Jeannette Burmeister acquired foia document re. P2P

Nielk

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Part 1

http://thoughtsaboutme.com/2014/10/19/p2p-foia-documents-part-1/

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.
continue HERE

Part 2

http://thoughtsaboutme.com/2014/10/...2-we-also-recently-had-a-foia-request-on-cfs/

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.
continue HERE
 
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jimells

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I keep getting this crazy idea that a young hungry lawyer could maybe make hay with these kind of documents. I'm thinking specifically of the Americans with Disabilities Act. I know it's likely that Uncle Sam has made himself immune from the ADA by waving his magic legal wand, but it is somewhat satisfying to imagine HHS officials squirming in the witness box.

Wikipedia said:
See 42 U.S.C. §§ 1213112165.
Title II prohibits disability discrimination by all public entities at the local (i.e. school district, municipal, city, county) and state level. Public entities must comply with Title II regulations by the U.S. Department of Justice. These regulations cover access to all programs and services offered by the entity. Access includes physical access described in the ADA Standards for Accessible Design and programmatic access that might be obstructed by discriminatory policies or procedures of the entity.
I suspect the record shows HHS/CDC/NIH policies have denied access to research funding programs. Does the law allow discrimination against researchers acting for our benefit? It could be interesting to find out. Of course, it looks like the Feds exempted themselves by leaving themselves out of the definition of "public entity".
 

5150

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When somebody finally writes on the wicked history of CFS and trust me it will be a heck of a best seller, this will come on handy.
I hope it gets accomplished fast. This disease is a killer at its' last stages. But ebola will get the research bucks that we won't receive, because it will kill you faster? My last 30 years have been hell-on-earth, and now I see people are dying after fighting so hard, for so long. What a freakin Tragedy.

When you are dead, what does it matter if it took 3 days or 30 years?WHERE IS THE AMERICAN PUBLIC? THIS DISEASE SHOULD BE FRONT PAGE NEWS.(oh hell, sorry about getting so worked up.) For what reason is it not? If (They) are sued by a class action, the US Govt takes a big financial hit? oh geez, is it about the money again? I've always loved and supported my country, but they are stonewalling me away from that.

What's the difference if it takes 3 days, or 30 years, to kill you? It isn't as if those Lost years were as pleasant as without this asinine illness. No, we have struggled hard and suffered greatly. I hope a quest will be successful in getting info that is being suppressed. Thank you Nielk for your part.

This has potential to be a game-changer.
 
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Valentijn

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Not much of interest so far - but that's to be expected, since these are the ones they handed over willingly and redacted quite a bit.

There are a couple slightly snotty comments in the emails from the 2nd document:
Lawrence Tabak (05-JAN-2013):
I spoke with Howard Koh yesterday - he had a number of his colleagues on the phone including Wanda Jones and Nancy Lee - and as is typical for all things related to ME/CFS the discussion became complicated quickly.
Susan Maier (24-APR-2013) - In response to another NIH employee agreeing to be involved in a working group:
Thanks Kathy, that is great news! I know you will learn to regret your decision, but it's made now!!!!(hahaha)
Susan Maier (14-NOV-2013) - In response to a completely redacted suggestion:
Fabulous! I can be a little cautious when it comes to this community.
There's also some heavily redacted chatter about using a certain term and/or avoiding a different term in responding to HHS, also seems to involve ME/CFS definitions.

There's a patient advocate who they're trying to get involved, but her identity is completely redacted, despite that Robert Miller's participation hasn't been redacted at all:
advocate.gif
So since she's been so heavily redacted, now I'm very curious as to who she is, and why she's being so redacted!

That's 25 out of 78 pages, I'll put additional comments in a separate post, assuming I'll have any.
 

