Story
In 2020 I became unwell. In 2021 I was diagnosed with ME/CFS.
In 2022 I explored restful and peaceful hobbies to optimise my life with ME/CFS.
Now it’s 2023 and the art I found in rest is something I want to share.
In sharing this, I desire to give back to the ME/CFS community that gave me the strength and confidence to try new things; try old things; and simply; to keep trying.
ME/CFS is underfunded, under-researched and misunderstood.
There’s no diagnostic test. There’s no cure.
As such, proceeds from selected pieces will be donated to ME/CFS charities and research centres. Information will be detailed on each piece.
Sending gentle hugs, good vibes and spoons,
Nicole Speirs
About ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome).
ME/CFS at its mildest means a person with ME/CFS has a battery that only charges to 50% of its original capacity.
ME/CFS is a complex and disabling disease that affects many parts of the body, including the brain, muscles, digestive, immune, respiratory and cardiac systems. It is estimated 1 in 100 Australians are living with ME/CFS. The severity of the condition can range from a 50% reduction in pre-onset activity to completely bed bound. 25% of people with ME/CFS are considered house bound or bed bound. 80% of people with ME/CFS are female but it can affect anyone of any age, sex or background.
The cause of ME/CFS is not conclusively known. Some people develop the condition following physical or emotional stress, such as a virus or a car accident, however others will experience sudden onset with seemingly no trigger.
Given the number of systems ME/CFS affects, it follows that the symptoms that can be experience are wide-reaching. The severity, pattern and relevance of these symptoms vary from case to case. One person with ME/CFS can experience it quite differently to another however the key symptom across cases is post-exertional malaise, being that symptoms get worse after physical or mental activity. Other common symptoms include; pain in muscles or joints, flu-like symptoms, sensitivity to noise or light, light-headedness, difficulty being upright, gastrointestinal issues, brain fog, memory issues, lack of concentration, irregular temperature control. These symptoms typically shift in occurrence and severity.
ME/CFS is a chronic illness. Studies show a “full recovery” is shown in between 5-10% of cases. There are limited treatment options with recent publications removing the historically recommended treatments such as graded exercise therapy and cognitive behavioural therapy. The available “treatment” aims to manage and minimise symptoms, through a patient-driven system that is called pacing which maps out exertion to avoid going over limits and triggering post-exertional malaise. Continuously exceeding capacity can worsen symptoms to a point of permanently increasing the severity of the person’s condition.