2013 Contract between HHS and IOM

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Timeline of Events (including events, articles, etc.): HHS-IOM Contract 2013 http://www.mecfsforums.com/wiki/Timeline_of_Events,_HHS-IOM_Contract_2013


EVENTS


10/3-4/2012 CFSAC’s voting members issued a recommendation to the secretary of HHS to recognize a definition http://www.hhs.gov/advcomcfs/recommendations/10032012.html


5/23/2013 CFSAC Members Eileen Holderman and Mary Ann Fletcher confront other CFSAC members about the definitions used for ME/CFS http://www.mecfsforums.com/index.php/topic,17906.msg155089.html#msg155089


8/27/2013 HHS Notice of Study on Diagnostic Criteria for ME/CFS http://www.mecfsforums.com/index.php/topic,17505.0.html


8/28/2013 HHS announces a sole solicitation with the Institute of Medicine (OMI) for a study on diagnostic criteria for ME/CFS http://www.mecfsforums.com/index.php/topic,17505.0.html


9/4/2013 HHS announces it is discontinuing the sole solicitation "However, HHS will continue to explore mechanisms to accomplish this work." http://www.mecfsforums.com/index.php/topic,17505.15.html


9/23/2013 HHS announced, through an email sent to the CFSAC listserve that they had contracted with IOM to begin conducting their study on clinical diagnostic criteria for ME/CFS "within the month." http://www.mecfsforums.com/wiki/CFSAC_Announces_HHS_Contract_with_IOM_9/23/2013


9/23/2013 Open Letter to Secretary Sebelius from 35 ME/CFS expert researchers and clinicians to stop the IOM contract and adopt the CCC definition for both research and clinical use http://www.mecfsforums.com/wiki/Open_Letter_to_Hon._Kathleen_Sebelius_9/23/2013


9/23/2013 CFIDS Assn speaks in favor of IOM Contract http://www.research1st.com/2013/09/23/case-definition-debate/ http://www.mecfsforums.com/index.php/topic,17814.msg154797.html#msg154797


9/23/2013 The National Alliance for Myalgic Encephalomyelitis sent a letter to HHS opposing the solicitation of the IOM contract http://www.name-us.org/2013StopIOMAppealBidenCongress.pdf


9/25/2013 Letter by National Alliance for ME to HHS stating their support for the Open Letter from the 35 ME/CFS experts http://www.name-us.org/2013GovtHeedOurExperts.pdf


9/26/2013 PANDORA issues their position statement on HHS and IOM contract http://www.mecfsforums.com/wiki/PANDORA_Position_Statement_on_HHS_and_IOM_Contract


9/28/2013 Dr. Lily Chu sends letter to HHS asking them to cancel the IOM contract http://twenty-years-and-counting.blogspot.com/2013/09/one-heck-of-inspiring-anti-iom-study.html


9/30/2013 Dr. Lucinda Bateman, one of the 35 signers of the Open Letter to Secretary Sebelius, issued a statement saying she supports the IOM http://www.mecfsforums.com/wiki/Bateman_Statement_on_IOM_Contract_2013


9/30/2013 Jennifer Spotila posts the Statement of Work (SOW) from HHS for the IOM contract on her blog http://www.occupycfs.com/2013/09/30/the-statement-of-work/


9/30/2013 Letter from National Alliance for ME to HHS http://www.name-us.org/2013GovtHeedOurExperts2.pdf


10/1/2013 CFIDS Assn of America posts letter (undated) copy which it sent to Dr. Lucinda Bateman asking her if she still supports use of CCC definition http://www.research1st.com/wp-content/uploads/2013/10/Email_IOM-and-the-Clinical-Case-Definition1.pdf and http://www.mecfsforums.com/wiki/Suzanne_Vernon%27s_Letter_to_Dr._Bateman_re:_IOM


