From Disability and Rehabilitation, May 2012
Pacing as a strategy to improve energy management in myalgic encephalomyelitis/chronic fatigue syndrome: a consensus document
Ellen M. Goudsmit(1), Jo Nijs(2,3,4), Leonard A. Jason(5), Karen E. Wallman(6)
(1) School of Psychology, University of East London, Stratford, London, E15 4LZ, UK
(2) Department of Human Physiology, Faculty of Physical Education & Physiotherapy, Vrije Universiteit Brussel, Belgium
(3) Division of Musculoskeletal Physiotherapy, Department of Health Care, Artesis University College Antwerp, Belgium
(4) Department of Rehabilitation and Physiotherapy, University Hospital Brussels, Belgium
(5) Center for Community Research, DePaul University, Chicago, IL, USA
(6) School of Sport Science, Exercise and Health, The University of Western Australia
Correspondence: Dr. Ellen Goudsmit, 23 Melbourne Road, Teddington, Middlesex, TW11 9QX, UK. E-mail: ellengoudsmit@hotmail.com
Abstract
PURPOSE: Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a debilitating condition characterized by a number of symptoms which typically worsen following minimal exertion. Various strategies to manage the limited energy levels have been proposed. Of these, pacing has been consistently rated as one of the most helpful in surveys conducted by patient groups. This review is a response to the paucity of the information on pacing in the scientific literature
METHOD: We describe the principle of pacing and how this can be adapted to meet individual abilities and preferences. A critical evaluation of the research was conducted to ascertain the benefits and limitations of this strategy
RESULTS: Based on various studies, it is proposed that pacing can help to stabilize the condition and avoid post-exertional malaise.
CONCLUSION: Pacing offers practitioners an additional therapeutic option which is acceptable to the majority of patients and can reduce the severity of the exertion-related symptoms of ME/CFS.
Implications for Rehabilitation
* Pacing is a strategy which helps patients with ME/CFS limit exertion-related increases in symptomatology.
* Pacing is appropriate for those who operating near or at their maximum level of functioning, and for individuals with neurological and immunological abnormalities.
* Pacing may be offered as part of an individualized, multi-component management programme.
Once again ‘pacing’ has been trotted out for its occasional airing.
It’s a wonderful theory, and no doubt for everyone who has servants it’s a fine idea, but for those of us who live alone it’s no more than a theory.
Do I stick to my pacing, or do I make a meal and exhaust myself?
Do I stick to my pacing, or do I wash some of the mountain of dirty clothes – no clean ones left – and exhaust myself?
Etc.
Please, proponents of pacing, consider the single, isolated sufferers who don’t have the luxury of letting some-one else do the essential, tasks required for daily survival.
I agree Soloman, Pacing is indeed very useful tool,BUT as a single person living alone, there is nobody to do those vital daily jobs, I do get some help, I have a cleaner who once every 2 weeks and dose the jobs I can no longer manage at all, I have somebody who comes because also I suffer from syncope episodes coursed by POTS and can no longer safely shower along and a good friend cooks and freezes main meals for me, (Putting them in the mirco is a challenge thou) But then I am alone and no amount of good organisation can enable me to pace adequately. As I tell people the spider in the cupboard, just won’t do what I ask him and you’d think with all those legs he’d be able to do more for me!!!!! Jokes aside, pacing only works when you have a real person full time to help with all the daily tasks that simply HAVE to be done.
Saying that, at least with the “treatment” of pacing as apposed to GET and CBT there is the acknowledgment that ME is a real illness and people with it actuarially need to take care over the amount they do and that doing too much makes them worse. that I think is something.
Well said Soloman. And who are these people who actually have outings for pleasurable purposes rather than for only doing errands? Those with help at home too i suppose.
And you forgot to mention doing everything from putting the bins out, to making up the bed, to organising paperwork etc, oneself.
Hear, hear Tabatha. However, it’s only people who already recognise M.E. as a real illness who advocate pacing; the rest think it’s a mind over matter cure for an all-in-the-mind illness.
Yes, indeed, janehill; there’s a long list of tasks which mean ‘pacing’ is impossible, and I agree – pleasurable outings? – we should be so lucky. When you wake up feeling like death and go downhill for the rest of the day, there ain’t not no such thing as ‘pleasurable outings’. I look forward to the day when I feel well enough for such activities. THEN I’ll try ‘pacing’!
All the above points empathised with but are they missing the point a bit?
The answer to your question Keith, is ‘No’ – pacing is not an option for single people living alone, but nobody wants to acknowledge that.
Pacing is held up as some marvelous way of reducing the severity of the illness – it doesn’t even do that , it just means don’t do anything to make yourself worse – commonsense!
If pacing works for you (not you personally, Keith) – fine, that’s good. But don’t tell us singles its the answer. For me, pacing equals ‘live like a zombie’ – no thanks.
Soloman, it must be awful to be alone with this condition. It’s not any easier when you’re not alone, though. When I became ill my children were 12 and 8. Now they are 22 and 18. The younger one has been ill on and off for three years and has very challenging behaviour which takes its toll on my already depleted energy levels. The 22-year-old is lazy and rarely does anything for me but triples my workload by scattering his belongings all over the house. I pay a friend to come for two hours once a fortnight to clean or iron but she can only come early in the morning when my sick daughter is asleep and so can’t hoover. Today I filled the dishwasher, did a load of washing, did the online shopping, collected prescriptions from the doctor and the medication from the chemist and hoovered the living room. I slept for two hours afterwards and now am too tired to do anything but tomorrow I will get up again to a filthy kitchen, an overflowing laundry basket and full rubbish bins. My husband will cook if I’m really unable to but I don’t like to bother him because he does two jobs and is exhausted when he comes home. All PWME/CFS should have full-time housekeepers, provided free of charge by the local authority!
Eleanor, thank you for your sympathy – and for your suggestion of a free, full-time house-keeper – I like it!
Believe me, I have always felt that having M.E. AND a family(!) must be just as horrible an experience as being alone with the Mighty Exhaustion. I do feel for you – best wishes.
Ah, I’m glad I’m not the only one struggling with this. As a single person living alone, I don’t have enough energy to get even the basics done and so live in perpetual chaos. I’ve been trying to figure out how to pace myself with the suggested 15 mins of activity followed by rest, when just going to the corner shop to get some milk takes longer than that! And as for going out for pleasurable daytrips. Ha ha! If I did manage to force myself out for the day, it wouldn’t be pleasurable given the amount of pain and exhaustion I’m in, and I’d spend several days in bed recovering. That tends to knock pacing on the head.