Nielk

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Somebody should get it accomplished fast. This disease is a killer at its' last stages. But ebola will get the research bucks that we won't receive, because it will kill you faster? My last 30 years have been hell-on-earth, and now I see people are dying ! when you are dead, what mattersif it took 3days or 30 years?WHERE IS THE AMERICAN PUBLIC? THIS DISEASE SHOULD BE FRONT PAGE NEWS. The suits are working against it. What other reason is it? We sue them, the US goes bankrupt due to it. I've always loved and supported my country, but they are stonewalling me out of that.

What's the difference if it takes 3 days or 30 years to kill you? It isn't as if those years were as pleasant as without this asinine illness. No, we have struggled hard and suffered greatly. I hope Nielk's quest will be successful in getting info that is being suppressed. Thank you Nielk.

This has potential to be a game-changer.
Just to be clear, Nielk is not the one who procured these FOIA documents. I just posted them here. It is attorney/blogger/patient Jeannette Burmeister who is doing all this hard complicated work
 

Valentijn

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Mariela Shirley (02-JAN-2014) - In private response to Susan Maier regarding a forwarded email from Robert Miller requesting some additional info about the CFSAC recommendations not being acted upon:
Lovely. At least no question about IOM!
Some alarm is expressed by someone anonymous ("E") using the "Prevention" inbox at NIH to forward an email with their comment, followed by a lot of rapid forwarding from other people (Deborah Langer, Jody Engel, Paris Watsonwith) (06-JAN-2014), in reply to an email asking for information about the meeting on January 6th and 7th (was this a secret meeting?):
I thought this meeting was under wraps!
Another forwarded email on January 7th from another patient complaining about the meeting and the lack of treatment.

They definitely took notice of the criticism and increased activity on the web:
twitter.gif

They then seem to go into damage control mode for a week or so, people getting pushed to quickly get talking points prepared to respond to questions and the emails.

Susan Maier (10-JAN-2014) to 7 NIH people:
I think we are in agreement that we are not releasing the panel names until the first day of the workshop (Dec 2014), the speakers name and agenda for the workshop until the workshop has been approved, and the working group roster until ???? (to be decided).

Fasten your seatbelts and return your tray tables to the upright position because it's going to be a bumpy ride :)
Susan Maier (10-JAN-2014):
Thanks Paris. (Redacted) Let me know your thoughts on this issue. I would rather start small and add to the content tha[n] have to battle the release of longer more complex content.
Mariela Shirley (13-JAN-2014) to Susan Maier regarding dealing with the patient emails:
Response needed. Can you send the P2P TPs [talking points]? Keep a record of these transactions and do not include any other name but yours (not even as BCC). If you want to send to someone as a heads up, forward your response to the email to that person(s).
Another rather ranty patient email is included. Seriously, ANGRY CAPS are so old fashioned!

Then there's a two-page patient email/comment, which looks more rational, well-organized, and intelligent. As a side note, their site for submitting comments seems to strip out paragraphs. Ugh.

Then a couple more short and sweet queries from patients regarding the panelists and public input.

Then a direct email from Jennie Spotila to Mariela Shirley, similarly requesting a list of those who attended the closed P2P meeting. Followed by this somewhat amusing piece:
spotila.gif

Mariela Shirley then sent out identical copies of the Talking Points in response to the emails, regardless of what the emails where actually asking. Followed by a patient emailing back to point out that none of their questions were answered, and restate two short questions. The Jennie Spotila also responded to point out that her questions had not been answered, also briefly restated in the new email. And a third patient with the same problem and response.

Susan Maier (22-JAN-2014), in response to the response Mariela Shirley received from the patients:
File all these responses. No need to answer them directly.
Mariela Shirley (22-JAN-2014) responding to Susan Maier:
Already done re filing. No further responses were provided.
Then some more concern about potential media and web attention:
monitor.gif

NPR.gif

And that's the end of the 2nd file.
 
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Valentijn

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Is the redacted patient advocate possibly Suzanne Vernon? It looks like she worked at the CDC for a long time in at least some of the areas described in the relevant email.
 

Valentijn

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In general, it seems that their private approach to the P2P process is 100% politically driven.