10/1/2013 CFIDS Assn Letter to Signers of Open Letter to Secretary Sebelius http://www.mecfsforums.com/wiki/CFIDS_Assn_of_America_Letter_to_Signers_of_Open_Letter_to_Secretary_Sebelius


10/8/2013 CFIDS Assn of America posts "Clearing the Air" http://www.research1st.com/2013/10/08/clearing-the-air/


10/14/2013 PANDORA issues statement "Position on IOM Nominations for ME/CFS Definition Committee" http://www.pandoraorg.net/uploads/Position_on_IOM_Request_for_Nominations.pdf


10/16/2013 National CFIDS Foundation issues statement opposing IOM contract http://www.mecfsforums.com/index.php/topic,18019.0.html


10/18/2013 Dr. Eleanor Stein issues a statement of support for the Open Letter to Secretary Sebelius http://www.mecfsforums.com/index.php?topic=18046.0


10/25/2013: Email from PANDORA.Org: HHS Will Respond to Patients and Experts http://www.mecfsforums.com/wiki/PANDORA_Org_email:_HHS_Will_Respond_to_Patients_and_Experts,_10/25/13


10/25/2013: ME/CFS Researchers and Clinicians Resend Letter With 16 New Signatories to Secretary Sebelius http://www.mecfsforums.com/wiki/Open_Letter_to_the_Honorable_Kathleen_Sebelius,_U.S._Secretary_of_Health_and_Human_Services_10/25/2013


10/27/2013: National Alliance for M.E. Notice: HHS/IOM Contract Can Be Terminated! http://www.mecfsforums.com/wiki/National_Alliance_for_M.E._Notice:_HHS/IOM_Contract_Can_Be_Terminated/


10/28/2013: An Open Letter from ME/CFS Advocates to the Honorable Kathleen Sebelius, U.S. Secretary of Health and Human Services http://www.mecfsforums.com/wiki/Open_Letter_from_ME/CFS_Advocates_to_the_Honorable_Kathleen_Sebelius,_U.S._Secretary_of_Health_and_Human_Services_10/28/2013 Updated 11/9/2013: Letter updated with signatures from 105 additiional advocates https://www.dropbox.com/s/3rewnlskfkfhmjz/Updated%20Signatures.pdf


10/28/2013 IOM Development of a Case Definition for Chronic Multisymptom Illness http://www.mecfsforums.com/wiki/Development_of_a_Case_Definition_for_Chronic_Multisymptom_Illness


11/1/2013 Nominations for IOM Committee on ME/CFS http://www.mecfsforums.com/wiki/Nominations_to_IOM_Committee_for_ME/CFS


11/1/2013 Invest in ME statement http://www.investinme.org/IIME%20Statement%202013-11-01.htm


11/3/2013: National Alliance for M.E. Notice: HHS/IOM Contract CAN BE TERMINATED - Part 2 http://www.name-us.org/AdvocacyPages/OtherActions.htm


11/9/2013 105 advocates' signatures added to 10/28/2013 66 ME/CFS Advocates Send Letter to Secretary Sebelius in Support of their Experts https://www.dropbox.com/s/3rewnlskfkfhmjz/Updated%20Signatures.pdf


11/9/2013 Invest in ME Statement: Invest in ME Statement A Letter to the Honourable Kathleen Sebelius U.S. Secretary of Health and Human Services http://www.investinme.org/IIME%20Statement%202013-11-01.htm


11/11/2013 Call for Investigation by the Inspector General of the IOM’s Conflict of Interest With Respect to ME/CFS http://thoughtsaboutme.com/2013/11/11/call-for-investigation-by-the-inspector-general-of-the-ioms-conflict-of-interest-with-respect-to-mecfs/


11/15/2013 CFSAC Responds to Questions Concerning the Contract with the IOM http://solvecfs.org/cfsac-responds-to-questions-concering-the-contract-with-the-iom/ Also now posted here: http://www.hhs.gov/advcomcfs/notices/faqs-iom.html


