Living with ME/CFS

The best approach when learning to live with Myalgic Encephalomyelitis /Chronic Fatigue Syndrome is to implement regular rest and to prioritise what you spend your limited, faulty energy on – we call this ‘pacing’. This is understood to give you the best chance for improving. 

​

The aim of pacing is to minimise Post-Exertional Malaise (PEM) from occurring, to stabilise symptoms, and to avoid getting worse. 

It will take some time to explore:

•    what your activity limits are, 
•    what activities you can manage and what you can’t, and
•    what approaches help and what don’t. 

​

Your energy and wellness levels may change over time, so what is manageable will change too. 

​

Unfortunately, there are no treatments that are proven to be completely effective for ME/CFS yet, and not everyone finds benefit from the same approaches. A silver lining of the COVID-19 pandemic is that there is more research underway into post-viral illness and this should bring insight and treatments for ME/CFS also. 

​

Despite the lack of evidence-based treatments, there are some supplements, medications, aids, and lifestyle changes available that may provide some relief from symptoms or improve your quality of life in other ways.

We have provided information about what expert clinicians suggest and what the ME/CFS community have found helpful in the sections below and will add to this over time.

​

Talk to one of our Registered Nurses and/or find a doctor you trust to work with you. They may be able to help with pain, sleep problems and orthostatic intolerance (problems with being upright) and managing food sensitivities, as well as arrangements for home care, financial support, and counselling.

​

Please be aware that a lot of content online or in books is not evidence-based. More research is needed to fully understand the causes and best treatments for ME/CFS.