Dialogues for a neglected illness: Activity and energy management – Pacing
The Dialogues for ME/CFS project (also known as Dialogues for a neglected illness) has produced a new video explaining pacing for health professionals.
“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]
“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]
The video features:
- Dr Charles Shepherd (GP)
- Dr Luis Nacul (biobank & researcher)
- Dr Chris Snell (expert in exercise physiology)
- Prof Mark VanNess (expert in exercise physiology)
- Prof Todd Davenport (expert in exercise physiology)
- 2 patients
From the Dialogues website:
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. 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.
- Introduction to ME/CFS
- Post-Exertional Malaise
- Severe & Very Severe ME / CFS
- Graded Exercise Therapy
- Patients’ Accounts – Symptoms