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== Other forms of pacing used in ME/CFS == === Energy Envelope Theory === {{Main article|page_name=Energy Envelope Theory}}<div role="note" class="hatnote navigation-not-searchable">{{Main article|page_name=Energy Envelope Theory}}</div><span></span> [[Leonard Jason]]'s [[Energy Envelope Theory|energy envelope theory]] is very similar to pacing. Patients are advised to stay within their envelope; meaning the limits the disease has imposed upon them. According to Jason: "the phrase, 'staying within the envelope' is used to designate a comfortable range of energy expenditure, in which an individual avoids both over-exertion and under-exertion, maintaining an optimal level of activity over time.”<ref>{{Cite journal | last= Jason | first = Leonard | last2 = Benton | first2 = Mary | date = Nov 2009| title = The Impact of Energy Modulation on Physical Functioning and Fatigue Severity among Patients with ME/CFS|url=https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2767446/|journal=Patient education and counseling|volume=77|issue=2|pages=237–241|doi=10.1016/j.pec.2009.02.015|issn=0738-3991|pmc=2767446|pmid=19356884}}</ref> Research has shown that ME/CFS patients who go beyond their envelope and spent more energy than they estimate to have, experience more symptoms over time.<ref name=":10" /><ref name=":11" /> ===Adaptive pacing therapy (APT) === A modified form of pacing is called adapative pacing therapy (APT). This version was promoted by [[Action for ME]]<ref name=":12" /> and was used in the [[PACE trial]]<ref>Cox et al. (2004) [https://www.qmul.ac.uk/wolfson/media/wolfson/current-projects/2.apt-participant-manual.pdf Manual for participants Adaptive Pacing Therapy for CFS/ME.] </ref> as an alternative to [[cognitive behavioral therapy]], [[graded exercise therapy]] and specialist medical care. There are some major differences between APT and the original form of pacing advocated by Goudsmit. The former for example stresses splitting up activities, while this is not necessarily an advice used in the latter. APT seems more influenced by chronic pain literature as it gives more weight to planning and building up activities. A booklet on pacing, produced by Action for ME explains to patients: “you are likely to notice a temporary increase in stiffness or fatigue when increasing your activity levels. This is normal and your body will need a few days to adjust and adapt.”<ref name=":12" /> No such advice is given in the pacing, developed by Goudsmit or Jason as this may not be adequate in the treatment of patients with ME/CFS. One of the (anonymous) participants in the 2015 ME association survey, for example, complained that pacing put too much emphasis on increasing activity:<blockquote>"It taught me to listen to my body and not ignore symptoms and I gradually began to see the link between exercise/activity and delayed fatigue, which I hadn't done beforehand. That was crucial in slowing down my deterioration. But I wish someone had said 'if you are experiencing symptoms you should rest' – the message was, 'you can get worse briefly but symptoms should then go again'. I kept waiting for them to go and they never did. Then I had a massive relapse which I have not recovered from. Pacing is not very satisfactory – it is full of confusing contradictory messages […] I felt the emphasis was too heavily on increasing activity – I should have been told to rest.”<ref name=":7" /></blockquote>These criticisms seem to apply to APT, and not to pacing. Another major difference is that APT promotes the use of preemptive rest. In the [[PACE trial]] for example patients were advised to follow the 70%-rule, meaning they shouldn’t go beyond 70% of their perceived energy. This is also not an element in the writings of Goudsmit or Jason, where patients are advised to correctly balance perceived energy and energy expenditure. Telling ME/CFS patients to do even less than their perceived energy limit might have negative consequences, as was noticed by Leonard Jason: “By doing less than what patients have the energy to do, and the resulting preemptive rest, this intervention could even have the unwitting effects of increasing social isolation.”<ref name=":13">{{Cite journal | last= Jason | first = Leonard A| date = 2017-08-01| title = The PACE trial missteps on pacing and patient selection | url =https://doi.org/10.1177/1359105317695801|journal=Journal of Health Psychology|language=en|volume=22|issue=9|pages=1141–1145|doi=10.1177/1359105317695801|issn=1359-1053}}</ref> This was what Goudsmit found in the clinical trial where the protocol of Ho Yen was tested. The treatment arm also included preemptive rest and some patients said they felt isolated as a result of the prescribed reduction in activity.<ref name=":2" /> Finally, APT proposes pacing as a therapy, while Goudsmit has emphasized the opposite. She explicitly warned that: “both the rationale behind pacing and the findings from controlled trials do not support the promotion by some patient groups of pacing as a “therapy” for CFS. […] given the lack of evidence that this strategy can alleviate a range of symptoms and promote healing, descriptions of pacing as a form of therapy may be construed as misleading.”<ref name=":0" /> The findings of the PACE-trial, analyzed according to the original protocol, did not find a significant difference between APT, specialist medical care, graded exercise therapy or cognitive behavioral therapy. Jason remarked that the label APT, included much more than pacing: “It is important to note that APT (Cox et al., 2004) also included advice on stress management, sleep, and so on, and this makes it difficult to determine what was effective or ineffective if one cannot separate the effects […] the authors evaluated APT, not solely pacing.”