Author Topic: IOM Public Access File  (Read 1917 times)

Ess

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IOM Public Access File
« on: February 09, 2014, 11:31:42 PM »
Thanks for posting the IoM presentations and videos altogether, Wildaisy.  Do we know what the link is for the e-mail comments that were sent in--but not 'presented'--these were also supposed to be made public?  Thanks!!

Patricia

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Re: IOM Public Access File
« Reply #1 on: February 09, 2014, 11:55:56 PM »
I do not know where those statements will be kept available to the public, but I have written to IOM to ask.  If they let me know where they are, I'll post their answer.

I did find this:

Quote
In accordance with federal law and with few exceptions, information-gathering meetings of IOM committees are open to the public, and any written materials provided to the committee by individuals who are not officials, agents, or employees of the National Academies are maintained in a public access file that is available for examination.


http://www.hhs.gov/advcomcfs/notices/faqs-iom.html

From this statement, it appears that HHS expects IOM to keep all the written statements provided to the committee "by individuals who are not officials, agent, or employees of the National Academies" in a public access file that is available for examination.

http://www.iom.edu/Activities/Disease/DiagnosisMyalgicEncephalomyelitisChronicFatigueSyndrome/2014-JAN-27.aspx

Quote

Public Comments: Written comments may be submitted to the committee at any time during our study process. There is no deadline or character limit to submit comments. As with any information sent to inform the committee, all written comments will be placed in a Public Access File in compliance with Section 15 of the Federal Advisory Committee Act.
 
 If you would like to submit written comments for the first meeting, please use the email (mecfsopensession@nas.edu). Please focus your comments on the following question: "What is the most important aspect or information that this committee should consider throughout the course of the study?" Written comments received by January 22, 2014 will be distributed to the committee before the meeting on January 27. After January 27, written comments should be sent to the project email address (mecfs@nas.edu). All comments will be considered by the committee, but they may be distributed after the meeting is adjourned.




« Last Edit: February 10, 2014, 12:16:27 AM by Wildaisy »
Unity of action without unity of purpose makes the ship go around in circles.  ~ Khaly Castle 2011

Ess

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Re: IOM Public Access File
« Reply #2 on: February 10, 2014, 12:42:41 AM »
Thanks very much for this, Wildaisy--you're on it !!   :)

Patricia

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Re: IOM Public Access File
« Reply #3 on: February 10, 2014, 08:37:15 PM »
I guess I should not be surprised, but I am.  I asked IOM where I could find the written statements and they replied that I would need to file a form in order to know where the written statements are.

The lack of transparency in HHS and IOM regarding this so-called "study" is overwhelming.  What can they be hiding that is so important to them to keep the public from knowing?

Here is their response:

Quote
You may contact the National Academies’ Public Access Records Office to make an inquiry about the project’s Public Access File. The link to this form is available via the Project Information page in the National Academies’ Current Projects System.

They certainly do not make it easy.  They couldn't even give me the link to the Public Access Records Office to ask.

I found their form and submitted it.  Here is the response:

Quote
The Public Access Records Office received your request or inquiry.  Please allow up to ten business days for a response.     

Thank you for your interest in The National Academies. 

WHAT ARE THEY HIDING WITH ALL THIS OBFUSCATION?
« Last Edit: February 10, 2014, 09:01:14 PM by Wildaisy »
Unity of action without unity of purpose makes the ship go around in circles.  ~ Khaly Castle 2011

Ess

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Re: IOM Public Access File
« Reply #4 on: February 10, 2014, 11:28:10 PM »
OMG--obstacles, hurdles and roadblocks ALL the way  .   .   . at every step and turn.   They must NOT like all the UNtoward comments and suggestions that so many sent in.   Sooo--comments posted publicly--yet you have to get thru the secrecy and the locks and the keys to get at the information.  WOW!!  More tell-tale tactics.   How will the public at large ever have access to this information when the public information is hidden??  We've got work to do!  Thanks for going the distance for us on that, WD--much appreciated!!!   :) :) :)

Patricia

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Re: IOM Public Access File
« Reply #5 on: February 11, 2014, 06:08:29 PM »
It is even worse than I thought.  I received a response to my request for access to their "Public Access File":

Quote
THE NATIONAL ACADEMIES
Advisers to the Nation on Science, Engineering, and Medicine

PROJECT:   Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
PIN#   IOM-BSP-13-05
 
Thank you for your request.  The study's project record is available in Current Projects via our homepage under Events & Activities. 

http://www.nationalacademies.org/

  There you will find meeting dates, meeting agendas, meeting summaries and a bio sketch of committee members, in addition to a hyperlink to the report once it's published.