They're not focused on finding or giving honest answers, but rather on how things are appearing in public, and damage control. The primary goal is to avoid public outcry, while still producing the outrageous P2P draft and final documents.

And as such, they are extremely sensitive to that public outcry. It seems to produce a reaction much more strongly than incidentals such as "good science" do. So although they are responding with canned bullshit to honest and intelligent complaints, they ARE reading them, and those complaints are making them sweat quite a bit.
 

A.B.

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We are assessing the evidence from research using any case definition to determine how the outcome for response differs.
What does this even mean? Other than these people being so stupid to think that different definitions are interchangeable.

PS: oh wait, that's the psychobabbler position. It's just somatization, therefore the symptoms don't matter.

PPS: and since different definitions are lumped together, no clear pattern can be found, which in the magic world of psychobabble constitutes proof that it is psychosomatic. In reality it's just flawed circular thinking. Essentially it is: "we fail to find a common pattern, therefore we have found a common pattern".
 
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NK17

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Thanks @Nielk for keeping us posted on all developments regarding Jeannette Burmeister's lawsuit based on the FOIA.

Thanks @Valentijn for posting all those juicy e-mails exchanges from which we can clearly see how bureaucracy works at its best in producing the worst outcome for PWME.
 

Dreambirdie

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In general, it seems that their private approach to the P2P process is 100% politically driven.

They're not focused on finding or giving honest answers, but rather on how things are appearing in public, and damage control. The primary goal is to avoid public outcry, while still producing the outrageous P2P draft and final documents.

And as such, they are extremely sensitive to that public outcry. It seems to produce a reaction much more strongly than incidentals such as "good science" do. So although they are responding with canned bullshit to honest and intelligent complaints, they ARE reading them, and those complaints are making them sweat quite a bit.
Good to know that public outcry is at least having some effect.

Thanks for your summaries Valentijn. Much appreciated.
 

Snowdrop

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What does this even mean? Other than these people being so stupid to think that different definitions are interchangeable.

PS: oh wait, that's the psychobabbler position. It's just somatization, therefore the symptoms don't matter.

PPS: and since different definitions are lumped together, no clear pattern can be found, which in the magic world of psychobabble constitutes proof that it is psychosomatic. In reality it's just flawed circular thinking. Essentially it is: "we fail to find a common pattern, therefore we have found a common pattern".
Sounds to me like they are 'shopping around' for which definition they can use that will best serve the purpose of ignoring us while pretending to satisfy some of our more difficult to deny concerns.
 

Snowdrop

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The email from Suzanne Vernon was most intriguing to me because it cc'd a person at a company called iq solutions.
Perhaps it might be of some value to check them out and see if the patient community can't engage them more directly as to our very legitimate concerns. I'm not sure yet how to parse what I'm reading regarding them. Here's the link:

http://www.iqsolutions.com/
 

Denise

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The email from Suzanne Vernon was most intriguing to me because it cc'd a person at a company called iq solutions.
Perhaps it might be of some value to check them out and see if the patient community can't engage them more directly as to our very legitimate concerns. I'm not sure yet how to parse what I'm reading regarding them. Here's the link:

http://www.iqsolutions.com/

If memory serves me correctly, IQ Solutions is the group that did the tech work for the NIH Opioid P2P meeting in Sept.
 

jimells

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Is the redacted patient advocate possibly Suzanne Vernon? It looks like she worked at the CDC for a long time in at least some of the areas described in the relevant email.
Well, the revolving door between the government and industry lobbyists is very well established in DC. There's no reason to think the same revolving door doesn't turn at NIH.

It's a brilliant strategy to put one's own people into patient advocacy groups - they are much easier to co-opt that way. And in the US, co-opting the opposition is the name of the game. That's an important reason there's so little opposition to government policies in the US. Once a left-leaning person gets on the non-profit bandwagon, they don't want to get off! I call them grant junkies. The money soon becomes more important than the mission.