Terribly Sad News

It is with great sadness that we announce the death of a very special young woman with Very Severe ME,  the founder of Severe Myalgic Encephalomyelitis Understanding and Remembrance Day. We knew her as Lili. She was a deeply private person.

 The suffering she endured is beyond description and the sweetness of knowing her equally so. It is, we have to say, beyond heartbreaking, to know of even a hint of the agony Lili endured. Paralysis and extreme pain were only a part of the severe experience she had to bear every day: paralysis not just triggered by noise, but also by any effort at all, whether eating or speaking and often accompanied by unconsciousness.

We all, with Severe ME, owe a huge debt to her; it was her unique idea to propose the special day that we all now share on August 8th; it was also her suggestion that the day be recognised on Sophia Mirza's birthday, to remember those who have died with Severe ME and  those that are still living with it.  On that day, we hold them all in our hearts and light a candle in their remembrance, hoping that the  light shining with radiance,  brings awareness of the true nature of the neurological disease Myalgic Encephalomyelitis.

No one can truly know the depth of torment that such profound suffering without relief brings, yet Lili bore it all with dignity, gentleness and a focus on love and spirit.

We are touched beyond words that she would consider us her friends, despite the impossibility of communication in most moments.

We have our own candle alight, in her memory and hope that her life will always be remembered with kindness and thanksgiving. We are certain that her sweet presence has blessed the world in untold ways.

We hold her Mum also in our hearts at this time of great sadness and loss.

Remember us, remember them, remember Lili.

Linda Crowhurst


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