Written materials presented to the committee by any organization or by individuals who are not officials, agents, or employees of the institution are subject to public disclosure and are listed in the Public Access File in accordance with the requirements of Section 15 of FACA.
 
A List of Materials for the Public Access File on the referenced project(s) is included in this email as an attachment.
 
If you are interested in any item(s) on the list, make your selection and send this office an email requesting a copy of the specific items.  This office will inform you of the fees and how to pay for materials. 
 
FEES:

1-20 files on cd's:   $12.00
21-50 files on cd's:  $20.00
51 or more files on cd's:  $50.00
  • We do not transmit files by email.
  • No charge for postage; shipping is free via USPS.
  • Payment by check or money order only.
Thank you for your interest in The National Academies.
 
Regards,
Public Access Records Office (PARO)
The National Academies
Washington DC  20001
www.national-academies.org
Email:  PARO@nas.edu

« Last Edit: February 11, 2014, 06:17:27 PM by Wildaisy »
Unity of action without unity of purpose makes the ship go around in circles.  ~ Khaly Castle 2011

AnneSpaceCoast

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Re: IOM Public Access File
« Reply #6 on: February 11, 2014, 07:03:40 PM »

They charge to see those public records.
They left the price out of the fine print regarding public access.
Im not sure that's 100% publics.
What about the people who don't have the 50 bucks?
"I am able to do all things through the help of Christ, which strengtheneth me." ~Philippians 4:13~

Patricia

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Re: IOM Public Access File
« Reply #7 on: February 11, 2014, 09:06:15 PM »
Here is the list of documents contained in the Public Access File at the time of my request.


IOM Study on Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
Public Access File (through 1/10/2014)



1. Rutherford, George.
10/8/2013
Email to IOM staff, Rick Erdtmann with PDF attachments:
Goodwin Ann Epidemiol 2011.pdf
Clark Br J Psychiat 2011.pdf
Kingma J Epidemiol Comm Health 2013.pdf


2. Frey, Patrick. Food and Drug Administration.
10/08/2013
Email to IOM staff, Rebecca English, with attachment:
Patient-Focused Drug Development Meeting 04-25-2013 AT.pdf


3. Proskauer, Charmain. Massachusetts CFIDS/ME & FM Association.
10/09/2013
Email to IOM staff, Kate Meck and Carolyn Fulco, without attachment.
“RE: Solicitation for Nominations: IOM Committee on Diagnostic Criteria for ME/CFS”


4. Spotila, Jennie.
10/11/2013
Email to project APO, Kate Meck, without attachments.
“Re: Clinical Case Definition for ME/CFS”


5. Wooding, Adrienne.
10/11/2013
Three emails to project APO, Kate Meck, without attachments.
“Re: ME/CFS Research Update from Simmaron”
“Re: ME/CFS Research Update from Simmaron”
“Me”


6. Woodruff, LK.
10/13/2013
Two emails to IOM general inbox, without attachments.
“Horowitz's 15 pt MSID Model; his NEW BOOK ships Nov 12th”
“Gene scans solve mystery diseases”


7. Vernon, Suzanne. The CFIDS Association of America.
10/17/2013
Email to IOM staff, Kate Meck and Carolyn Fulco, with attachment:
PrimerFinal3.pdf


8. Kitei, Mindy.
10/21/2013
Email to project APO, Kate Meck, with attachment:
The Aids Drug No One Can Have.pdf


9. Vernon, Suzanne. The CFIDS Association of America.
10/27/2013
Email to IOM staff, Carolyn Fulco and Kate Meck, with attachment:
Case Definition Letter final 10-25-13.pdf


10. Woodruff, LK
10/28/2013
Email to IOM general inbox, “Here is the CFS...then 'CFIDS'...then 'ME/CFS' ...'experts' list”


11. Vernon, Suzanne. The CFIDS Association of America.
11/01/2013
Email to IOM staff, Carolyn Fulco, with attachment:
Definition ExaminingCaseDefinitionCriteria .11.1.2013.docx


12. Dimmock, Mary.
11/3/2013
Email to project APO, Kate Meck, with attachment:
DHHS Definition Initiatives May 12 2013.pdf


13. Moore, Billie. 11/03/2013 Email to project APO, Kate Meck, with attachments: IACFSME-PRIMER-may 2012.pdf The Table-4-2013.pdf me-cfs-full 30-page CANADIAN definition-IACFS-ME.pdf INTERNATIONAL CONSENSUS CRITERIA -7-2011 -39 pg..pdf


14. Burmeister, Jeannette. Free University Berlin School of Law.
11/04/2013
Email (with attachment) and fax to IOM ME/CFS Study:
“An Open Letter from ME/CFS Advocates to the Honorable Kathleen Sebelius, U.S. Secretary of Health and Human Services.”


