Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
Discuss the article on the Forums.

Jeannette Burmeister acquired foia document re. P2P

Discussion in 'Action Alerts and Advocacy' started by Nielk, Oct 19, 2014.

  1. Nielk

    Nielk

    Messages:
    6,877
    Likes:
    10,614
    Part 1

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

    continue HERE

    Part 2

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

    continue HERE
     
    Last edited: Oct 20, 2014
    leela, Ren, Valentijn and 10 others like this.
  2. Esther12

    Esther12 Senior Member

    Messages:
    8,449
    Likes:
    28,522
    Thank to Jeannette for making these all available. Think it will be a while before I get a chance to take a look at them. If anyone goes through them first it would be good if they could pull out interesting paragraphs.
     
    Ren, beaker, WillowJ and 1 other person like this.
  3. jimells

    jimells Senior Member

    Messages:
    1,998
    Likes:
    6,105
    northern Maine
    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.

    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".
     
    Ecoclimber, medfeb, beaker and 3 others like this.
  4. lnester7

    lnester7 Seven

    Messages:
    2,399
    Likes:
    3,454
    USA
    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.
     
  5. 5150

    5150 Senior Member

    Messages:
    316
    Likes:
    218
    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.
     
    Last edited: Oct 21, 2014
    jimells and lnester7 like this.
  6. Valentijn

    Valentijn Senior Member

    Messages:
    14,281
    Likes:
    45,814
    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):
    Susan Maier (24-APR-2013) - In response to another NIH employee agreeing to be involved in a working group:
    Susan Maier (14-NOV-2013) - In response to a completely redacted suggestion:
    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.
     
    jimells, mango, Dreambirdie and 6 others like this.
  7. Nielk

    Nielk

    Messages:
    6,877
    Likes:
    10,614
    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
     
    NK17 likes this.
  8. Valentijn

    Valentijn Senior Member

    Messages:
    14,281
    Likes:
    45,814
    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:
    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?):
    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:
    Susan Maier (10-JAN-2014):
    Mariela Shirley (13-JAN-2014) to Susan Maier regarding dealing with the patient emails:
    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:
    Mariela Shirley (22-JAN-2014) responding to Susan Maier:
    Then some more concern about potential media and web attention:
    monitor.gif

    NPR.gif

    And that's the end of the 2nd file.
     
    Last edited: Oct 20, 2014
    jimells, Roy S, mango and 4 others like this.
  9. Valentijn

    Valentijn Senior Member

    Messages:
    14,281
    Likes:
    45,814
    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.
     
    jimells and NK17 like this.
  10. Valentijn

    Valentijn Senior Member

    Messages:
    14,281
    Likes:
    45,814
    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.
     
    leela, Roy S, jimells and 7 others like this.
  11. A.B.

    A.B. Senior Member

    Messages:
    3,751
    Likes:
    23,189
    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".
     
    Last edited: Oct 20, 2014
    leela, jimells, NK17 and 3 others like this.
  12. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

    Messages:
    1,191
    Likes:
    891
    Mackay, Aust
    Appreciate the breakdown @Valentijn.

    S Vernon is very cozy with Maier and co. I think there are a few emails from Vernon yet to come.

    Is there a 5th columnist in the government ranks - they appeared surprised about some info getting out?
     
    jimells, NK17 and Valentijn like this.
  13. NK17

    NK17 Senior Member

    Messages:
    592
    Likes:
    1,517
    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.
     
    jimells, Nielk and Valentijn like this.
  14. Dreambirdie

    Dreambirdie work in progress

    Messages:
    5,328
    Likes:
    4,049
    N. California
    Good to know that public outcry is at least having some effect.

    Thanks for your summaries Valentijn. Much appreciated.
     
    leela, WillowJ, NK17 and 1 other person like this.
  15. Snowdrop

    Snowdrop Rebel without a biscuit

    Messages:
    2,896
    Likes:
    10,089
    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.
     
    jimells and mango like this.
  16. Snowdrop

    Snowdrop Rebel without a biscuit

    Messages:
    2,896
    Likes:
    10,089
    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/
     
    RL_sparky likes this.
  17. Denise

    Denise Senior Member

    Messages:
    1,095
    Likes:
    3,447

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

    jimells Senior Member

    Messages:
    1,998
    Likes:
    6,105
    northern Maine
    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.
     
    Valentijn likes this.
  19. jimells

    jimells Senior Member

    Messages:
    1,998
    Likes:
    6,105
    northern Maine
    It means, "The interview is over."
     
  20. Valentijn

    Valentijn Senior Member

    Messages:
    14,281
    Likes:
    45,814
    They do all of their IT stuff, as far as I can tell.
     

See more popular forum discussions.

Share This Page