Activity and Energy Management – Pacing

Activity and Energy Management – Pacing
“Pacing is an individualized approach to managing physical, cognitive, and emotional energy within a patient’s specific limits by carefully planning where and how to spend their available energy. It is a critical tool to prevent and/or reduce PEM” - Diagnosing and treating ME/CFS - ME/CFS Clinician Coalition USA July 2020

Diagnosing and treating ME/CFS – ME/CFS Clinician Coalition USA July 2020

“Striking the right balance between activity and rest is one of the most difficult aspects of coming to terms with M.E. On one hand is the need to take an appropriate amount of rest and relaxation, especially during the very early stages, as well as during periods of relapse or an exacerbation of symptoms. On the other is a natural desire to want to increase physical and mental activity when you’re starting to feel that some improvement is, at last, being made. Achieving the right balance also has to take into account the fact that exceeding your limitations by sometimes only a very small amount can easily cause an exacerbation of symptoms…”

– ME Association website

A transcript of “Activity Management – Pacing” is available here

NICE Guideline Page 70

“The key component [of energy management] is understanding the principle of using energy in a way to minimise post-exertional malaise.”

Energy Management:
• is not curative
• is a self-management strategy led by the person themselves…
• includes all types of activity (cognitive, physical, emotional and social) and takes into account overall level of activity
• helps people learn to use the amount of energy they have while reducing their risk of post-exertional malaise or worsening their symptoms by exceeding their limits
• recognises that each person has a different and fluctuating energy limit and they are experts in judging their own limits”
page 28,29

The guideline also states that when considering energy and activity management, all the following factors need to be taken into account –

  • cognitive activity
  • mobility and other physical activity
  • ability to undertake activities of daily living
  • psychological, emotional and social demands, including family and sexual relationships
  • rest and relaxation (both quality and duration)
  • sleep quality and duration
  • effect of environmental factors, including sensory stimulation.

Pacing has sometimes veered towards encouraging incremental increases in activity based on the idea that deconditioning contributes to ME/CFS. However, studies using cardiopulmonary exercise testing (CPET) have demonstrated an impairment in aerobic metabolism in ME/CFS that is not seen in people who are deconditioned.(6)  The use of incremental increases in activity aiming to reduce deconditioning and increase tolerance, is therefore NOT recommended by the exercise scientists in this video. Their repeated CPET shows that when people with ME/CFS ‘push’ themselves or unknowingly keep trying to do too much, their symptoms increase and functional capacity decreases.

For decades, patients have been stigmatised and subjected to pressure to ‘do more’, or ‘try harder’, by society and the medical profession. Media headlines disseminated poor quality research, medical education for ME/CFS has been inaccurate or virtually non-existent and the old (2007) NICE Guideline advised graded exercise therapy (GET) as treatment. These circumstances have been harmful for patients and led to deteriorations in health, prolonged severe disability and social isolation.

In a very welcome turnaround in attitude, the new NICE guideline draft (2020) recognises that GET and treatments that exacerbate symptoms are harmful.

Resources and references.

Further advice about activity and energy management can be obtained from:

  1. Pacing. The ME Association download https://meassociation.org.uk/product/energy-management-and-pacing/
  2. Activity Intolerance and Pacing – ME/CFS and FM – Dr Lucinda Bateman. Bateman Horne Centre Educational Video Series. https://www.youtube.com/watch?v=HHYlvP4e7tU&t=1576s  Pacing starts at 28 mins
  3. ME/CFS and Fibromyalgia Self-help website by Bruce Campbell PhD and Dr Charles Lapp.  http://www.treatcfsfm.org/menu-Pacing-7.html
  4. Workwell Foundation: Resources and Research  https://workwellfoundation.org/resources/
  5. Energy conservation/envelope theory interventions. L Jason, M Brown, A Brown,  M Evans, S Flores, E Grant-Holler, M Sunnquist.  Pub. online: Jan 2013. https://www.tandfonline.com/doi/abs/10.1080/21641846.2012.733602
  6. Inability of myalgic encephalomyelitis/chronic fatigue syndrome patients to reproduce VO2 peak indicates functional impairment. Betsy A Keller, John Luke  Pryor, Ludovic Giloteaux. Journal of Translational Medicine. April 2014
  7. General information brochure on orthostatic intolerance and its treatment. https://www.dysautonomiainternational.org/pdf/RoweOIsummary.pdf
    Many patients suffer from orthostatic intolerance (OI). Treatment for OI can: “help control symptoms and allow a greater level of physical activity.” Prof Peter Rowe, Johns Hopkins University School of Medicine.
    If heart rate volatility in POTS can be reduced, heart rate monitoring can be more effective
Contributors:

• Dr Charles Shepherd
Medical advisor to the ME Association.

• Dr Luis Nacul
Co-Principal Investigator, CureME London School of Hygiene and Tropical Medicine
Medical Director Complex Chronic Diseases Program
British Columbia Women’s Hospital, Vancouver, Canada

• Dr Chris Snell – Former Chair of the Chronic Fatigue Syndrome Advisory Committee (CFSAC) to the US Secretary for Health
Workwell: Scientific Advisory Committee Chair

• Prof Mark VanNess
Professor and Co-Chair, Health Exercise and Sport Sciences, University of the Pacific, California.

• Prof Todd Davenport
Program Director Physical Therapy, University of the Pacific, Stockton. CA

UK Biobank Patients – Grace and ‘R’