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

I've been out of the work loop for long enough now to have lost touch with any tech beyond Word too.

Maybe a place to start would be with a survey of people's experiences. Part of the problem seems to be the definition of "pacing" itself, so devising the right questions is crucial:

- What do understand by the term "pacing"?
- Do you use it to manage your condition?
- How does it help you? Or have you tried it and it hasn't worked?
- Pros, cons?
- What is the most useful tip you would pass on to someone new to ME (either pwME or friend/relative)?

Though I guess this should all be directed back to the original forum thread: https://www.s4me.info/threads/pacing-definitions-and-sources-of-information.8098
Sorry if I'm simply repeating what has probably already been said over there.

 

They will always get it badly wrong, any of it, all of it, on any aspect of the ME/CFS subject, while ever they get input from the 'experts' - ie BPS taught therapists from any of the clinics... especially the ones geographically or otherwise closely linked with the key BPSers.

The fundamental problem as I see it is that they feel they have to have some 'professional' input because patients cant be trusted to do the teaching alone. The collective patient experience/advice simply isn't trustworthy unless it's vetted by a medic. In their world the medics simply must know something more or have a better understanding, by dint of being a therapist working at a so called specialist clinic. I don't think they have in any way grasped that the professionals in this area don't know what the **** they are talking about. They don't even understand the condition of which they speak. They illlustrate their lack of understanding very clearly here & in almost every other thing they say about ME, PwME etc etc. They truly believe that just because they see a lot of patients and give a lot of advice, and are involved in a lot of worthless & poor quality research into it then that must mean they know all about it, and qualify them as experts, but they don't. They may know a lot about CF, but ME/CFS? no.

I know you know all that @Trish I'm just saying....

That until our charities acknowledge that in the face of virtually no reliable scientific evidence into anything that shows cause or treatments that help, the people to listen to when the advice is conflicting, are the patients over & above the 'therapists', regardless of the therapist's so called credentials.

But it seems AfME are the ones who (whether theyre aware of it or not)have swallowed the idea the most deeply, that the patient testimony alone just cant be good enough, credible enough or trustworthy enough, simply because they are an ME sufferer & therefore their beliefs/ideas/behaviour are always going to be faulty or 'unhelpful' in some way, because that's what defines the condition. - You cant have ME unless your cognitions & behaviour are faulty/aberrant/unhelpful, so their input must always be vetted/regulated/validated/disinfected (cant think of the word I mean) by the 'experts'...
So they have to get 'specialist clinic' physiotherapist input.... but since most of them it seems don't know what they're on about.... I cant see AfME ever producing anything decent.

ETA Perhaps in time @PhysiosforME might be able to make a bit of headway, but they're up against an absolute juggernaut of fixed beliefs & ideology.

 

#MEAction just sent an email promoting that:

https://www.meaction.net/2020/01/23/charging-your-batteries/?mc_cid=d058865bf9&mc_eid=c1fdea04b1

(the youtube link does not seem to work).

 

Minor quibbles-

[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?

 

My daughters limits have not widened.

I wonder if this can occur when people who have been trying told to "push through" by themselves/friends/physios or whoever, are given permission to slow down, rest and NOT overdo it. Then, they MAY gradually improve a bit and do more.

Could this be why Charles Shepherd claims that people improve a bit? Just guessing really.

We were fortunate for 2 reasons when my daughter was diagnosed. Firstly a close friend of ours had ME, and so we knew that pushing through was wrong. Secondly the local Paediatrician recommending looking at the NICE GDL gor more info. The stuff I read there seemed totally incongruous and baseless and bore no relation to the illness she had developed.

So, we were able to negotiate the minefield of GOSH (Gt Ormond St), now at UCL. Others have not been so fortunate. https://www.meaction.net/2019/01/23...nd-positive-thinking-on-a-young-girl-with-me/

 

Indeed. My limits never widened over 20 years, I simply learned what those limits were and how to live within them.

