Pacing - definitions and sources of information

@Hutan

Oh the joys of the robustly healthy telling the ill just how it's done.

ETA: sp

 

Yeah, same reaction. It's having a car with mechanical troubles and driving it more gently and in a way that doesn't exacerbate the specific problem more than needed. Not a treatment at all, just coping.

 

Agreed. For a while though, the idea that pacing would lead to meaningful improvement was popular. Four or five years ago, when I joined PR, it was a common belief.

 

When I was introduced to 'pacing' in these terms under a specialist ME/CFS service, I was was recording my activity levels. I did found initially that getting out of daily/weekly boom and bust cycles did allow a slight increase in my total activity levels which I could continue for a period, but longer term what was happening was just introducing a new boom and bust cycle on a longer time scale. Presumably this is how even conscientious clinicians may develop a sense that this works clinically. Though they are setting up their patients for a crash they are setting them up for a crash that will happen after their discrete block of therapy has happened.

 

I think this mistaken belief arises if you look at short periods of time, a couple of months or so. I did find some years ago when introduced to this form of 'pacing' over a couple of months that I was able to increase my average daily total activity time. This was when I was varying between moderate and mild. I think for some by finding a stable base line you can release as it were some spare capacity.

However, when I looked at a longer timescale, of months and years it became clear that pacing had no clear impact on the underlying condition, rather it relates to quality of life and trying to avoid avoiding deterioration. And that now some years on, having moved into varying between severe and moderate, it is unlikely that I could release enough spare capacity to create the illusion that I was recovering.

I now strongly believe that this idea of 'pacing' promoting 'recovery', though it very much appeals to the clinician's psyche, fits in well with their 'raison d'être', it is in reality setting up the patient longer term to fail.

 

yes, and raised with AfME on numerous occasions over the last couple of years+

 

I was (when first diagnosed, 2007) taught a ''pacing'' technique that encouraged increasing activity by 10% - which I tried carefully with the aid of a stop watch. I was moderate then and for a period of time I did seem to have some improvements - but (big BUT) after doing it for over a year (or so) and having regular ups and downs (relapses) I plateaued for a short while before a significant relapse that I did not recover from.

To me, this ''therapy'' was pretty similar to GET and it was with the ''goal'' of recovery, I was originally told that I'd recover (if I stuck to the ''pacing'' strictly) in around 18 months!

So, all these years later I am housebound and significantly worse than I was before I tried the ''pacing'' that I was taught at the CFS clinic.

I don't really know properly what pacing is now (I find it confusing because of having that ''pacing'' drummed into me) or how to do it - is there a good (easy to read) link anywhere to advice on pacing?

 

Initially, when I rested and stayed at home, I did feel better, and thought this meant that I was well on the way to being cured and so tried to get back into my old life. This always resulted in a relapse. It seems that Action for ME is at a level of understanding where resting is recognized as helpful, but it hasn't yet become clear that this is a chronic condition, and that merely feeling better doesn't mean the illness is gone.

 

I think 'pacing' is really difficult to define, partly because it has become a tool patients feel they need to use in order to avoid being pressured into GET. There is this view that if you are ill you have a responsibility to be doing some treatment to get better, even when there isn't good evidence that anything in particular is effective. Saying 'I find pacing a helpful way of managing my illness' can just be a way of saying 'leave me to live my own life without interference... I'm doing something that sounds vaguely medicalised!'.

 

I don't have a link for you but, for me, pacing is just living as much as I possibly can underneath the hard 'cap' on my energy levels. How do I know where that cap is, I hear you ask - there is no trick to it, I have learnt my limits through painful experience, by trying to do something and finding that it was too much. Enough times doing that and I started to be aware of certain warning signs and I'm able to use those as a signal to moderate my levels of exertion, where possible, to avoid over exerting.

Hope that helps, sorry it's not more guide-like.

 

I agree that this difficult issue needs to be broached quite early in the course of an individual's ME, and returned to later as it can be difficult for people to hear it and to take it in.

It took me some twenty years years of this condition to truly take on board that any improvement is potentially reversible, that I could deteriorate as well as improve. Most doctors have been ambiguous in what they have said to me, leaving me with a false optimism. I repeatedly responded to improvement by doing more and more until I then suffered significant relapse.

We need clearer cut long term information on prognosis, to understand that for some if not the majority of us any improvement can be reversed at an instant. For example I have twice ended up bedbound in half renovated houses in circumstances that could have been avoided if I had allowed for the possibility of relapse. Alternatively a friend with mild ME, after a holiday on a Greek island, felt she had made a significant improvement, so she left her job and released all her capital to create an extended holiday on the same island for nine months. It seemed to work and she returned to England believing herself fully recovered. She took on a full time locum job, but after a couple of weeks had a major relapse; largely bedbound she was never able to work again, but with no access to ill health retirement, no home and no savings.

 

That’s really helpful - yes, thanks

 

The main proponents of pacing are Ellen Goudsmit and Leonard Jason. They have written a consensus document together, sketching what pacing means and how it differs from GET. It's open access: https://www.researchgate.net/public...chronic_fatigue_syndrome_A_consensus_document

There's also some basic information about pacing on MEpedia: https://me-pedia.org/wiki/Pacing

 

They’re both also patients.

 

Very good article.

I agree with all who said pacing does not lead to recovery, and pacing does not involve gradually increasing activity over time. Muddling it in with GET misinforms the reader.

This is the public relations/glossy brochure approach to a devastating physical illness.
As my husband said, it's the "Bugs Bunny" model of disability and illness. When the rock falls on Wiley Coyote in real life, he does not get up and run away!