15. Lancaster, Cali.
11/04/2013
Email to IOM ME/CFS Study, with attachment:
Snell, C.R., S.R. Stevens, T.E. Davenport, J.M. Van Ness. 2013. Discriminative validity of metabolic and workload measurements for identifying people with chronic fatigue syndrome. PHYS THER 93:1484-1492 (Epub Jun 27).


16. Egan, David.
11/05/2013
Email to IOM MECFS Study, without attachment.
“ME/CFS definition contract”


17. Lee, N., C. Woods, C. Kitt. HHS and NIH.
11/06/2013
Materials provided to IOM study staff.
Study on Diagnostic Criteria for Myalgic Encephalomylitis/Chronic Fatigue Syndrome Sponsors’ Topics and Questions for the Committee to Consider.


18. Egan, David.
11/12/2013
Email to study APO, Kate Meck, “Re: ME/CFS definition contract”


19. Spinhirne, Jerrold.
11/12/2013
Email to IOM staff, Sherla Allen, Clyde Behney, without attachment.
“An Open Letter to the Institute of Medicine Regarding the HHS/IOM Contract for New Diagnostic Criteria for ME/CFS”


20. Burmeister, Jeannette. Free University Berlin School of Law.
11/15/2013
Email to project APO, Kate Meck, with PDF attachments:
Sebelius_Advocates_Letter_Updated.pdf
Sebelius_Advocates_Letter.pdf


21. Unger, Elizabeth. Center for Disease Control and Prevention.
11/15/2013
Email to project APO, Kate Meck and staff, with PDF attachment:
FDA Multisite Clinical Study of CFS – April 2013.pdf


22. Egan, David.
11/16/2013
Email to project APO, Kate Meck, without attachment.
“IOM contract to define ME/CFS”


23. Egan, David.
11/19/2013
Email to project APO, Kate Meck with links:
“Myalgic encephalomyelitis: International Consensus Criteria”
“Myalgic encephalomyelitis – Adult & Paediatric: International Consensus Primer for Medical Practitioners”
“Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Clinical Working Case Definition, Diagnostic and Treatment Protocols”
“Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Clinical Case Definition and Guidelines for Medical Practitioners An Overview of the Canadian Consensus Document.”


24. Speece, Merry.
11/24/2013
Email to IOM general inbox, without attachment.
“lack of integrity”


25. Duma, Sandra.
11/25/2013
Testimony for the December 2013 CFSAC Meeting.docx


26. Vernon, Suzanne. The CFIDS Association of America.
11/26/2013
Email to project RSO and APO, Ceci Mundaca-Shah and Kate Meck, with attachment:
CFS-ME-The Voice of the PatientFINAL-Sept2013 (2).pdf


27. Wilson, Heather. President of ANZMES.
11/28/2013
Email to IOM ME/CFS Study and IOM President, Harvey Fineberg, with attachment:
An open letter to the honorable Kathleen Sebelius US Secretary of Health and Human Services.pdf


28. Spinhirne, Jerrold.
12/02/2013
Email to IOM staff, Sherla Allen, without attachment.
“An Open Letter to the Institute of Medicine Regarding the HHS/IOM Contract for New Diagnostic Criteria for ME/CFS”


29. Woodruff, LK.
12/03/2013
Email to IOM staff, without attachment.
“The NCHS lists no illness or 'disease' called 'ME/CFS'


30. Lambert, Karen.
12/03/2013
Email to IOM MECFS Study, without attachment.
“Story Idea: HIV-Negative AIDS: Is it CFS, GWS, or AIDS?”


31. Bokelman, Andrew.
12/03/2013
Email to project APO, Kate Meck, without attachment.
“RE: Testing your conclusions?”


32. Wooding, Adrienne.
12/04/2013
Email to IOM MECFS Study email, without attachment.
“Re: Me”


33. Coffman, Elaine.
12/05/2013
Email to project RSO, Ceci Mundaca-Shah, without attachment. “IOM Clinical Definition of Chronic Fatigue Syndrome [IOM-BSP-13-05] - Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome”


34. (Anonymous)
12/11/2013
Email to project RSO, Ceci Mundaca-Shah, without attachment:
“CP Feedback [IOM-BSP-13-05] - Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome”


35. Cook, D.
12/12/2013
Two emails to project RSO, Ceci Mundaca-Shah, without attachments:
“Post-Exertion Malaise (PEM) [IOM-BSP-13-05] - Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome”
“ME versus CFS [IOM-BSP-13-05] - Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome”


