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Pacing should be key ME/CFS therapy option: Belgian, UK, US & Australian experts explain

  [ 12 votes ]   [ 3 Comments ]
www.ProHealth.com • December 21, 2011

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Article:
Pacing as a strategy to improve energy management in myalgic encephalomyelitis / chronic fatigue syndrome: A consensus document
– Source: Disability and Rehabilitation, Dec 19, 2011

By Ellen M Goudsmit, et al.

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.

Source:
Disability and Rehabilitation, Dec 19, 2011. Goudsmit EM, Nijs J, Jason LA, Wallman KE. University of East London, Stratford, London, UK; Vrije Universiteit Brussel, Belgium; Artesis University College Antwerp, Belgium; University Hospital Brussels, Belgium; DePaul University, Chicago, Illinois, USA;  University of Western Australia. [Email: ellengoudsmit@hotmail.com]



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Re: Pacing should be key ME/CFS therapy option: Belgian, UK, US & Australian experts explain
Posted by: drjohnMEComm
Dec 22, 2011
In advance of reading this paper about pacing (Pacing as a strategy to improve energy management in myalgic encephalomyelitis / chronic fatigue syndrome: A consensus document, Goudsmit et al, 2011) in full - not always easy for long-term sick or disabled people, dependent on benefits, if purchase or subscription is required - it is not possible to assess whether it adds anything to a common sense notion, with which I have never heard anyone disagree: Do as much as you can, without overdoing things, then rest or sleep as required and repeat.

Since, however, there are probably as many models of pacing as there are advocates of it and as many individual differences in estimating the limits of overdoing things, which vary daily, with the unpredictable nature of this illness, it is nigh impossible to compare strategies in any scientifically controlled way.

Most worrying is that some therapists are actually equating "pacing" (almost universally agreed as "helpful") with "Graded Exercise Therapy" (GET), which all research to date shows makes a majority of people with M.E. worse (Twisk & Maes, 2009), some irrecoverably so.

My note of caution is that we must be sure exactly what it is that we are talking about before we can decide whether something is advisable and should be embraced or is to be avoided like the plague.
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Pacing
Posted by: jolico
Dec 23, 2011
Too near the holidays to read the article, but still have my two cents' worth. For some of us, the fatigue is already bad enough, but some also live with pain, at times extreme. Some of the pain may or may not be caused by ME (who knows?), because it is a response to any tiny change in the weather (the wind rising, turning; temps falling or rising by too many degrees; humidity increasing, barometric pressure falling - put these last two together and you can hear me screaming from sea to shining sea). On bad days when the pain is pure torture, there is nothing to pace. On days of just base pain and regular fatigue, I have about two hours of "power". On good days, which have become rarer and rarer since I passed the 60 milestone, I have a bit more than the two hour cut-off for possible activity. Living alone, probably like many of us, that means that on regular days, just doing the necessary things like getting food, cooking it, doing laundry, a bit of cleaning is the max. On the rare better days, a walk in my special park is my favourite activity unless a friend is available for lunch. On bad days, just trying to handle the pain, just changing from nightie to my nasty indoor clothes and going from sofa to kitchen to bathroom is all that can be handled. I don't see any way to "pace" anything over two hours on the regular days. On the rarer good days, what has been neglected gets done, forget about pacing! There just isn't any time for it!

 


Pacing
Posted by: lovinherbs
Dec 28, 2011
Any person having M.E.for years, more than likely has developed "pacing" on their own.

By lots of trial and error and continually trying to find a way to somehow live life despite my illness, I found pacing the only solution years ago.

To keep from being bedbound, I must pace. This is not to say pacing can keep a person challenged with M.E. from being bedbound. I'm only saying that for me, it works the majority of the time.

I set a timer. Between rests, some days are five minute days, some are 30 minute days. Some days are 20 minute breaks between activity periods, and some days are three hour breaks between 5 minutes of activity. Some days I can't set the timer and need to rest all day.

As already stated, pacing is not GET (Graded Exercise Therapy), it is simply a therapeutic way to achieve the highest quality of life I can have. It's surprising what I can accomplish in a thirty minutes, broken down into increments with rests between. It empowers me. Instead of saying "I can't." I'm able to say, "I can, it will just take me longer and it will be finished when it's finished." My body doesn't cooperate with deadlines, although with pacing, it is possible to achieve goals. Accepting and honoring my limitations through pacing is the most important thing I can do for my myself and my loved ones. Hoping for a Cure, Tamara Parsons
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