What is Severe ME day?
Severe ME Day is recognised globally as a day to acknowledge the strength and spirit of the estimated 25% of individuals living with ME/CFS who have severe or very severe symptoms. These individuals are often housebound or bedbound and the least visible in research, support, education, and awareness.
In recognition of Severe ME Day 2023, Emerge Australia would like to share messages of those living with severe ME/CFS, and their carers, who are often the most invisible. We are so grateful to the ME/CFS community for assisting us with acknowledging Severe ME Day.
To acknowledge and remember the many in our community, including our much loved and courageous young people, who have tragically passed away having lost their battle with Severe ME/CFS.
Why is Severe ME Day important?
Severe ME Day is acknowledging the strength and spirit of those living with severe ME/CFS, who have severe or very severe symptoms. These people are often housebound or bedbound and the least visible in research, support, education, and awareness.
Too often we hear of those who once thrived, only to be impacted by severe ME/CFS, leaving them without enough energy to meet their basic needs. This disease has a devastating effect on individuals’ present and future life. Severe ME/CFS is often unheard and unseen.
Overwhelming isolation, stillness, gravity pulling, stigma, confusion, disbelief, no available safe care, no access to disability support, too sick to contribute to research and so much missed information. Emerge Australia acknowledges you, there is so much that needs to be done to create a better future for those with severe ME/CFS.
Invisibility has many shapes and forms. For those with severe ME/CFS, they are often invisible to the outside world, because they are too unwell to be in the community, at family events, and for some, too unwell to receive medical care. Emerge Australia acknowledges the gaps in the healthcare system and are working towards uniting and training our health care professionals.
Words we regularly hear from our community about Severe ME
- Devastation
- Impact
- Lost life
- Isolation
- Connection
- Meaning
- Past
- Present
- Future
- Research
- NDIS
- SAFE medical care
- Care, Family, Friends
- Grief, Loss, Acceptance
- Still, Slow, Overwhelming, Stigma
- Confusion, Misinformed, Scared
- Awareness, Disability, Discrimination
For more information on living with severe ME/CFS, including Anil van der Zee’s personal story and Ricky Buchanan Tips & Tricks please click here
If you’re a carer of someone who lives with severe ME/CFS you might find some helpful resources here
