08/08/2025
A Moment of Silence for Severe ME/CFS Patients by Whitney Dafoe
Today we honor the sickest among us. The ones who have been least lucky among some of the least lucky people on earth. It is only bad luck that lands us with ME/CFS, none of us did anything to deserve this or to cause this. And no one with severe ME/CFS did anything to wind up sicker than anyone else.
♿ 𝘈𝘤𝘤𝘦𝘴𝘴𝘪𝘣𝘪𝘭𝘪𝘵𝘺: 𝘓𝘪𝘴𝘵𝘦𝘯 𝘵𝘰 𝘵𝘩𝘪𝘴 𝘱𝘪𝘦𝘤𝘦 𝘳𝘦𝘢𝘥 𝘢𝘭𝘰𝘶𝘥:
https://ow.ly/pI0K50WBCJu
The person most dear to me in this world has gone from moderate to extremely severe this spring and I weep for her everyday. Because I know exactly what she is going through - it is absolute hell on earth - and I am completely helpless to help her or stop it. All I can do is be here for her so she is not alone.
People living with severe ME/CFS lose every single thing that defines being human - every single one - and experience symptoms that no human should have to endure. Unworldly symptoms that you could not imagine in your worst nightmare - until you experience it. Dehumanizing, incapacitating, uncontrollable, reality bending. It is torture for every single second of existence worse than anything most humans on earth will ever experience.
And these symptoms are layered with a lack of acknowledgement from the world that leaves these patients in the shadows of society as if they do not even exist anymore. Or worse, lost on their own, abandoned and destined to die alone on the streets. See my post "The True Horror of ME/CFS" where I walk you through the logical, factual steps that lead you to the hidden reality of what many severe ME/CFS patients face - dying alone on the streets.
https://ow.ly/yW9f50WBCJv
Think about that combination. Living in a world worse than Hell, and being completely abandoned by society with no help and a feeling of no hope to ever get better, nothing to look forward to but endless agony and rejection and loss. Because when you are in that pit of severe ME/CFS, you have no contact with anyone or any way to know about research progress or anything hopeful. You are isolated and alone with nothing but your mind and punishing, relentless, never ending suffering.
When you think about this, it is not a surprise that so many severe ME/CFS patients take their own lives. But it is absolutely, unconscionably tragic and must end with real care, real treatments, and real, tangible hope.
Anyone reading this is better off than those who are most severe and we should all share the horrifying reality of our lives - whatever stage of ME/CFS we live with - through writing and photographs and anything else that makes sense to us. And hope that someday someone listens. But until the world turns an ear, an eye or hell, I’ll take a fu***ng toe, all we can do today is have compassion; Offer our prayers and hopes and wishes. And take a deep bow of respect to those clinging onto this life desperately, in absolute agony emotionally, physically and spiritually.
Today let’s take a moment of silence to honor severe ME/CFS patients. Really. Let’s all take a moment - even just 1 minute - right now and just hold still in silence with our eyes closed like many severe ME/CFS patients live all day everyday - and think of them. You might not think this makes a difference, but it does, and I am asking you - all of you - please - take a moment for the least lucky amongst us.
To all those living in silence and darkness. Today we take a moment in silence and darkness to honor your courage, your bravery, your resilience, your strength, and we acknowledge your profound suffering, agony and loss.
We are here, we are praying for you and we understand. And we are not going away. We are right there beside you. We are all in this together and stand united until the backs of society are turned towards us and the light of science and care and awareness finally shines.
Love,
Whitney 💙
The Network Bateman Horne Center Solve MECFS Initiative
