http://informahealthcare.com/dre ISSN 0963-8288 print/ISSN 1464-5165 online Disabil Rehabil, 2015; 37(5): 466–467 ! 2014 Informa UK Ltd. DOI: 10.3109/09638288.2014.952456
LETTER TO THE EDITOR
Elements of rehabilitative strategies associated with negative outcomes in CFS/ME: the need for further investigations Tom Kindlon Irish ME/CFS Association, Dublin, Ireland
Gladwell et al. should be congratulated for examining the neglected area of negative responses which some patients with chronic fatigue syndrome/myalgic encephalomyelitis/(CFS/ME) have experienced with rehabilitative interventions [1]. As they highlighted, surveys in the UK have found relatively high rates of adverse reactions, and given the consistency between the different countries and different times, these findings are significant. For example, I analysed data from surveys in the Netherlands, Norway, the US along with the UK and found that 51.24% (2223/ 4338) of those who had undertaken a graded exercise therapy (GET) programme reported being made worse by it [2]. However, I am not persuaded by their suggestion that problems can be attributed to a lack of adherence to the guidelines produced by NICE (National Institute for Health and Clinical Excellence) and those in the PACE Trial [3,4]. One problem is that the NICE guidelines themselves are not necessarily based on the same model as was assessed in the PACE Trial. Gladwell et al. highlight how the NICE guidelines suggest that with setbacks/ relapses, it may be necessary ‘‘to reduce, or even stop, some activities and increase the frequency and/or duration of rest periods’’ [1]. This contrasts with the protocol in the PACE Trial [4] where what participants are asked to do is determined by ‘‘their planned physical activity, and not their symptoms’’ (p. 20); similarly, ‘‘a central concept of GET is to MAINTAIN exercise as much as possible during a CFS/ME setback’’ (p. 51) and ‘‘if the participant reports an increase in fatigue as a response to a new level of exercise, they should be encouraged to remain at the same level for an extra week or more’’ (p. 66). The approach in the PACE Trial could be described as inflexible and prescriptive, attributes which Gladwell et al. describe as lowering quality [1]. Gladwell et al. state that ‘‘the negative experiences reported within this survey may be contrasted with the general satisfaction reported by patients taking part in the PACE Trial’’. However, the validity of single-item satisfaction measures, such as used in the PACE Trial, is questionable, partly due to their tendency to overestimate satisfaction [5]. Managing activity according to symptoms to limit exertionrelated exacerbations is usually described in the CFS/ME literature as pacing [6]. An analysis of data on pacing from the
Address for correspondence: Tom Kindlon, Information Officer (voluntary position), Irish ME/CFS Association, PO Box 3075, Dublin 2, Ireland. Tel: 0035 312350965. E-mail: [email protected]
surveys revealed a much lower rate of deterioration, 2.58% (n ¼ 5894), compared to graded exercise regimes [2]. Interestingly, pacing can be combined with exercise. For example, in one Australian study, ‘‘on days when symptoms are worse, patients should either shorten the session to a time they consider manageable or, if feeling particularly unwell, abandon the session altogether’’ [7]. It is unclear which type of regime (graded exercise with or without pacing), is associated with the better results in a study by Gladwell et al. The authors posit that the level of supervision may explain the results that are less than satisfactory in patient organisation surveys. They have noted that in one survey, 40% of those trying GET had been unsupervised and that in a 2008. Action for ME report, respondents whose GET was supervised by their General Practitioners rather than by ‘‘NHS specialists’’ more often reported worse outcomes [7]. However, this does not prove that unsupervised therapy is necessarily worse. Indeed, the third group in that survey, described as ‘‘other’’, reported marginally lower rates of deterioration (28.93%, 46/181) than those who had undertaken GET with a NHS specialist (31.27%, 111/355) [8]. In conclusion, the more in-depth examination of patient experiences of rehabilitative programmes the authors presented is to be welcomed. However, the lack of any quantitative analysis means any conclusions should be seen as tentative. Further quantitative research is needed to ascertain more accurately the elements of exercise programmes associated with poorer outcomes in CFS/ME.
