How is it treated?
Mental and physical activity pacing (limiting type and duration and including rest periods throughout), avoiding stressors, and using supplements or medications to gain some control of the symptoms are the only treatments available at this time. Counselling (sometimes erroneously referred to as “cognitive behaviour therapy”) may help a person adjust to and effectively cope with the new limitations of the disease.
There is currently no medicine that impacts the cause of the symptoms. There is no single universally approved treatment for ME/CFS. The CDC and other agencies acknowledge treating the disease is complicated by the unknown cause. Because many ME/CFS patients’ symptoms vary over time, specialists often suggest treatments that are highly personalised and change treatment protocols frequently.
Source: Open Medicine Foundation
The role of physiotherapy in M.E.
From Physios for M.E.:
The role of activity scheduling
By Prof Romy Parker
Activity scheduling is adopted in order to provide people living with ME a daily framework within which to plan daily activities without suffering a flare-up of symptoms. ME sufferers have often become disempowered through their illness and struggle to anticipate energy needs throughout the day.
Sufferers notice that their symptoms become worse after periods of activity and consequently they often find themselves in an over activity/under activity cycle in which they gradually become more disabled. Activity scheduling is a tool used by the therapist and patient to jointly plan daily activities with the objective of stabilising symptom flare-ups. When scheduling activities in ME it is essential that periods of rest and activity are balanced. In the early stages of rehabilitation the initial approach is cautious with double the amount of rest scheduled for each bout of activity (e.g. 30 minutes getting up, dressing and having breakfast, followed by 60 minutes of rest). The amount of rest may be increased beyond this if the patient is very ill and is unable to stabilise with repeated flare-ups.
Once the sufferer has stabilised and is experiencing fewer symptom flare-ups (often referred to as ‘crashes’) periods of rest can be gradually decreased to a 1:1 ratio with activities. A daily timetable is a useful tool in developing an activity schedule and allows therapist and patient to clearly identify types of activity which may contribute to flare-ups. These may include physically demanding tasks, emotionally demanding activities and cognitively demanding activities. The type of rest used requires consideration. Recognising that central nervous dysfunction and in particular, autonomic dysfunction plays a role in the condition, supine rest must be scheduled. Resting in supine minimises the impact of orthostatic intolerance and allows full recovery from demanding activities.
However, every rest period scheduled does not need to be in supine. Variation between resting in supine, sleeping in supine, sitting, sitting reading, sitting listening to music, sitting at a computer etc. can be employed and is beneficial as variation maximises the benefit of rest but also minimises the negative impact rest may have on social participation and function.
From Health Rising:
- Long-Term Saline Use Improves Cardiovascular Functioning in ME/CFS: A Workwell Case Report
- Regular Use of Saline May Reduce Symptoms, Boost Energy in POTS (and ME/CFS?)
- Oral Rehydration Solution More Effective than Saline IV at Improving Orthostatic Intolerance