Johanna Kaiser wint er geen doekjes om in haar telefoonconversatie met Dr Koroshetz,
die, als directeur van het National Institute of Neurological Disorders and Stroke (NIH), (mede)
verantwoordelijk is voor het beleid m.b.t. ME(CVS), inclusief het toewijzen van onderzoeksbudgetten.
PWME to NIH: People with me are being murdered by neglect
February 3, 2017
By #ME Action
An American with ME had strong words for the National Institute of Health (NIH):
You have stolen 40 years of my life.
Johanna Kaiser gave a brave testimony
bout the neglect of people with ME
during the February 1, 2017 phone meeting with the NIH
in which institute leaders answered questions
about the planned ME research centers and data center.
We have been told that
you [NIH] need more investigators [to apply for grants].
Weíve been told
by investigators how their grant applications have been turned down.
These are not third-rate people.
These are world-renowned researchers.
So patients are caught in between what NIH says, and
what these world-renowned Nobel Laureates and
members of the National Academy of Sciences are telling us.
You've really gotta quit this and get moving,
because this is murder by neglect!
I don't mean to insult you,
but you've stolen 40 years of my life from me.
Well do something, please change it for God's sake.
I can't go on like this and neither can most of us.
You give us words, but not action.
And the increase in funding is just a kick in the face.