 

No, my limits haven't widened. But I can see how it could feel like that. You spend less time with PEM when you can't do anything at all, and you feel better - or at least less bad - when you're not having PEM all the time. So that could easily be felt like an improved energy envelope even though your limits are exactly the same.

Of course a few people seem to luck out and naturally improve. Their energy envelope gets better - but that's nothing to do with pacing. Except maybe that if they hadn't been pacing they might have jeopardised their improvement by continuously putting too much strain on their body.

 

My first time round my energy envelope definitely did improve with time. I was initially as ill as I've been all this year, mainly housebound. I wasn't told about pacing but, after three months of trying to push through and ending up housebound I sort of happened across my owm version of it.
Over the next 2.5yrs I slowly improved, was working fulltime etc. At my best I was almost normal except I couldn't run or cycle like I used to. Any exertion like that, or even too much gardening, would cause pem for a week or so. I was still not well.

With this relapse pacing is, at best, allowing me to stabilise and have some consistency. My symptoms are still a bit variable. There are perhaps some signs of improvement compared to 6mths ago. But I still have days where just 'being' puts me outside my energy envelope.

I completely accept that first time round I had a less severe situation but without pacing I'd not have gotten back to work. My only regret is going back fulltime and not part time as perhaps I'd have avoided this relapse.

 

Hello - here to share a message from Sonya Chowdhury, our Chief Executive, as follows:

I wanted to contact forum members regarding the Action for M.E. pacing booklet, having read all your comments over the past few days. I have also gone back to the booklet to review it in light of these comments. While I do not agree with all the views shared – we all have different views and opinions at times – there are some very good challenges and suggestions that we need to take on board.

My colleagues worked with people with M.E., reflecting a range of severity and symptoms, and some carers of those with more severe M.E., in the hope of producing a comprehensive resource that can be used as a how-to guide but also for more detailed reference. I appreciate that, at times, this may not work.

We take on board your feedback too and the team will now make some amendments in light of this. I currently have one colleague (we are recruiting) who is doing all of our communications work, including being responsible for all our online and printed content. Making changes will take time and I appreciate your patience given there are some other important pieces of work that she is working on too. We aim to have a revision by the end of next week, and we will continue to review your feedback here. Thank you

 

That's positive and welcome. Thank you.

 

Thank you @Action for M.E.

 

How many times @Action for M.E.

Its the same line over and over again. "We are sorry we got xyz wrong we will ammend xyz".... "we have taken your comments on board".

Yet again we hear it will take time to make the necessary amendments on errors of judgement that should NEVER have happened in the first place.

Over and over again.

Sick of hearing it, this simply doesn't happen with other ME charities. Isn't it just time you realised that your organisation isn't equipped to deal with the very basics and just folded.

Its now way beyond forgivable the amount of times your organisation has thrown us under a bus.

Its just not tenable to continue getting everything so badly wrong and then apologising and claiming you will put things right when the damage is often already done.

If your organisation is not equipped to do the job just stop doing it!!

 

Thanks for the response @Action for M.E.. It is appreciated.

A suggestion - perhaps asking the opinion of patients and carers here before publication on the wording and meaning prior to publishing might be more constructive?

As you know, we will tell you honestly what we think and there are a lot of us from the milder end of the spectrum through tk the severe plus carers.

Also many if us have already been through the clinic stage of the illness and can give you depth of experience of what happens to us later.

 

Hello. We are still working on the pacing booklet, amid much other work, partly due to us relying on an external designer to make edits. I wanted to keep you in the loop with this and let you know that we hope to have this done as soon as possible. I will post here again when we've done this.

Many thanks @Invisible Woman for this suggestion. Our Patient and Carer Reference Group is involved in reviewing and giving feedback on our publications, and we would welcome input from S4ME users too. I’d be happy to post here when we have an ETA for further revised drafts (on a resource by resource basis), and invite users to share their thoughts.

Best wishes
Clare
Action for M.E.

 

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?