When I first heard this song, I couldn’t believe just how much I resonated with it, and how much I needed to hear it in that moment. It truly moved me.
To help raise awareness, I wanted to share this song, some of my story and important information on Myalgic Encephalomyelitis (ME/CFS), a poorly understood condition that has drastically changed my life. There is so much I could say about it, but I feel like this expresses it as best I know how, and I really appreciate you taking a moment to watch.
ME/CFS is not necessarily a terminal condition, however, people are dying from it due to lack of proper support and effective medical education, with incorrect treatments still being pushed despite guidelines being directly against them.
This is why awareness matters.
This is the first time I’ve sung since my condition deteriorated in January. As I am unable to effectively warm up and sing in the same day, and I don’t have the stamina to maintain my higher register, I transposed this song to a lower key to make it more accessible without practice. I chose not to focus on making it perfect, but rather sing to authentically express everything I feel.
Music has always been the way I experience the world so I am glad to share this with you. This post is public so please feel welcome to share to spread awareness.
Originally performed by Billie Eilish
Words and Music by
Billie O’Connell and Finneas O’Connell
Video also on YouTube and linked in bio
#goblueformecfs #goblueformecfs2024 #millionsmissing #millionsmissingvoice #millionsmissingaustralia #myalgicencephalomyelitis #myalgicencephalomyelitisawareness #myalgicencephalomyelitiswarrior #mecfs #chronicfatiguesyndrome #mecfsawareness #mecfswarrior #chronicfatigue #severeme #longcovid #worldmeday #allyforme #whatwasimadefor #whatwasimadeforcover #billieeilish #singer #disabledsinger
a month agow33_pea2406
What a beautiful voice. Thank you for sharing your story and your pictures of before. I have moderate ME and it’s devastating 🤍💙
a month agohayley.0608
Absolutely broke me tonight this. I have moderate verging on severe ME and it’s crushing to know what I won’t be able to experience. I’m heading into my 40s next year and hoped they would be the best years yet 😢
3 months agoemilydanielacalderon
I suffered violence and very traumatic events since childhood. I suffer from irritable bowel syndrome, urinary retention, migraines, allergies, chronic post-traumatic stress disorder (CPTSD), muscle pain and tension, and extreme fatigue. I only get up to eat something for two hours, then I have to lie flat in the dark, or I get a massive migraine that leaves me unable to get out of bed for a week or more. Exercise or any physical, emotional, or mental exertion triggers these migraines and fatigue even faster. My doctor doesn't think it's PEM or encephalomyelitis. I reached this state slowly and gradually, starting with the fatigue in 2024 when I noticed it was very difficult to get up in the morning. One of the most depressing things is not being able to get a diagnosis because no one believes me when I say I'm very ill and alone.
3 months agogerberapower
Thanks for sharing and raising awarwness. What a beautiful voice you have. Got ME after a virus, then Long Covid following Covid virus. 💙🫂
4 months agokristel.fae.artist
Oh my goodness I had the same reaction to this song when it came out! It resonates so much! Thank you 🙏 (Fellow ME’r who’s mostly housebound)
6 months agoh.m.m.246
Perfectly described and beautiful voice. I saw your comment on someone else’s post that you are in a wheelchair. I wanted to see why you’re in a wheelchair so I went to your page. Surprised to see that you have ME which I hardly see anyone posting about. I too have suffered with ME for almost 40 years. Thank you so much for explaining to people what we deal with. God bless you. ❤️
a year agogordonmedicalforum
Awareness like this matters deeply. So many are still navigating ME/CFS without adequate support, voices like yours help bring both visibility and hope.
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