The quality of life for people with ME/CFS can be improved by:
reducing the impact of symptoms; and making adaptations to activities of daily life.
......those patients who are given a period of enforced rest from the onset have the best prognosis.
Dr A M Ramsay, Royal Free Hospital, 1986
While there is no approved treatment for ME/CFS there is a great deal that can be done to treat specific symptoms and to help manage activities of daily life.
- The overall impact of ME/CFS on the body can be reduced by addressing those symptoms for which there are effective treatments.
- It will be helpful to focus initially on symptoms that have a wide-spread impact, such as sleep, pain, and gut health.
- The underlying abnormal physiology of ME/CFS must be considered before introducing therapies that are effective in other conditions.
For example, in some chronic conditions, exercise has been proven to be beneficial. Exercise has not been shown to improve the health of people with ME/CFS. In fact, because the cardinal symptom of ME/CFS involves worsening health in response to effort, exercise can cause harm.
In ME/CFS, the body has a finite amount of energy available each day.
Pacing is the single most helpful management strategy for ME/CFS as it is designed to avoid post-exertional malaise (PEM). Activity must stop before energy is depleted and symptoms begin to increase.
When people with ME/CFS push past their available energy, a loss in functional capacity is inevitable.
Some patients find objective feedback from devices like heart rate monitors to be a useful aid to avoiding harm from overexertion.
- People with ME/CFS may find that they need to spend most of their time resting, with short periods of physical or cognitive activity.
- The way in which people rest will be different, depending on how severe their illness is and whether or not they have entered a period of PEM. For someone whose illness is mild, lying quietly listening to gentle music may be restful, while someone who is severe will need a silent and darkened room.
- Social interaction requires energy. Friends and family can help by understanding that the ways in which people with ME/CFS are able to communicate and connect will change.
- People often find it supportive to interact with others in the ME/CFS community who understand their circumstances.
- Clinicians can assist people with ME/CFS by facilitating access to available services in health, education, welfare and disability sectors.
- Adjusting to any chronic, debilitating illness increases the risk of developing depression and anxiety. Psychological support may assist both people with ME/CFS and those who care for them.
ME/CFS is an illness that requires a paradigm shift in thinking.
PEM is unique to ME/CFS. Every action, treatment and environmental stimulus must be considered through the lens of energy conservation and impact on symptoms.
Introduce one change at a time so the impact can be monitored.
As ME/CFS is a fluctuating illness, periods of improvement or worsening health should be anticipated. Changes in the short term may not reflect a response to treatment.
Start with a low dose of medications, since the usual doses are often poorly tolerated.
Clinical guidance in use in Australia
The ME/CFS Advisory Committee Report to the NHMRC Chief Executive Officer (30 April 2019) recommends the use of the Canadian Consensus Criteria (CCC), International Consensus Criteria (ICC) and the Paediatric Primer.
South Australian clinical guidelines (2004) are based on the CCC.
Additionally, an extensive lists of tests and treatments for ME/CFS and common co-morbid conditions are available from the U.S. ME/CFS Clinician Coalition.
Last edited: 28 April, 2023