De brief die Brian Vastag op de derde "verjaardag" van zijn ziekte aan Francis Collins (NIH) schreef,
zegt eigenlijk alles over de "armoedige" wijze waarop overheden tot op heden omgaan met ME.
Iím disabled. Can NIH spare a few dimes?
By Brian Vastag
Three years ago, a sudden fever struck me on a blue-sky Wisconsin morning.
I've been sick ever since.
On my third "illiversary", I presented an opportunity to Francis Collins, the head of the NIH:
Dear Dr. Collins,
At 43, my productive life may well be over.
There's a good chance I have hiked my last trail.
The nation's coffers lose some $25,000 in tax revenue each year I remain disabled,
and I will soon know if Social Security Disability Insurance will start coming my way.
I don't enjoy being a drain on society,
and neither do any of the other ME patients I know.
And with the ever-growing research interest in ME,
I have hope that someday I'll be able to
stand for more than a few minutes, walk for more than a block or two,
maybe even resume my career.
(It took me four days, with frequent breaks, to write this letter --
that's a bit slow for newspaper work.)
The causes of ME will eventually be discovered,
treatments will be found and patients will enjoy long-term remissions.
As the leader of our nation's medical research enterprise,
you have a decision to make:
Do you want the NIH to be part of these solutions,
or will the nation's medical research agency continue to be part of the problem?
A day after this post initially appeared,
Collins replied via e-mail but asked that his response be kept private. -- BV