I am continuing to release documents (this time, emails only) I received from HHS in response to my P2P FOIA request.
A lot of these email exchanges will show clearly the disdain, condescension and hostility towards our community.
They also demonstrate the fact that HHS is not one bit interested in our comments or even questions. HHS blew off legitimate patient concerns by replying with canned talking points—“TPs”—and when patients asked for meaningful clarification (since their questions had not been answered), Susan Maier decided that there was “[n]o need to answer them directly.” Filing those patient emails away would suffice (page 72). So much for the theory that our input will be heard.
Quoting Anne Rancourt of NIH (page 78): “We also recently had a FOIA request on CFS.” What do you think this means? Could that be NIH speak for “Be careful what you put into writing?”
Here is today’s batch.
Thank you. You are such an inspiration and a solid warrior for the cause.
Wow, that clarifies a few things!
Thank you for sharing this information, Jeannette. It is mind-blowing, but it confirms much of what we thought all along.
Reblogged this on Carole… and commented:
Thank you for your continued effort on behalf of all ME/CFS patients. I hope you are able to get some rest.
One can only wonder what they were saying in all the redacted conversations if they allowed us to see how they stonewalled direct questions from patients and advocates with toilet paper (isn’t that what TP stands for?) answers meant only to evade the questions and openly said there was no need to respond to us directly. Interesting to see they did take note of David Tuller’s piece which revealed the pitiful amount spent to research this.
Besides the blow-off with the canned “talking points”, it was interesting to note that they monitor and seem concerned about the Blogosphere, Twitter and media.
Keep up the good fight! We need to reform the reform! Everyone needs to stand up against the unregulated, unaccountable, thieving, liars, that the Government/NIH/HHS/IOM/Chamber of Commerence/Medical Cartel has become on our backs!
Thank you for all of your hard effort on behalf of ME and it’s sufferers! I do not know how you find the energy to do it!
Jeannette, I’m only half-way through reading all the emails, and it is quite the eye-opener!! Thank you for all your hard work and perseverance. Know that you are performing a great service for all.
Jeannette, you are performing a great service for all ME sufferers. I’m only half-way through reading the emails, and it’s exhausting. What an eye-opener! I don’t know how you do it.
These pages contain enough raw material to keep twitterers busy 24/7, if only we were well enough. Thanks, once again, Jeanette, for this major accomplishment.
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Here we have another interesting e-mail revealed (dropbox Batch #3–page 49).
This e-mail is from Suzanne Vernon
regarding an e-mail
TO Ms. Suzanne Vernon
references information that Suzanne disclosed to Jennie Spotila
that Ms. Vernon feels she shouldn’t have.
AND — What to do to mitigate that ?!!!!!