36. Wooding, Adrienne.
12/12/2013
Email to project RSO, Ceci Mundaca-Shah, without attachment:
“Hopeful [IOM-BSP-13-05] - Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome”


37. Petrison, Lisa. Paradigm Exchange.
12/14/2013
Blog links sent to IOM President, Harvey Fineberg (email not included): http://www.occupycfs.com/2013/11/25/nothing-to-see-here/
http://www.paradigmchange.me/


38. Woodruff, LK.
12/18/2013
Email to IOM MECFS Study email, without attachment:
“RE: The 12/17/2013 Open Letter form CFS advocates to Sebelius & the HHS (and more) re: the IOM contract”


39. B, Laurel.
12/23/2013
Email to IOM MECFS Study email, with YouTube link attached:
“RE: Video Testimony [IOM-BSP-13-05] - Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome” http://www.youtube.com/watch?v=LvweCk44WHs


40. Petrison, Lisa. Paradigm Exchange.
12/23/2013
Email to Project RSO, Ceci Mundaca-Shah, with attachment:
“An Open Letter to the Honorable Kathleen Sebelius, U.S. Secretary of Health and Human Services”


41. Bokelman, Andrew.
12/24/2013
Email to IOM MECFS Study email, with PDF attachment:
http://sacfs.asn.au/download/guidelines_psychiatrists.pdf


42. Bokelman, Andrew.
12/29/2013
Two emails to IOM MECFS Study email, with links:
http://annals.org/article.aspx?articleid=705247
https://niceguidelines.files.wordpress.com/2009/10/twisk-maes-cbt1.pdf


43. Chapo-Kroger, Lori. PANDORA Org.
12/30/2013
Email to project RSO, Ceci Mundaca-Shah, and project APO, Kate Meck, with attachment:
Literature for IoM-6.doc


44. Bokelman, Andrew.
01/09/2014
Email to IOM MECFS Study email, without attachment.
“Presentations from ME/CFS groups”


45. Woodruff, LK.
01/09/2014
Email to IOM general email, without attachment.
“FW: Maes et al on the various CFS, and ME, definitions 2013”


46. Woodruff, LK.
01/10/2014
Email to IOM MECFS Study email, without attachment.
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Patricia

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Re: IOM Public Access File
« Reply #8 on: February 11, 2014, 09:08:45 PM »
They call this a "Public Access File," but the only way you can read the files is to pay them and have them send them to you on a CD. 

This is not what I consider a "public file" to be.
Unity of action without unity of purpose makes the ship go around in circles.  ~ Khaly Castle 2011

nielk

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Re: IOM Public Access File
« Reply #9 on: February 11, 2014, 10:56:04 PM »
I (Gabby Klein)sent an e-mail about panel selection on Dec. 23rd.  It doesn't appear on the list.

Patricia

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Re: IOM Public Access File
« Reply #10 on: February 12, 2014, 12:06:20 AM »
Gabby, I think if I were you I would contact them and ask them where the email is which you submitted Dec. 23.  The address is in an earlier message in this thread.
Unity of action without unity of purpose makes the ship go around in circles.  ~ Khaly Castle 2011

Ess

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Re: IOM Public Access File
« Reply #11 on: February 12, 2014, 02:53:11 AM »
Tks, Wildaisy--I don't see my name on the list either--comments sent in to STOP the IoM and adopt CCC--expanded upon, of course!!!  How many more comments from people have they 'omitted' ?   Public Access??  Really !  The public comments are essentially hidden and some are 'mysteriously missing.'  I will need to follow up as well.

hikinglo

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Re: IOM Public Access File
« Reply #12 on: February 12, 2014, 10:33:59 PM »
My exchange in early Dec is not listed either.  I was surprise to get their Dec 3 "Provisional Committee Slate Posted" email.  I never signed up to their email list!

[Me]:
Sent: Wednesday, December 04, 2013 11:59 AM
To: IOM MECFS Study
Subject: "If you have any additional questions, please feel free to contact us"

My first question:

How did I get on this IOM/NAS mailing list?  I was invited to subscribe, but I did not subscribe.

I would like to know who gave you my email address, or how you obtained it (technical specifics, please - simple or complex).


[IOM]:
Dear ____,

I’m sorry you were inconvenienced. Your name and email were subscribed to our listserv via the website for this study. The only information we collect on our end is a name, email, and the date of subscription (in your case, 10/26/2013). We have removed your name from our mailing list, so you should not receive any more announcements.

