website





Pacing A5 booklet Oct 2023 aw.indd (actionforme.org.uk)
Click to expand...
I don’t think ‘if you choose’ [to increase your activity/pace-up] is the right phrase and is at best insensitive to the many who aren’t lucky enough to not be deteriorating.

which feels like it must be a tiny number to me because I can’t imagine those who are mild get decent adjustments from all those round them to give a genuine chance to not be out in PEM and beyond that into moderate you’d need a heck of support luck with neighbours and employment/financial situation and the luck to not need many medical or dental appointments

and then - he has no evidence it works if they do actually 'pace-up'?! I get that some charities justify it on the basis that it's better to encourage those who insist on trying to have someone reining them in, I just don't think this is written to send across that message. And given the situation that most pwme are in it is therefore misleading others on whom care and support will be dependent that it is that type of condition.

And that misinformation is a problem, and is entirely avoidable - a 'choice' made when writing not to underline that fact. Particularly when the writer runs a clinic where not all attendees have PEM and mightn't be basing this only on those with PEM/ME/CFS when suggesting it in a document that is to those who have ME/CFS.

In fact I'm not sure whether it works for 'fatigue' or 'chronic fatigue' or 'cancer fatigue' as I doubt their methods if they've done any genuine research there are any less terrible than they were for CFS. But even if it was helpful there is a case for a bit of insight into struggling to understand the differentiation and whether the case for someone being funded to do 'both' works, given they are opposite skillsets. This old school 'just offer what you offer' without it being technical to the condition at all really is old hat and not on, and isn't forgiven just by tweaking documents a bit with a 'if you choose' inserted.

It's like treating diabetes within a centre of something very general and the only medical advice passed onto the medical GPs, support and employers then being allowed to be 'if they choose to increase their sugar' because you've a big non-diabetic cohort and haven't told the difference. That surely seals the case for these HCP-led by this sort of tosh not being 'specialist' either clinics or guidance at all. Just 'what physios offer' and we change the sales pitch to cover our arse? so it should not be allowed to charade as such either in weight nor giving them funding instead of getting in different HCPs who do want to learn about the condition and do research into what the outcome of different things is by using sensible methods

Is this intended at all to apply to those more severe? I think they need to start making these things clear and having those who know about and protect the severe writing statements for each of these. Otherwise the omission allows presumption on a full the gap basis which means they get even worse treatment often
 
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