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 housebound or bedbound and the least visible in research, support, education, and awareness.
The lived experience
Living or caring for someone with severe ME/CFS comes with its own challanges that those with less severe ME/CFS do not face. Sharing their experience living with severe ME/CFS, we feature two videos about what it’s like living with severe ME/CFS, as well as ways they have found to add meaning and enjoyment to their lives, from their beds.
Simone Eyssens, a person living with severe ME/CFS, made a rare presentation to those at Parliament House in March 2024 via video conference/zoom. Simone is bedbound, so is unable to attend such events. As she highlighted, it is rare to be given an opportunity such as the roundtable to speak about her life and experience.
Simone’s words were real and deeply moving, which is why we wish to share them with you today.
Stacey Hollings, lives with ME/CFS, EDS and POTS, which have dramatically changed her life over the past few years. Stacey shares her journey on her Instagram page @living.life.with.m.e in the hopes of helping to spread awareness of the conditions. Stacey has recorded a small portion of her experience for Emerge Australia to share.
If you would like to know more about living with severe ME/CFS, please click through to the following links:
- Severe ME Day 2023: when Emerge Australia shared messages of those living with severe ME/CFS, and their carers, who are often the most invisible. You can view the video here
- 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
Why is Severe ME Day important?
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.
August 8 was chosen for Severe ME Day in memory of Sophia Mirza, who lived with very severe ME/CFS and was the first person in the UK to have CFS listed as a cause of death. The current coronial inquest into the death of Maeve Boothby-O’Neill in 2021 is a stark reminder of both the seriousness of severe ME/CFS and the need for appropriate medical care.
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
- Slow
- Misinformed
- Disability
- Awareness
- Past
- Present
- Future
- Research
- NDIS
- SAFE medical care
- Overwhelming
- Scared
- Discrimination
- Care
- Family
- Friends
- Grief
- Loss
- Acceptance
- Still
- Stigma
- Confusion
