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

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.

 

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.

 

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.

 

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.

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.

 

Is this the case? Where is that data about that particular clinic? How much has Gladwell worked with Professor Crawley--anyone know?

 

There was an MEAction survey last year, which can be filtered to see the results from Bristol here:
https://www.meaction.net/2019/12/05/how-did-your-local-me-service-perform/
Click on the link to the dynamic dashboard to access it. Works best from a laptop.

I'm not aware of an AforME survey, would be interested in the results if there is one.

 

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.

 

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.

 

Rewrite it?

 

Compost it and start again from scratch.

 

My bad. Got mixed up following the thread. It was the #MEAction survey and I was wrong. Will correct above.

 

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?

 

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!