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 would have started this process sooner had my health allowed me to do so.). The two batches published today consist of the earlier-produced documents. I will publish the documents that have more meat as soon as I am able, so make sure to check back for more interesting revelations.
The first batch can be found here and contains the following documents:
Page1: Agenda for Working Group Planning Meeting
Page 3: List of Members of Working Group Planning Meeting
Page 7: Email exchange re attendance of Suzanne Vernon at Working Group Meeting
Page 10: Email to Working Group Members re Furlough
Page 11: Email exchange re Participation of Ben Barres in Working Group
Page 13: Email exchange re Participation of Ian Lipkin in Working Group
Page 15: P2P Agenda Example
Page 18: Panelist Nomination Form
Page 22: Key Questions
Page 23: Topic Refinement Content Guidance Document
Page: 31: Table comparing Fukuda, Canadian and Revised Canadian
Page 39: P2P Workshop Draft Agenda
Page 43: PowerPoint Presentation Susan Maier, NIH, on ME/CFS P2P
Page 56: PowerPoint Presentation, NIH, on P2P
Page 70: PowerPoint Presentation M.E. Beth Smith and Marian McDonach, Pacific Northwest Evidence-based Practice Center Oregon Health and Science University, Portland, on Diagnosis and Treatment of ME/CFS
Page 90: PowerPoint Presentation, Wilma Peterman Cross, ODP, for P2P Working Group meeting January 6, 2014
Page 98: PowerPoint Presentation Jody Engel, NIH, on P2P
The second batch can be found here and contains the following documents:
Page 1: FAQs about the EbMW Program for EPC Kickoff Call, April 2013
Page 8: Proposal for ME/CFS EbMW
Page 12:Email exchange with Suzanne Vernon re Patient Advocates
Page 16: Request for Task Order, Evidence-based Practice Center
Page 36: Task Order, Oregon Health & Science University
Page 49: Topic Refinement Document Part 4: Development of the Provisional KQs, PICOTS and AF Provisional Key Questions) (entirely redacted)
Page 56: Suggested Technical Expert Panel Members (entirely redacted)
Page 58: Topic Refinement Content Guidance Document Part 1: Summary of Topic Development and Development of Preliminary Scope (KQ, PICOTS and Analytic Framework) (entirely redacted)
Page 66: Evidence-based Practice Center, Project Staffing Plan (mostly redacted)
Page 68: AHRQ-OHSU contract
Page 121: Request for Task Order (basically entirely redacted)
Thoughts About M.E. 
Thank you x
Reblogged this on Short Blogs for the Distracted……… and commented:
I suppose the burning question .. and it has been for a very long time is ” why do they treat us so badly ” what is being covered up I wonder ? Great blog by Jeannette
Thank you for sharing this with us, Jeannette!
Thank you so much for sharing, Jeannette!
A monumental achievement and a grateful patient community. Thank you for your sacrifices, Jeannette.
Reblogged this on Carole… and commented:
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.
well done! thank you!
Well done, Jeannette–most interesting and revealing reading–and curious and telling as to blocking out some of the information!! More to read through. Scandalous — twenty days vs. eight MONTHS for the info on your FOIA to ‘appear’ — and after winning your FOIA lawsuit–a great win!!
Wellll, thank you as always for your hard work . . . Take good care of your health ‘as best you can’ . . . as best as any of us can.
Thank you.
Wow, thanks for doing this. There’s some interesting emails in there. Some folks at the Phoenix Rising forum have already dissected these files.
http://www.foiadvocates.com/exemptions.html
However, since only a clearly unwarranted invasion of privacy is a basis for withholding, there is a perceptible tilt in favor of disclosure in the exemption. “In the Act generally, and particularly under Exemption (6), there is a strong presumption in favor of disclosure.” Local 598 v. Department of Army Corps of Engineers, 841 F.2d 1459, 1463 (9th. Cir. 1988) (emphasis added). In that case, the Ninth Circuit reviewed the context of applicable Exemption 6 case law:
The Freedom of Information Act embodies a strong policy of disclosure and places a duty to disclose on federal agencies. As the district court recognized, ‘disclosure, not secrecy, is the dominant objective of the Act.’ Department of the Air Force v. Rose, 425 U.S. 352, 361, 96 S.Ct. 1592, 1599, 48 L.Ed.2d 11 (1976). ‘As a final and overriding guideline courts should always keep in mind the basic policy of the FOIA to encourage the maximum feasible public access to government information….’ Nationwide Bldg. Maintenance, Inc. v. Sampson, 559 F.2d 704, 715 (D.C.Cir.1977). As a consequence, the listed exemptions to the normal disclosure rule are to be construed narrowly. See Rose, 425 U.S. at 361, 96 S.Ct. at 1599. This is particularly true of Exemption (6). Exemption (6) protects only against disclosure which amounts to a ‘clearly unwarranted invasion of personal privacy.’ That strong language ‘instructs us to ’tilt the balance [of disclosure interests against privacy interests] in favor of disclosure.'”
I would file an order of contempt. I would challenge the redaction by DHHS as a circuitous attempt on the part of DHHS to avoid the order of the District Court under the FOIA statutory laws and previous case law.
This has nothing to do with my lawsuit.
I filed an administrative appeal re this matter.
Thank you for all the hard work you’re doing for those of us unable to! Please take care of yourself! ❤
Reblogged this on The Other Side Of The Stretcher and commented:
I guess NIH never thought a patient would beat them in a #FOIA lawsuit!
They tend to not follow the law and respond to these requests!
Jeannette Burmeister has done an awesome job! Not easy for a patient do this amount of work!
We must congratulate here again for a job well done!
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