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• Adapting to living with CFS/ME
  Jemel A Aguilar
  Published on: 15 July 2019
• Targeting activity levels in ME/CFS
  Michiel Tack
  Published on: 26 June 2019

• Published on: 15 July 2019

  Adapting to living with CFS/ME

  • Jemel A Aguilar, Professor/Researcher Southern Connecticut State University

  The authors' aim to explore the underlying patterns of physical activity among youth with mild to moderate CFS/ME found sub-groups of activity patterns including active light, and non-active as measured by accelerometer. While the authors discuss the relationship between physical activity and symptoms of CFS/ME, the authors do not operationalize the vigorous or increase in physical activity prior to the analysis. Thus it is unclear how to compares the physical activity observed in the study to that found in other studies or with populations where fatigue is a prominent symptom of a chronic disease.

  Additionally, missing from the analysis is a baseline of youth activity to control for any changes that the accelerometer might produce or as a result of participating in the study. The importance of this baseline also establishes if past activity patterns might indicate 'moments' of vigorous activity or increased activity that lead to physical crashes reported by many people living with ME/CFS. Avoiding vigorous activity or becoming anxious about physical activity might also explain the levels of activity discussed in the study. Adding a qualitative protocol to this study might highlight relationships between quantitative variables such as physical activity and anxiety or other variables not previously identified by the researchers.

  Finally, the researchers indicate that consulting a patient advisory group, but do not provide any descriptions o...

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  The authors' aim to explore the underlying patterns of physical activity among youth with mild to moderate CFS/ME found sub-groups of activity patterns including active light, and non-active as measured by accelerometer. While the authors discuss the relationship between physical activity and symptoms of CFS/ME, the authors do not operationalize the vigorous or increase in physical activity prior to the analysis. Thus it is unclear how to compares the physical activity observed in the study to that found in other studies or with populations where fatigue is a prominent symptom of a chronic disease.

  Additionally, missing from the analysis is a baseline of youth activity to control for any changes that the accelerometer might produce or as a result of participating in the study. The importance of this baseline also establishes if past activity patterns might indicate 'moments' of vigorous activity or increased activity that lead to physical crashes reported by many people living with ME/CFS. Avoiding vigorous activity or becoming anxious about physical activity might also explain the levels of activity discussed in the study. Adding a qualitative protocol to this study might highlight relationships between quantitative variables such as physical activity and anxiety or other variables not previously identified by the researchers.

  Finally, the researchers indicate that consulting a patient advisory group, but do not provide any descriptions of the participants - such as length of time they have been living with ME/CFS, gender, ethnicity, or illness severity - or the role of this group in the design of the research study and selection of instruments for the study. This background information can explain the relationship between the patient advisory group and the study.

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  Conflict of Interest:
  None declared.

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• Published on: 26 June 2019

  Targeting activity levels in ME/CFS

  • Michiel Tack, ME/CFS patient Independent researcher

  Michiel Tack

  Email Address *
  tackmichiel@gmail.com

  Occupation *
  ME/CFS patient

  Affiliation *
  Independent researcher

  Contrary to what is claimed by Solomon-Moore et al., [1] the study by Van der Werf et al., (reference 17) [2] found little evidence of a boom and bust activity pattern in adult patients with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). The Dutch researchers measured physical activity using actimeters worn for 12 consecutive days. There was no significant difference in day-to-day fluctuations in physical activity between ME/CFS patients and controls. The peak amplitude and peak duration of physical activity were larger in controls than in ME/CFS patients while the latter had longer rest duration after an activity peak. Another actimeter study [3] found no supporting evidence of a more fluctuating activity pattern in patients with ME/CFS compared to controls, during the day, nor during consecutive days. Now, Solomon-Moore et al. report that in children and adolescents with ME/CFS, no fluctuating active or boom-bust physical activity pattern could be identified.

  It would be helpful if the authors could clarify how the actimeter data impacted the treatments in the MAGENTA trial. According to the trial protocol [4], one of the interventions aimed to “convert a boom–bust pattern of activity (lots 1 day and little the next) to a baseline with the same da...

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  Michiel Tack

  Email Address *
  tackmichiel@gmail.com

  Occupation *
  ME/CFS patient

  Affiliation *
  Independent researcher

  Contrary to what is claimed by Solomon-Moore et al., [1] the study by Van der Werf et al., (reference 17) [2] found little evidence of a boom and bust activity pattern in adult patients with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). The Dutch researchers measured physical activity using actimeters worn for 12 consecutive days. There was no significant difference in day-to-day fluctuations in physical activity between ME/CFS patients and controls. The peak amplitude and peak duration of physical activity were larger in controls than in ME/CFS patients while the latter had longer rest duration after an activity peak. Another actimeter study [3] found no supporting evidence of a more fluctuating activity pattern in patients with ME/CFS compared to controls, during the day, nor during consecutive days. Now, Solomon-Moore et al. report that in children and adolescents with ME/CFS, no fluctuating active or boom-bust physical activity pattern could be identified.

  It would be helpful if the authors could clarify how the actimeter data impacted the treatments in the MAGENTA trial. According to the trial protocol [4], one of the interventions aimed to “convert a boom–bust pattern of activity (lots 1 day and little the next) to a baseline with the same daily amount”. Was this aspect removed from the intervention now that participants showed little indication of a boom–bust activity pattern? Or were young ME/CFS patients instructed to correct illness behavior they did not display when tested objectively?

  Solomon-Moore et al., [1] also report that 9.4% of participants achieved government recommended levels of physical activity for children and adolescents, namely a minimum of 60 minutes of moderate to vigorous physical activity per day. This is of interest given that approximately half of healthy children and adolescents do not reach this target. [1] These results indicate that activity patterns are unlikely to be a key factor in perpetuating ME/CFS symptoms, at least for this subgroup. Nonetheless, one of the interventions in the MAGENTA trial aims for a gradual increase in physical activity by prescribing exercise targets. Were ME/CFS patients who already met government health recommendations for physical activity also instructed to increase their amount of exercise by 10-20% a week or were they exempted?

  I look forward to reading the authors’ response to these questions.

  References

  [1] Solomon-Moore E, Jago R, Beasant L, Brigden A, Crawley E. Physical activity patterns among children and adolescents with mild-to-moderate chronic fatigue syndrome/myalgic encephalomyelitis. BMJ Paediatr Open. 2019 May 2;3(1):e000425. 2019.

  [2] van der Werf SP, Prins JB, Vercoulen JH, et al. Identifying physical activity patterns in chronic fatigue syndrome using actigraphic assessment. J Psychosom Res 2000;49:373–9.

  [3] Meeus M, van Eupen I, van Baarle E, De Boeck V, Luyckx A, Kos D, et al. Symptom fluctuations and daily physical activity in patients with chronic fatigue syndrome: a case-control study. Arch Phys Med Rehabil. 2011 Nov;92(11):1820-6.

  [4] Brigden A, Beasant L, Hollingworth W, et al. Managed activity graded exercise iN teenagers and pre-Adolescents (magenta) feasibility randomised controlled trial: study protocol. BMJ Open 2016;6:e011255.

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  Conflict of Interest:
  None declared.

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