International Consensus Primer for Medical Practitioners (ICP) is a fit-for-purpose clinical guideline for ME. It guides medical practitioners and patients on how to make the diagnosis and design personalised management & treatment strategy.
When you suspect you are suffering from ME, I recommend learning and practising pacing even if you don’t have the official diagnosis yet. It is best to avoid potential harm. Early diagnosis and the right management could give you a better prognosis.
This advice is also extended to Post Viral Syndrome, such as the emerging Long Covid or Long Hauler. ME is classified by World Health Organisation as Post Viral Neurological Disease. Therefore the management strategy is relevant to those who experience Post Viral Syndrome. With my limited observation, recovery is possible for Post Viral Syndrome by adopting pacing during the acute stage.
Energy Budget/Bank (EBB)
In the management & treatment section of ICP, Energy Budget/Bank (EBB) introduces the concept of pacing, its objectives and self-help EBB strategies.
EBB Self-Help Strategies: education, functionality, and activities (quote from ICP)
Patients must always be in control of the pacing and duration of any activity. Encourage patients to:
- Pay attention to body signals & become alert to subtle clues of overexertion: It is essential that patients learn is to recognize early warning signs that they have exceeded energy boundaries.
SHS: Wear a heart rate monitor set approximately 5% below the anaerobic threshold. Stop when the beeper rings. Lie down and rest. Try to determine what activity, duration of activity or aggravator set off the beeper and detect subtle differences in how they feel – e.g. feet are cold, feel more confused, etc.
Other tools: • activity logs • charts • devices, such as wearing a step counter, or an Actigraph monitor can assist the patient in becoming attuned to subtle cues of over-exertion • Take temperature before and after activity: a drop in temperature indicates the patient has done too much.
A daily activity log should include duration and quality of sleep, functional level (scale of 0 – 10), activity, time and duration of activity, change in symptoms or severity, change in temperature, aggravators, etc. - Prioritize, prioritize, prioritize! The more limited the energy, the more important it is to prioritize which items are essential. Patients need to know their energy limits and the specific pacing required to do an activity in order to make knowledgeable decisions when choosing which activities are best for them.
- Stay active within their limitations and rest frequently: Alternating short activity and rest periods enables patients to do more in the long run. Always rest before and after an activity. Find an enjoyable activity.
- Set personal boundaries and activity limits. Learn to say “No” without guilt. Save energy for ADLs, etc.
- Adjust body position: (standing vs. sitting vs. lying down) Use joint protection devices as indicated.
- Optimize functionality: Depending on severity, some but not all patients in the chronic phase are able to incorporate some brief activities into their day to assist in maintaining and improving function. Monitor functional level (1-10) initially and on an ongoing basis. Start low – go slow. Use a heart rate monitor set a little below the anaerobic threshold to give activity biofeedback. Breathing exercises promote relaxation and strengthen respiratory muscles. Active stretching with breathing improves range of motion/flexibility.
These can be done either seated or supine. If and when able, add slight resistance (elastic bands), then take brief walks or swim. Use good body mechanics and ergonomics. Do not exceed energy boundaries – obey the heart rate monitor. Notes: Aerobic metabolism may be impaired. Do not exercise in pollution. - Develop alternate strategies for days when energy is low.
- Simplify routines & conserve energy e.g. cook enough for 2+ meals. Have a special place for items e.g. keys.
- Make environmental modifications, avoid multisensory overload, and use functional assistant devices.
- Avoid owing any energy account at the end of the day, if possible.
Other Pacing Strategies
Long term patients may be familiar with other pacing strategies, such as Energy Envelop Theory and Spoon Theory.
Shared concepts between EBB, Energy Envelop and Spoon Theory are that we must recognise one’s limitation and keep the energy spending within the limitation. It is a personal choice which concept to adopt. Each person has a different combination of symptoms, severity and priorities. Learning about own limitations is a trial and error process.
Pacing in Practice
Unlike prescribing medication and/or undergoing a medical procedure, pacing can be very confusing. It’s such vague management advice.
The first step is to determine your limitation or level of energy reserve. With this step, please be mindful not to overestimate your limitation/energy reserve. This common error will trap you into the vicious cycle of boom and bust because you are often not aware you have overexerted yourself until after you are in a ‘crash mode’.
You will be surprised by the energy demand on your body for just sustaining life. Most people without ME never have to think about the basal metabolic rate that accounts for about 50 to 80% of the daily calorie expenditure by individuals or the brain consumes about 20 % of the body’s energy in a resting state.
The next step is to allocate the energy reserve to various activities according to EBB Theory or your preferred theory.
Professor Donald Staines from NCNED (now retired) kindly provided the following advice on pacing and how much energy we should allocate to essential activities of daily living (ADL).
There is no precise rule and different recommendations should be made depending on the clinical assessment.
For the most severe disability, barely mobilisation of limbs at rest, no physical activity, is indicated.
For moderate disability, no more than a third (say 20-35%) of desired activity is indicated.
For mild disability stay within say 35-50% of desired activity.
While these measures are somewhat arbitrary, the point is to ensure people stay well within their limits at all times.
I found it is helpful to have a group of friends with a similar severity level to encourage each other to master the art of pacing. Some support groups are recommending the ME/CFS Fibromyalgia Self-Help course to learn about pacing.
The goal for pacing is to optimise your daily functionality and activity endurance without aggravating symptoms.
It will be repeated trial and error practice to master your own pacing strategy. So, please be kind to yourself and be patient.
Assistive Technology for Pacing
In recent years, Workwell Foundation leads the use of heart rate monitors for objective pacing based on the scientific discovery on impaired energy metabolism with patients with ME/CFS.
There are several Facebook groups and online forums to teach each other to pace with Heart Rate Monitor.
I remind you that the goal for pacing is to optimise your daily functionality and activity endurance without aggravating symptoms. Each patient is encouraged to find their own pacing strategy with a choice of method within your financial budget.
Disclaimer: This article is not intended for medical advice. In the absence of accessible and knowledgeable ME doctors, we recommend asking ME related questions at reputable forums, such as Phoenix Rising and Science for ME.