<ref name=":13" /> According to Goudsmit and Howes, “the differences between APT and pacing almost certainly explain the discrepancy between the results relating to the former, and the research as well as positive experiences of pacing reported by patients in surveys conducted by support groups.”<ref>{{Cite journal | last = Goudsmit | first = Ellen | last2 = Howes | first2 = Sandra | date = 2017-08-01| title = Bias, misleading information and lack of respect for alternative views have distorted perceptions of myalgic encephalomyelitis/chronic fatigue syndrome and its treatment|url=https://doi.org/10.1177/1359105317707216|journal=Journal of Health Psychology|language=en|volume=22|issue=9|pages=1159–1167|doi=10.1177/1359105317707216|issn=1359-1053}}</ref> === Activity pacing-self management === Another form of pacing, Activity Pacing Self-Management (APSM) is promoted by the Belgian research group of [[Jo Nijs]], one of the authors of the 2012 consensus document on pacing. His version of pacing is more in line with the tradition of operant conditioning in the chronic pain literature, and less with the principles of energy conservation. According to Nijs, the PACE authors made a mistake by placing pacing and [[Graded exercise therapy|GET]] in opposition to each other, as it is more effective to use both strategies in the treatment of ME/CFS.<ref name=":14">{{Cite journal | last = Kos | first = Daphne | last2 = van Eupen | first2 = Inge | last3 = Meirte | first3 = Jill | last4 = Van Cauwenbergh | first4 = Deborah | last5 = Moorkens | first5 = Greta | last6 = Meeus | first6 = Mira | last7 = Nijs | first7 = Jo| date = Sep 2015 | title = Activity Pacing Self-Management in Chronic Fatigue Syndrome: A Randomized Controlled Trial|url=https://www.ncbi.nlm.nih.gov/pubmed/26356665|journal=The American Journal of Occupational Therapy: Official Publication of the American Occupational Therapy Association|volume=69|issue=5 | pages = 6905290020|doi=10.5014/ajot.2015.016287|issn=1943-7676|pmc=4564796|pmid=26356665}}</ref> Nuñes (2011) also used a pacing approach to physical activity and exercise, with positive results.<ref name="Nunes2011" /> In APSM patients first learn to pace themselves to find a baseline of activity that doesn’t result in relapses. Only if they’ve managed to stabilize their condition - and this might take several weeks - can they proceed to the next phase which aims to gradually increase activities according to time-contingent scheme. In APSM pacing is thus used a stepping stone to graded exercise therapy. Nijs' research group tested the APSM approach in a 2015 randomized control trial in which the control group received relaxation therapy.<ref name=":14" /> The results were favorable for APSM, though no objective performance measures were used. The study was also rather small as only 16 ME/CFS patients were involved in the experimental group, of which 4 (25%) stopped the treatment prematurely. {{See also|Graded exercise therapy}} === Pacing for chronic pain patients: === In 2018, Thomson et al., a research team at the University of Manchester, studied pacing in 114 ME/CFS patients using the Chronic Pain Coping Inventory (CPCI).<ref name=":15">{{Cite journal | last = Thompson | first = D. P. | last2 = Antcliff | first2 = D. | last3 = Woby | first3 = S.R. | date = Mar 2018| title = Symptoms of chronic fatigue syndrome/myalgic encephalopathy are not determined by activity pacing when measured by the chronic pain coping inventory|url=https://www.ncbi.nlm.nih.gov/pubmed/28843450|journal=Physiotherapy|volume=104|issue=1|pages=129–135|doi=10.1016/j.physio.2017.07.005|issn=1873-1465|pmid=28843450}}</ref> In 2001, Nielson et al. had added six questions to this questionnaire to assess the use of pacing.<ref>{{Cite journal | last = Nielson | first = W.R. | last2 = Jensen | first2 = M.P. | last3 = Hill | first3 = M.L. | date=Jan 2001| title = An activity pacing scale for the chronic pain coping inventory: development in a sample of patients with fibromyalgia syndrome|url=https://www.ncbi.nlm.nih.gov/pubmed/11166466|journal=Pain|volume=89|issue=2-3|pages=111–115|issn=0304-3959|pmid=11166466}}</ref> As the CPCI was designed for patients with chronic pain, the added pacing section focuses on doing things “slow and steady” and breaking up tasks into manageable pieces, instead on listening to symptom-flare ups and balancing energy expenditure. This form of pacing thus differs significantly form the version promoted by Goudsmit and Jason. Thomson et al. searched for cross-sectional associations between pacing and levels of pain, disability and fatigue, but made a remarkable choice in outcome measures. For fatigue they used the [[Chalder fatigue scale|Chalder Fatigue Scale]] with Likert score, despite detailed criticism of this method.<ref>{{Cite news | url=https://www.s4me.info/threads/s4me-submission-to-the-public-review-on-common-data-elements-for-me-cfs-problems-with-the-chalder-fatigue-questionnaire.2065/| title = S4ME: Submission to the public review on common data elements for ME/CFS: Problems with the Chalder Fatigue Questionnaire|work=Science for ME|access-date=2018-08-20|language=en-US}}</ref> Disability was assessed using the Fibromyalgia Impact Questionnaire (FIQ) physical impairment subscale, on the basis that ME/CFS- and fibromyalgia patients share many symptoms. Using these outcome measures, Thompson et al. found no significant associations between pacing and levels of pain, fatigue or disability. In the second part of the study, a smaller sample of 35 ME/CFS patients followed a graded exercise program. Although participants reported significant reductions in fatigue, these improvements were not explained by pacing as measured with the CPCI. According to the authors “It would therefore seem that factors other than pacing were more important determinants of improvements following treatment.”<ref name=":15" />
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