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]
Watch video (15 mins) & read transcript
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.
Other films from the project:
- Introduction to ME/CFS
- Post-Exertional Malaise
- Severe & Very Severe ME / CFS
- Graded Exercise Therapy
- Patients’ Accounts – Symptoms
“There are so many similarities between long Covid and ME/CFS it leads me to believe the underlying pathology is probably the same – except that long Covid is presenting as an epidemic, whereas ME/CFS has presented in a very sporadic way, and by no means in such large numbers in such a short space of time,” said Dr William Weir, a consultant in infectious diseases with a special interest in ME.
“It is crucial to acknowledge that not all long-Covid patients will behave like CFS,” said Dr Manoj Sivan, an associate clinical professor and consultant in rehabilitation medicine at the University of Leeds, who runs a long-Covid clinic in the city. He also sits on the BSRM’s executive committee. “Fatigue is multifactorial, and there are some patients with deconditioning and weakness who might benefit from GET,” he said.
Cognitive function disturbance is a frequently described symptom of myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS). In this study, the effects of a structured exercise programme (SEP) upon cognitive function in ME/CFS patients was examined.
The draft of the revised NICE guideline has been published on November 10th 2020. It will be open for consultation until December 22nd.
A hypothesis-based post-hoc analysis of the 
It has recently been reported that EBV induced gene 2 (EBI2) was upregulated in blood in a subset of ME/CFS patients. The purpose of this study was to determine whether the pattern of expression of early growth response (EGR) genes, important in EBV infection and which have also been found to be upregulated in blood of ME/CFS patients, paralleled
Psychiatrists proffer a hypothetical model of ME/CFS aetiology and continuance, that instructs doctors to view the illness as a syndrome perpetuated by psycho-social factors that sustain unexplained symptoms such as fatigue, pain and post-exertional malaise, rather than symptoms being related to biological disease processes. The psychiatric model theorises that patients’ symptoms are maintained by their maladaptive beliefs and behaviours, requiring psychotherapy.
