Physios for ME comment on Pacing Guidelines
As Physios for ME we consistently hear from people with ME that pacing is one of the most useful strategies for managing their condition so have been following the work of Antcliff et al with interest. Antcliff and her colleagues highlight two types of pacing in their first article
1) “Symptom contingent pacing”; activities are driven by perceived symptom levels, with the aim of avoiding symptoms/conserving energy
2) “Quota-contingent pacing”; undertaking activities according to an amount/distance/goal with the aim of improving function
We understand from communication with the authors that that respondents in their survey of health professionals showed a preference towards quota-contingent pacing and this latest publication suggests that quota contingent approach drives the framework they have developed and tested in their second study published this week
As physios we do recognise the use of quota-contingent pacing for the management of pain and fatigue (such as cancer related fatigue).
However, we believe there is an important place for symptom contingent pacing for people with ME, due to the post exertional malaise (PEM) that is a hallmark symptom of this disease. PEM is the marked symptom exacerbation when people with ME exceed a certain activity level which can persist for days, weeks and even months after exertion.
The recent publications from Davenport et al (2019) and Lien et al (2019) amongst others clearly show that people with ME have an abnormal response to exertion, with the associated potential for activity/exercise to cause an increase in symptoms (ie post exertional malaise) and often significant lasting harm.
The survey conducted on behalf of Forward-ME (2019) by Professor Helen Dawes and her team at Oxford Brookes University provides one such example of the increase in symptoms experienced by people with ME in response to exercise, where over 80% of respondents who increased their activity levels through graded exercise reported getting worse.
Our concern with the quota contingent approach to pacing in the framework proposed by Antcliff et al is the potential for inadvertent harm if the pacing framework is used for people with ME/CFS , especially in light of the fact that the framework development has drawn on input from specialist ME/CFS services. This framework perpetuates the error made by many health professionals in using the term "chronic fatigue" interchangeably with "CFS", suggesting there is no differentiation between the two. "Chronic fatigue" and "chronic pain" do seem to benefit from quota contingent pacing and graded exercise. But there is a distinct lack of awareness in many sectors of the difference between these presentations, and the multi system disease of ME / CFS.
The debate regarding diagnostic criteria for ME/CFS means that a cohort of people with a diagnosis of ME/CFS could possibly include a mix of those with ME and associated PEM and those with other fatigue-related conditions (Smith et al 2016, p1) leading to a false impression that people with ME can be safely treated and improved with quota contingent pacing. This article from MEAction provides a useful insight into the different diagnostic criteria for ME and related disease.
Our main concern is that the pacing framework being developed will fail to alert practitioners to the vital distinction between conditions and that these potentially harmful pacing approaches will be applied to a vulnerable patient group. The activity pacing framework could offer an exciting opportunity to support safe, appropriate management for this group of patients but we feel that it is essential that the distinction between “chronic fatigue” relate conditions and ME / CFS, should form an integral part of this work.
We have written to the authors to suggest that they consider this further before completion of the project and have offered our assistance in the signposting of relevant information
Antcliff et al (2019) Survey of activity pacing across healthcare professionals informs a new activity pacing framework for chronic pain/fatigue. Musculoskeletal Care. 2019 Aug 20. doi: 10.1002/msc.1421. [Epub ahead of print]
Antcliff et al (2019) Engaging stakeholders to refine an activity pacing framework for chronic pain/fatigue: A nominal group technique.Musculoskeletal Care. 2019 Nov 21. doi: 10.1002/msc.1430.
Forward ME (2019) Here
Davenport et al (2019) Chronotropic Intolerance: An Overlooked Determinant of Symptoms and Activity Limitation in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome? Front Pediatr. 2019 Mar 22;7:82. doi: 10.3389/fped.2019.00082. eCollection 2019. Review.
Lien et al (2019) Abnormal blood lactate accumulation during repeated exercise testing in myalgic encephalomyelitis/chronic fatigue syndrome. Physiol Rep. 2019 Jun;7(11):e14138. doi: 10.14814/phy2.14138.
Smith at al (2016) Addendum to Diagnosis and Treatment of Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome. Evidence Reports/Technology Assessments, No. 219. Agency for Healthcare Research and Quality (US)
First published on social media 23 November 2019 .