11/17/2013: Supplemental Request for Investigation by OIG: Did DHHS Violate its No-Bid-Contract Requirements for IOM Contract? http://thoughtsaboutme.com/2013/11/17/supplemental-request-for-investigation-by-oig-did-dhhs-violate-its-no-bid-contract-requirements-for-iom-contract/


11/19/2013: National Alliance for Myalgic Encephalomyelitis - HHS & IOM: FAQs & Fiction http://www.name-us.org/AdvocacyPages/2013HHS_IOM_FAQs_Fiction.pdf


11/25/2013: Thoughts About ME: Call for the HHS Competition Advocate to Investigate the IOM http://thoughtsaboutme.com/2013/11/25/call-for-the-hhs-competition-advocate-to-investigate-the-iom-contract/


11/28/2013: Letter released from Secretary Sebelius to Christopher Snell, Ph.D., dated November 12, 2013 https://www.dropbox.com/s/4ejpsk2am1fzmul/Secretary%27s%20Response.pdf or http://www.mecfsforums.com/wiki/Sebelius,_Secretary_Kathleen,_letter_to_C._Snell,_Ph.D._dated_Nov._12,_2013


12/3/2013: IOM names provisional committee members, posted on its website http://www8.nationalacademies.org/cp/CommitteeView.aspx?key=49592


12/4/2013: PANDORA Pres. and CEO sends email asking for cooperation with IOM Committee http://www.mecfsforums.com/index.php/topic,18577.msg157168.html#new


12/5/2013 CAA, IOM and the Clinical Case Definition Committee – A Case for Hope http://solvecfs.org/iom-and-the-clinical-case-definition-committee-a-case-for-hope/


12/9/2013: Demonstration against IOM contract (organized by Susan Kreutzer) HHS Building, San Francisco http://www.mecfsforums.com/index.php/topic,18501.0.html


12/10/2013 Demonstration against IOM contract (organized by Susan Kreutzer) Washington, D.C. http://www.mecfsforums.com/index.php/topic,18501.0.html


12/10/2013 Delivery of Petition to Stop the HHS-IOM contract and accept the CCC definition of M.E. by hand delivery (Susan Kreutzer) to Secretary Sebelius and President Obama http://www.mecfsforums.com/index.php/topic,18501.0.html


12/11/2013 CAA Statement in favor of the IOM Contract http://solvecfs.org/cfids-association-update-cfs-advisory-committee/ and http://www.mecfsforums.com/index.php/topic,18703.msg157500.html#msg157500


12/20/2013 Rocky Mountain CFS/ME & FM Association: Letter to IOM About Provisional Committee (letter is dated 12/23/2013) http://www.rm-cfs-fms.citymaker.com/f/Letter_to_IoM_about_Provisional_Committee.pdf and http://www.mecfsforums.com/wiki/Rocky_Mountain_CFS/ME_%26_FM_Association


12/20/2013 PANDORA: Letter to IOM About Provisional Committee (same letter as Rocky Mountain CFS/ME & FM Association http://www.pandoraorg.net/uploads/Letter_to_IoM_about_Provisional_Committee.pdf and http://www.mecfsforums.com/wiki/PANDORA_Letter_to_IOM_About_Provisional_Committee


12/26/2013 IOM sends email announcing open meeting for IOM ME/CFS study on Jan. 27, 2014 http://www.mecfsforums.com/index.php?topic=18806.msg157777#new


1/2/2014 New Letter Requesting Cancellation of HHS-IOM Contract and Signed by 197 Professionals and Advocates Sent to Secretary Sebelius https://www.dropbox.com/s/go3o37oonf0kory/New%20Letter%20Signatures.pdf Also: http://www.mecfsforums.com/index.php/topic,18851.msg157877.html#msg157877


