Remembering Anne Örtegren
Four years now since Anne Örtegren passed away.
Two years of covid-19 have done nothing to diminish
the work of Anne or the thought of what
could have been, what should have been.
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
we have, and keep
trying to make progress despite the hardships -
just as Anne did.
Yet four years on what progress have we seen -
what differences are there?
Have those who make or influence policies toward ME
learned anything, or put anything into action?
And what of Anne’s message? Have things changed?
Anne's words –
“ 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 has allowed all 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 not yet been afforded that possibility.