Thread by @SabineHermisson

Living with very severe #mecf 1: Silence

Before Mila became very severely ill with #mecfs, playing the cello was a major part of her life and identity. I loved listening to her playing Bach’s suites while going about my work – until she became too weak so sit upright.
1/8

Today, due to her extreme sensitivity to sound, our house is very quiet. A sign at the door asks visitors to enter softly without ringing the doorbell. We never have more than a handful of guests, no loud talking or laughing, no singing or playing the cello or violin.
2/8

In Mila’s room, total silence prevails. She can no longer speak due to extreme weakness. But also listening to just a few words is too exhausting and causes PEM. Some communication can be avoided by adhering to a strict routine. Plus, she uses finger signs that she developed.
3/8

But often she cannot communicate what she desperately needs to convey: thoughts and feelings about her situation, fears and hopes for the future, essential needs. Then she tries and we don’t understand - and have to leave her room after a few minutes, to her and our despair.
4/8

Nothing is more isolating than a complete lack of communication. On many days, we cannot speak even a single word. We cannot let her be part of the outside world. And we cannot offer any words of consolation and hope.
5/8

But then: What hope would we have to offer? A cure in five years? In ten years? How can she even survive in complete silence, darkness, and isolation for another five or ten years?
6/8

Yet, the silence that is most disturbing is the booming silence of all those agencies and officials who have the responsibility and power to finally implement the biomedical research and clinical trials for #mecfs that have been so utterly neglected in the past 50 years.
7/8

Thus, I am deeply grateful to all patients, scientists, medical doctors, politicians, journalists, artists, and organizations who use whatever voice they have to raise awareness for #mecfs and the neglect that patients suffer from.
8/8