Best,
IOM Staff for the Committee on Diagnostic Criteria for ME/CFS



[Me]:
Subject: Re: "If you have any additional questions, please feel free to contact us"

Date: Wed, 04 Dec 2013 16:19:08 -0500

To: IOM MECFS Study <mecfs@nas.edu>

Thank you for a timely response.

I did not say I was inconvenienced; I did not ask to be removed from the list.

I asked who submitted my information, and/or how my name and email address were obtained by your organization.

If you know the date, my name and email address, then you can look up the submission data and inform me as to where my info originated.

I would appreciate that info.  Thank you.



[When it appeared they were not going to reply, I  asked again later the next day]:

[Me]:
Sent: Thursday, December 05, 2013 3:00 PM
To: IOM MECFS Study
Subject: Re: "... please feel free to contact us"

Hello,

I did not ask for this info lightly.

In all seriousness, I am requesting the origin data of my name and email address you state was submitted to your database on 10/26/2013.

Thank you.



[IOM]:
On 12/6/2013 9:10 AM, IOM MECFS Study wrote:

Dear _____,

I asked my colleagues who manage the listserv and related databases and they confirmed again that the only information collected by our system is your name, email address, and the date of subscription. We do not have “origin data” to provide to you.

Best,
IOM Staff for the Committee on Diagnostic Criteria for ME/CFS



[Me]:
Sent: Friday, 12/06/2013 11:10 AM
To: IOM MECFS Study
Subject: Re: "... please feel free to contact us"

Thank you.


I will add that:
a) I was sent the same invite everyone else got via CFSAC listserv our of HHS.

b) IOM never put my name back on the list (not that I care, just that I told them I never ask for it to be removed in my original email inquiry - I merely asked where they got it.  So I guess they didn't like me asking these types of questions? :), and;

c) I don't believe for one second there isn't ASCII or similar code that reveals the sources of all transmissions in, out and through their data collection bases for basic security purposes.  For gosh sakes, even I (techno idiot) can access message ID and other data collection sources, depending on the day and the free tech support. (Translating it into an origination source is for the computer geek though, not me.)  You think federal level contractors can't find this stuff out in a flash? They know my info was submitted on 10/26/2013.   If they know that, then they know where it came from.   I had no idea it was submitted - I never received any sort of confirmation email around that time.

d) My first suspect for handing out my info, against their privacy law, is CFSAC listserv (HHS), since I "don't get out much" online.  I'd love to be able to prove that, or find, through investigation of this 'contract', that HHS broke yet another law by passing on CFSAC listserv's email list, violating their own privacy law.

Patricia

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Re: IOM Public Access File
« Reply #13 on: February 13, 2014, 12:01:07 AM »
hikinglo, I know it may not sound like a big deal that the IOM listserve entered you and your contact information without your knowledge and consent, but I really think it is.

Remember, both HHS and IOM were concerned that ME patients would boycott the IOM and not participate.  HHS and IOM needed patients to participate in order to give the appearance of legitimacy to the report IOM will eventually release defining ME, very likely defining ME as a psychological disease and telling our doctors that what we need is cognitive behavioral therapy and graded exercise therapy--and perhaps antidepressants.

If ME patients had chosen to boycott the whole thing, then HHS and IOM would have been hard put to sell the process as legitimate.  No one knew that the patient community would be successfully lured into participating by blogs such as Occupy CFS and people posting on forums such as Phoenix Rising that patients such participate in order to avoid the IOM's report being a disaster for ME patients.  So patients did participate.  Since IOM has not paid any attention to patient input, it is unlikely that the patient participation will prevent such a disastrous outcome.

But HHS and IOM had no way to know that patients would participate.  I think it is very likely that CFSAC, and yes, I am talking about Nancy Lee, very likely gave the list to IOM and IOM just put everyone on the CFSAC list on the IOM list.  This "ensured" the appearance of patient participation, which HHS and IOM needed to convince the public that it is a legitimate process.

I find this action--registering you for their list without your knowledge--perfectly in line with their secrecy and demonstrated lack of respect and consideration for patients.

I am glad you are making a record of this.
Unity of action without unity of purpose makes the ship go around in circles.  ~ Khaly Castle 2011

hikinglo

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Re: IOM Public Access File
« Reply #14 on: February 13, 2014, 12:23:08 AM »
Indeed.  When Attorney's Burmeister are successful in procuring a suspension and investigation into the HHS-IOM process re the re -'definition study' of ME/CFS, and all the mishandling is brought to light, this will be just one more piece of damning evidence.  I hope others have done their due diligence and have kept records of privacy breaches and other correspondence (or lack of correspondence).