Declaration of interest The author reports no conflicts of interest. The author alone is responsible for the content and writing of this article. The author works in a voluntary capacity for the Irish ME/CFS Association.
References 1. Gladwell PW, Pheby D, Rodriguez T, Poland F. Use of an online survey to explore positive and negative outcomes of rehabilitation for people with CFS/ME. Disabil Rehabil 2014;36:387–94. 2. Kindlon T. Reporting of harms associated with graded exercise therapy and cognitive behavioural therapy in myalgic encephalomyelitis/chronic fatigue syndrome. Bulletthe IACFS/ME 2011;19: 59–111. 3. National Institute for Health and Clinical Excellence. Clinical guideline CG53. Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy): diagnosis and management. London, UK: NICE; 2007.
DOI: 10.3109/09638288.2014.952456
4. Bavinton J, Darbishire L, White PD - on behalf of the PACE trial management group. Graded exercise therapy for CFS/ME (Therapist manual): http://www.pacetrial.org/docs/gettherapist-manual.pdf [last accessed 5 October 2013]. 5. Heidegger T, Saal D, Nuebling M. Patient satisfaction with anaesthesia care: what is patient satisfaction, how should it be measured, and what is the evidence for assuring high patient satisfaction? Best Pract Res Clin Anaesthesiol 2006;20:331–46. 6. Goudsmit EM, Nijs J, Jason LA, Wallman KE. Pacing as a strategy to improve energy management in myalgic encephalomyelitis/
Negative outcomes and rehabilitation in CFS/ME
467
chronic fatigue syndrome: a consensus document. Disabil Rehabil 2012;34:1140–7. 7. Wallman KE, Morton AR, Goodman C, Grove R. Exercise prescription for individuals with chronic fatigue syndrome. Med J Aust 2005;183:142–3. 8. Action for ME and Association of Young People with ME. ME 2008: What progress? 2008 May. Available at: http://www.ayme.org. uk/files/MEAW2008-report.pdf. (Additional information:http:// afme.wordpress.com/) [last accessed 5 October 2013].
Copyright of Disability & Rehabilitation is the property of Taylor & Francis Ltd and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use.
LETTER TO THE EDITOR
Elements of rehabilitative strategies associated with negative outcomes in CFS/ME: the need for further investigations Tom Kindlon Irish ME/CFS Association, Dublin, Ireland
Gladwell et al. should be congratulated for examining the neglected area of negative responses which some patients with chronic fatigue syndrome/myalgic encephalomyelitis/(CFS/ME) have experienced with rehabilitative interventions [1]. As they highlighted, surveys in the UK have found relatively high rates of adverse reactions, and given the consistency between the different countries and different times, these findings are significant. For example, I analysed data from surveys in the Netherlands, Norway, the US along with the UK and found that 51.24% (2223/ 4338) of those who had undertaken a graded exercise therapy (GET) programme reported being made worse by it [2]. However, I am not persuaded by their suggestion that problems can be attributed to a lack of adherence to the guidelines produced by NICE (National Institute for Health and Clinical Excellence) and those in the PACE Trial [3,4]. One problem is that the NICE guidelines themselves are not necessarily based on the same model as was assessed in the PACE Trial. Gladwell et al. highlight how the NICE guidelines suggest that with setbacks/ relapses, it may be necessary ‘‘to reduce, or even stop, some activities and increase the frequency and/or duration of rest periods’’ [1]. This contrasts with the protocol in the PACE Trial [4] where what participants are asked to do is determined by ‘‘their planned physical activity, and not their symptoms’’ (p. 20); similarly, ‘‘a central concept of GET is to MAINTAIN exercise as much as possible during a CFS/ME setback’’ (p. 51) and ‘‘if the participant reports an increase in fatigue as a response to a new level of exercise, they should be encouraged to remain at the same level for an extra week or more’’ (p. 66). The approach in the PACE Trial could be described as inflexible and prescriptive, attributes which Gladwell et al. describe as lowering quality [1]. Gladwell et al. state that ‘‘the negative experiences reported within this survey may be contrasted with the general satisfaction reported by patients taking part in the PACE Trial’’. However, the validity of single-item satisfaction measures, such as used in the PACE Trial, is questionable, partly due to their tendency to overestimate satisfaction [5]. Managing activity according to symptoms to limit exertionrelated exacerbations is usually described in the CFS/ME literature as pacing [6]. An analysis of data on pacing from the
