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

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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Err.....no. Is it just me? I start to feel better when coming out of a relapse or PEM. In a relapse or PEM my body doesn't want to stretch or move and I will feel extremely ill if I try to push it. Full on hangover + raging flu etc.

When I start to come out of a relapse the symptoms ease and I want to move, maybe stretch a little, maybe a tiny walk in my garden.

The feeling a little better comes first. If you don't wait for that you will be in a world of pain.
 
I wonder if part of the issue with AfME et al is they just see/get input from the much milder & possibly more likely to be misdiagnosed "fatigue" end of the spectrum and the more recently diagnosed.

The much milder or misdiagnosed won't experience the level of disability and symptom burden as quickly, if at all and so give a false picture.

I'm a relative ME newbie and haven't quite hit the quarter of a century of being ill yet & I'm still learning about ME from other patients. I'll read someone else's post and suddenly realise there is a correlation between events I hadn't previously connected. The recently diagnosed wouldn't have a hope of joining all the dots.

It's typical of AfME.....it's like they've heard of the condition but have failed to understand it.
 
I tried to take on some of this advice last night whilst making spaghetti bolognese.

I got as far as putting the spaghetti in the pan then went for a rest and changed my activity to watching tv.

So hard spaghetti no sauce was the outcome.

10 mins of writing it all up in a diary made we yearn for a cup of tea.

The teabag is in the cup tomorrow I will boil the kettle.
 
So what can we do about this resource, given that there is some advice that can harm people with ME, and AfME, as the largest UK charity, is influential?

I'm not sure if any representative of AfME now checks the forum.

Could we ask Sonya Chowdhury to read this thread?
 
I started writing a long post but then I realised I needn't waste my energy because everyone else has articulated it all so well. I agree with every word on this thread so far.

Snow Leopard said:
The real difficulty with pacing is balancing activity levels with meeting your human needs. It's very well and good to say stop, no more, or that you must to some set "baseline" each day but this isn't reality.
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Precisely.
 
Fucking heck (am I allowed to say that on this forum?)

So they're now renaming GET / graded activity as "pacing up"

And telling people that "pacing up" is not GET

Because they know that the patient community says that GET is bad and pacing is good

Fucking heck.

You can't just change the meanings of words to suit your purposes. Well you can try to, but you shouldn't, it's disgusting.
 
Snow Leopard said:
This should be an eye opener for some. They're equating PEM with the 'bust' in boom and bust. This is total nonsense of course and shows how little they have listened to patients describing their experiences.

Does anyone relate to the following?


Because the above description has never described my experience.

What is notable is that ALL studies that have objectively measured activity levels show that patients most patients actually have more consistent activity levels with lower intensity peaks compared to healthy sedentary controls, suggesting that "boom-bust" is not a perpetuating factor for a large majority of patients.



Nope.


The idea that GET is built on a deconditioning model is a myth promoted by people who don't understand exercise physiology. Doing the same or a little bit more of a low intensity activity does nothing to reverse deconditioning. Doing somewhat intense activity for a short period of time then doing less intense activity for a few days, before doing intense activity again (slowly increasing that intensity over time) is how you reverse deconditioning.

GET is a type of cognitive-behavioural therapy that targets behaviour, rather than cognitions and tries to break behavioural patterns such as avoiding activity due to fear or kinesiophobia, break hypothetical boom-bust cycles and challenge (through behavioural activation) the cognitive expectations of experiencing symptoms after performing a particular activity. Whether those hypothetical behavioural patterns are common in CFS patients has never been demonstrated using objective evidence (e.g. actigraphy).
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All of this. There's far too much unpredictability, especially the demands of outside life, to plan anything anyway. And a software developer who did a lot of project management, it's basically natural for me to plan things, even in a complex process, and this simply isn't possible here.

Especially the deconditioning. We know the PACE researchers don't even believe this and don't care to contradict themselves so it's disappointing that this pretends otherwise.
 
Sarah94 said:
So they're now renaming GET / graded activity as "pacing up"
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Yep. We really need to start on a glossary or something so new patients or those who can't keep up with the slippery terminology can look these things up.

I think they would argue it's not GET because the activity isn't necessarily something that could be considered exercise. However it's certainly equates to GAT (Graded Activity Therapy) in my eyes.

Anyone who actually knows anything about ME will know that pushing, regardless whether it's to walk for an extra minute or carry out a task that wouldn't normally be considered exercise, is still pushing.

It's the pushing that's the problem. AfME still don't seem to get that or they just want to ignore it. Dunno which but the end result is the same. More vulnerable people put at risk of harm.
 
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NelliePledge said:
I’m thinking of giving this a go. Not rewrite. A different product. If people want the NHS clinic manual they can get that from them.
a short piece a lot less dense. Short sections. Maybe some actual people with MEs summary of what a day or a week looks like for them.
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Well I'm happy to help put something together, if you want me to. It seems like it might be useful to do so, given the amount of (potential mis-)info out there.

I'm sure I've asked before, but are there any useful guides already available? Or does it need to be so personalised that that's why there are so few good sources?
 
Lucibee said:
Well I'm happy to help put something together, if you want me to. It seems like it might be useful to do so, given the amount of (potential mis-)info out there.

I'm sure I've asked before, but are there any useful guides already available? Or does it need to be so personalised that that's why there are so few good sources?
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Good point. I think I did look at what ME Association have on pacing but I can’t remember how useful it is.

I do think there’s a lot more of a personal aspect to it than the mechanistic planning your day out hour by hour on paper or an app gives the impression of.

I will take you up on offer to help @Lucibee im not the best at collaborative document technology I’m rather stuck at Word level. I think there’s a way of setting up a group on the forum to collaborate as well.

Subject to checking whether that ME Association stuff does or doesn’t cover what I have in mind my thought is to do a rough outline with headings and sketch in content to start with. It will take me probably til the end of February or longer.
 
Lucibee said:
I'm sure I've asked before, but are there any useful guides already available? Or does it need to be so personalised that that's why there are so few good sources?
Click to expand...
Emerge have a good info sheet on Pacing. Introductory only, but only 2 pages long and not a single mention of "Pacing up" or GET-lite in any disguise.

Can be downloaded from here: https://www.emerge.org.au/treatment-and-management

Direct link: https://www.emerge.org.au/Handlers/Download.ashx?IDMF=2a2287ee-b84d-428f-b72e-00da812ddd7c

Once you get beyond that basic level it does get very difficult to write because we are all so different. I have a dim memory somebody in Norway wrote a whole book on it!
 
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