Treatment and Management of ME/CFS

There is, as yet, no universally successful treatment or cure for ME/CFS. At this stage, the major focus is on managing the illness.

There is some evidence that the earlier a positive diagnosis of ME/CFS is made and the earlier a management regime is adopted the greater the chance of improvement.

Establishing food malabsorptions, food intolerances and gut dysbiosis can be very helpful in managing symptoms.

Individualised management plans

The widely recommended approach to the treatment of ME/CFS is for a flexible, individualised illness management plan to be drawn up in relation to the person's particular symptoms, total illness burden, illness history and other personal circumstances.

This approach recognises that everyone is different, that symptoms fluctuate and the person with ME/CFS is the one who knows best their symptoms and activity capacity at any one time.

The need for the treating practitioner to recognise the biological pathophysiology of the illness, to respect the illness experience of the individual and for the person with ME/CFS to have autonomy concerning the complexity and pacing of activities has been emphasised. (1) (18)

It is important that the treating medical practitioner and person with ME/CFS work together in constructing a management plan.

Symptom and activity management and various self-help strategies can alleviate some symptoms and reduce the severity of post-exertional malaise, leading to some improvement in health and quality of life over time.

"The primary therapeutic goal of lifestyle adjustment - to determine that with which the patient can cope without aggravating her/his symptoms - remains of paramount importance, and should not be neglected in the search for remedies." (Carruthers et al, 2003)

There are no scientifically proven cures for everyone with ME/CFS. Any commercially available product or treatment promoted as a cure for ME/CFS should be treated with caution.

 

Pacing

The challenge of any chronic disease, including ME/CFS is to learn how to live within the limitations of that disease.

The challenge with ME/CFS is learning to live within an extremely delicate balance between energy supply and energy expenditure, and when this is out of balance symptoms will flare.

Pacing is a key strategy to keep ME/CFS symptoms manageable and to lead a consistent lifestyle. Pacing will assist a person to move towards a higher level of wellness. The alternative approach is the ‘push' and ‘crash' cycle, which is unhelpful, frustrating and can lead to further complications.

There is a tendency for people with ME/CFS to 'push' when they are feeling improved and to continue activities until symptoms worsen, by which time it is too late to prevent post-exertional malaise and a 'crash' from which recovery can be prolonged.

The view of many people with ME/CFS (and many experienced ME/CFS practitioners) is that, in order to keep going in the long term, it is important to pace oneself on a daily basis. This involves scheduling all activities with thought and flexibility, adopting energy-conserving practices, mixing activity with breaks and stopping activity (mental and physical) before serious symptom exacerbation occurs. There are usually signs that may be different from individual to individual, that indicate that one's limit is approaching. A person with ME/CFS learns these signs through the experience of living with ME/CFS.

A variation on pacing is 'pacing and switching', which involves changing activities to avoid tiring specific muscles. For example, this might include switching from reading before the eye muscles tire to talking and then switching back later (9).

Pacing recognises that even minimal physical or mental exertion may exacerbate symptoms; it accepts that the symptoms may reflect on-going disease; it accommodates the fluctuating nature of ME/CFS and allows maximum activity without worsening the illness.

Pacing is probably the most universally practised and successful ME/CFS coping mechanism. Pacing is not a cure but anecdotal evidence is that many people who adhere to pacing slowly improve.

There is also research and survey evidence that supports the effectiveness of pacing. For example, in a survey of CFIDS Association of America members, of the 820 who responded, 71% considered pacing helpful and none reported adverse affects (10). In a survey carried by Action for ME (UK) 89% of 2338 people with ME found pacing helpful and only 2% thought it made them worse (12). Research evidence supporting the effectiveness of pacing is summarised by psychologist Dr Ellen Goudsmit in (9).

Dr Ellen Goudsmit was the first person to describe pacing and has written a number of papers about it, such as (9) and an earlier paper (12), both of which have been used as source material for the above. Reference (9) provides a comprehensive coverage of pacing, including the scientific aspects of pacing and the differences between pacing and graded exercise.

Pacing is one of the most effective ways to help reduce symptoms of ME/CFS and Fibromyalgia including depression, anxiety, fatigue, and pain and can assist to improve quality of life. Establishing daily pacing routines within a person's individual energy envelope is critical. To improve your health status it is also important to stop using a push/crash cycle (CFIDS Self Help).

For more information on 'pacing', see Fact Sheet 4: Learning to 'pace'

More information:

Campbell, B (2009) 'Managing your Energy Envelope', CFIDS Chronicle, Winter 2009, pp. 28-31. [Full Article]

Jason L, et al (2008) 'The Energy Envelope Theory and myalgic encephalomyelitis/chronic fatigue syndrome', American Association of Occupational Health Nurses, vol. 56, no. 5, pp. 189-95.

Self-help courses designed to support people to manage their ME/CFS run in a number of states. Contact your local ME/CFS office for more information.