Kati
Patient in training
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This is a very interesting post backed by freedom of information requests. Here is the introduction:
Much more at the link: http://occupyme.net/2017/06/27/nih-attitudes-affect-policy-a-story-in-two-parts/
Disclosure: I am mad as hell that all of us are still in limbo. We have a right to be angry. There is a need for reconciliation.
The current situation for ME research at NIH is still a problem, despite the fact that the RFAs will increase spending on ME by a significant percentage. I say this based on two things: what the ME field needs to catalyze research and how NIH attitudes about ME are interfering with that. There is a toxic stereotype in play: that people with ME are responsible for the current situation. I believe that as long as that stereotype is held by people in positions of power, we face a slow and uphill battle to obtain the research funding that is so desperately needed.
Part One: You Have Disappointed Me
In November 2016, Carol Head and Dr. Zaher Nahle of the Solve ME/CFS Initiative secured a brief meeting with NIH Director Dr. Francis Collins. They reported that it was a positive discussion, but emails I obtained through a Freedom of Information Act request reveal NIH’s intention to manipulate the encounter.
Much more at the link: http://occupyme.net/2017/06/27/nih-attitudes-affect-policy-a-story-in-two-parts/
Disclosure: I am mad as hell that all of us are still in limbo. We have a right to be angry. There is a need for reconciliation.