Archive for October 2014
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?”
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There are most certainly people who don’t want the ME community reading these documents. Well Done to Jeanette Burmeister for her tenacity and intelligence for obtaining these and thank you to her for her hard work fighting for everyone in this battle weary group of very sick people.
I am downloading these as I type…I can imagine them to be VERY interesting reading but perhaps held for a time when my head isn’t already set to explode for other reasons.
Earlier in the year, I filed a FOIA request with HHS for documents relating to the ME/CFS P2P. Although I received some fairly unremarkable and some heavily redacted documents a while ago, I received the vast majority of documents, which also happen to be more interesting, only recently. In fact, those documents were sent to me within days of my winning my FOIA lawsuit relating to the IOM. Quite a coincidence, wouldn’t you say?
Once again, HHS violated FOIA by failing to make the required determination within the statutory 20 business days. In fact, they took more than 8 months! I could have brought a lawsuit based on that violation alone. I did not. However, I have now filed an administrative appeal with HHS challenging the adequacy of the document search and production.
In the meantime, I will make the documents produced to me available on my blog (as my health permits; I…
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