Today we had the very sad news that Anne Örtegren from Sweden had passed away.
We considered Anne a dear friend.
This news has come as a great shock.
Our condolences to Anne's family.
We never met Anne Örtegren in person. Yet we counted her as a true friend.
When we look at the correspondence with Anne we can see it had started in 2007 - a year after we were formed as a charity.
In all the correspondence that we had with Anne one always admired the resilience, the articulate nature of her commenting, her strength of character, her dedication and her determination to continue to battle this disease, to help others and to be there to make progress.
We instinctively trusted and liked Anne from the first time we communicated. She was a rock – somebody whose opinion we valued and whose help and support we greatly appreciated. And she was generous with her support.
Anne’s determination to help us and to encourage Swedish researchers to participate was a shining light for us.
Her help behind the scenes – she was never one to promote herself or seek the limelight for the sake of it – led to real collaborations between researchers who met at our Colloquiums.
She was an example to us all.
An unimaginable void has now appeared in ME advocacy – someone who is irreplaceable.
Though we knew Anne was suffering, and had been for such a long time, we were still communicating with her until very recently and had no knowledge of what was to transpire.
Her spirit was just an inspiration.
It is very difficult to read Anne’s last post (below).
Not just because of the suffering and pain and hopelessness that she describes – but because Anne was so articulate in describing her situation – never with self-pity, always displaying the same courage that she showed in her life.
We lost a friend today and it is hard to pick oneself up at this time.
A light has gone out and the world is all the darker for it.
When we lose a friend we lose a part of ourselves
Yet there are those who leave footprints in one's memory whom one will always remember.
Anne Örtegren is such a person.
Anne's facebook page is here https://www.facebook.com/anne.ortegren