In the past, ME/CFS has been characterised as a syndrome of medically unexplained fatigue responsive to talk therapy and graded exercise. But scientific advances are revealing a complex, multisystem disease involving neurological, immunological, autonomic, and energy metabolism impairments. There is a critical need for a different approach to management of the disease and accompanying comorbidities.
While there are no treatments approved specifically for ME/CFS, a number of different pharmacological and non-pharmacological treatments can help reduce the severity of symptoms.
Some examples of commonly used medications include low-dose naltrexone, duloxetine, gabapentin, or pregabalin for pain; fludrocortisone, midodrine, pyridostigmine, low dose beta-blockers and/or intravenous hydration for orthostatic intolerance; occasional use of modafinil, methylphenidate, or dexedrine for cognitive or fatigue issues; and trazodone, clonazepam, tricyclic antidepressants, or suvorexant for sleep.
Drugs should be started at low doses and increased slowly to avoid triggering drug sensitivities common in ME/CFS. Some patients react VERY badly to medicine, be extremely cautious.
Non-pharmacological approaches include:
salt and fluid loading and compression stockings for those with orthostatic problems; cognitive aids (e.g. writing notes to assist memory; keeping a calendar, notebook and calculator at hand; and always placing important items in the same place); ear plugs, eye masks and sunglasses for those with light and sound sensitivities; sleep hygiene measures; and avoidance of problematic foods and medication.
Note: In addition to these basic treatments, some disease experts are evaluating the selective use of antivirals and immune modulators in ME/CFS and have seen evidence of efficacy in some patients.
Treat Comorbid Conditions
As mentioned under Co-morbidities a number of conditions may be comorbid with ME/CFS. Treating these comorbid conditions using the appropriate standard of care will not cure ME/CFS but it may improve the patient’s quality of life.
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.
NOTE: Some patients are too severely ill to even do activity scheduling. The patient’s state of health will guide him/her/they as to what can be done. Caution is always the best strategy.
A DO NO HARM APPROACH is essential.