Address for correspondence: Tom Kindlon, Information Officer (voluntary position), Irish ME/CFS Association, PO Box 3075, Dublin 2, Ireland. Tel: 0035 312350965. E-mail: [email protected]
surveys revealed a much lower rate of deterioration, 2.58% (n ¼ 5894), compared to graded exercise regimes [2]. Interestingly, pacing can be combined with exercise. For example, in one Australian study, ‘‘on days when symptoms are worse, patients should either shorten the session to a time they consider manageable or, if feeling particularly unwell, abandon the session altogether’’ [7]. It is unclear which type of regime (graded exercise with or without pacing), is associated with the better results in a study by Gladwell et al. The authors posit that the level of supervision may explain the results that are less than satisfactory in patient organisation surveys. They have noted that in one survey, 40% of those trying GET had been unsupervised and that in a 2008. Action for ME report, respondents whose GET was supervised by their General Practitioners rather than by ‘‘NHS specialists’’ more often reported worse outcomes [7]. However, this does not prove that unsupervised therapy is necessarily worse. Indeed, the third group in that survey, described as ‘‘other’’, reported marginally lower rates of deterioration (28.93%, 46/181) than those who had undertaken GET with a NHS specialist (31.27%, 111/355) [8]. In conclusion, the more in-depth examination of patient experiences of rehabilitative programmes the authors presented is to be welcomed. However, the lack of any quantitative analysis means any conclusions should be seen as tentative. Further quantitative research is needed to ascertain more accurately the elements of exercise programmes associated with poorer outcomes in CFS/ME.
Declaration of interest The author reports no conflicts of interest. The author alone is responsible for the content and writing of this article. The author works in a voluntary capacity for the Irish ME/CFS Association.
References 1. Gladwell PW, Pheby D, Rodriguez T, Poland F. Use of an online survey to explore positive and negative outcomes of rehabilitation for people with CFS/ME. Disabil Rehabil 2014;36:387–94. 2. Kindlon T. Reporting of harms associated with graded exercise therapy and cognitive behavioural therapy in myalgic encephalomyelitis/chronic fatigue syndrome. Bulletthe IACFS/ME 2011;19: 59–111. 3. National Institute for Health and Clinical Excellence. Clinical guideline CG53. Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy): diagnosis and management. London, UK: NICE; 2007.
DOI: 10.3109/09638288.2014.952456
4. Bavinton J, Darbishire L, White PD - on behalf of the PACE trial management group. Graded exercise therapy for CFS/ME (Therapist manual): http://www.pacetrial.org/docs/gettherapist-manual.pdf [last accessed 5 October 2013]. 5. Heidegger T, Saal D, Nuebling M. Patient satisfaction with anaesthesia care: what is patient satisfaction, how should it be measured, and what is the evidence for assuring high patient satisfaction? Best Pract Res Clin Anaesthesiol 2006;20:331–46. 6. Goudsmit EM, Nijs J, Jason LA, Wallman KE. Pacing as a strategy to improve energy management in myalgic encephalomyelitis/
Negative outcomes and rehabilitation in CFS/ME
467
chronic fatigue syndrome: a consensus document. Disabil Rehabil 2012;34:1140–7. 7. Wallman KE, Morton AR, Goodman C, Grove R. Exercise prescription for individuals with chronic fatigue syndrome. Med J Aust 2005;183:142–3. 8. Action for ME and Association of Young People with ME. ME 2008: What progress? 2008 May. Available at: http://www.ayme.org. uk/files/MEAW2008-report.pdf. (Additional information:http:// afme.wordpress.com/) [last accessed 5 October 2013].
Copyright of Disability & Rehabilitation is the property of Taylor & Francis Ltd and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use.
