Anne Örtegren
It is four years since news came of the passing of Anne Örtegren.
The lives of those who have passed away are placed in the memory of the living.
Years pass and the shock of the news of Anne's death may have ebbed away somewhat - yet the void remains,
covered by the memory of one woman whose courage, dignity and influence were evident always - and continue to inspire.
Nothingcan diminish the work of Anne - yet the thought remains of what
could have been, what should have been.
Anne was articulate, knowledgeable, courageous and positive.
In 2018, before her passing, Anne Örtegren made one final,
supreme effort to get the message through to people who needed to listen, to learn and to comprehend the severity of the situation for people with ME.
Her Final Post just needed to be listened to, to be understood, to act.
No other Awareness Day message need be made.
Reading Anne’s Last Post (see below) it may seem that she was recounting the situation that she found herself in and reasons for her course of action.
That, itself, would have been an enormous effort. Her Last Post is an articulate, reasoned and eloquent article which gives insight into the loss of this amazing person.
Yet, with Anne, this article was also likely to have been written to help so many others in the future - so typical of Anne’s selfless actions. Anne's selfless efforts involved helping others, looking to the future for progress with hope. Her example ought to be a constant reminder that we have to do the best that we can with what resources
And what of Anne’s message? Have things changed?
In her last post Anne wrote –
“
As you understand, this blog post has taken me many months to put together.
It is a long text to read too, I know.
But I felt it was important to write it and have it published to explain why I personally had to take this step, and hopefully illuminate why so many ME/CFS patients consider or commit suicide.
And most importantly: to elucidate that this circumstance can be changed!
But that will take devoted, resolute, real action from all of those responsible for the state of ME/CFS care, ME/CFS research and dissemination of information about the disease.
Sadly, this responsibility has been mishandled for decades.
To allow ME/CFS patients some hope on the horizon, key people in all countries must step up and act.
If you are a decision maker, here is what you urgently need to do:
You need to bring funding for biomedical ME/CFS research up so it’s on par with comparable diseases (as an example, in the US that would mean $188 million per year).
You need to make sure there are dedicated hospital care units for ME/CFS inpatients in every city around the world. You need to establish specialist biomedical care available to all ME/CFS patients; it should be as natural as RA patients having access to a rheumatologist or cancer patients to an oncologist. ”Covid allowed many of these to occur in an amazingly short period of time - for covid.
For ME little has changed, even in Anne's homeland of Sweden, despite continuing efforts by European ME Alliance Sweden (RME Sverige).
Anne ended with -
“You need to give ME/CFS patients a future.”
Still, ME patients have yet to be afforded that possibility.