1/6/2014 PANDORA survey: Let's Get It Right Questions for Patients https://www.justsurvey.me/4c655a867473 and http://www.mecfsforums.com/index.php/topic,18884.msg157966.html#msg157966


1/9/2014 Federal Lawsuit Filed Against HHS and NIH Relating to IOM “Study” http://thoughtsaboutme.com/2014/01/09/federal-lawsuit-filed-against-hhs-and-nih-relating-to-iom-study/ and http://www.mecfsforums.com/index.php/topic,18911.msg158029.html#new


1/9/2014 Complaint: Burmeister v. US Dept of HHS, Complaint for Declaratory and Injunctive Relief: https://dl.dropboxuontent.com/u/25307104/20140109_FOIA_Complaint_Redacted.pdf


1/10/2014 IOM announces Open Session Meeting to be held January 27, 2014 http://www.mecfsforums.com/wiki/Institute_of_Medicine_%28IOM%29Meeting_regarding_ME/CFS


1/22/2014 Karen Luoto (K2 for Hope) posted the text of the original email she received from IOM inviting Phoenix Rising Forum to give a presentation at the IOM meeting January 27, 2014 http://forums.phoenixrising.me/index.php?threads/what-is-the-real-question-the-iom-is-asking.27770/ and http://www.mecfsforums.com/wiki/Phoenix_Rising,_email_from_IOM_to_Karen_Luoto,_Pres._date_not_revealed


1/25/2014 National Alliance for Myalgic Encephalomyelitis (N.A.M.E.): Bring Your Outside Voices http://www.name-us.org/AdvocacyPages/Bring%20Your%20Outside%20Voices.htm and http://www.mecfsforums.com/index.php?topic=19087.msg158502#new


1/25/2014 PANDORA: 2 Written Statements for IOM http://www.mecfsforums.com/index.php/topic,19090.msg158517.html#new


1/27/2014 IOM Meeting: DIAGNOSTIC CRITERIA FOR MYALGIC ENCEPHALOMYELITIS/CHRONIC FATIGUE SYNDROME http://iom.edu/Activities/Disease/DiagnosisMyalgicEncephalomyelitisChronicFatigueSyndrome/2014-JAN-27?utm_medium=etmail&utm_source=Institute%20of%20Medicine&utm_campaign=12.26.13+MECFS&utm_content=&utm_term= and http://www.mecfsforums.com/index.php/topic,18918.0.html


4/11/2014 Creation of Thunderclap: Stop the IOM! Adopt the CCC! https://www.thunderclap.it/projects/10666-stop-the-iom-adopt-the-ccc and http://www.mecfsforums.com/index.php/topic,19934.0.html


4/17/2014 IOM announces Tentative Open Session Agenda for Meeting May 5, 2014 http://www.iom.edu/~/media/Files/Activity%20Files/Disease/MECFS/Open%20Session%20Agenda_04%2017%2014.pdf?utm_medium=etmail&utm_source=Institute+of+Medicine&utm_campaign=04.17.14+MECFS&utm_content&utm_term and http://www.mecfsforums.com/index.php/topic,19977.0.html



ADVOCACY:


9/28/2013: Sample Letter to Tell Congress to Listen to Our Experts, Adopt the CCC, Cancel the IOM Contract http://www.mecfsforums.com/index.php/topic,17838.0.html


9/28/2013: People to contact about IOM Contract http://www.mecfsforums.com/wiki/Contact_Information_for_2013_IOM_Contract


10/3/2013 Petition: Thank you to our ME/CFS Experts http://www.thepetitionsite.com/898/238/310/thank-you-to-mecfs-experts/


10/7/2013: Petition to Stop the HHS-IOM Contract and Adopt the CCC https://secure.avaaz.org/en/petition/Stop_the_HHSIOM_contract_and_accept_the_CCC_definition_of_ME/


10/12/2013: Urgent-Ask Congress to Cancel the IOM Contract and Adopt the CCC! http://www.mecfsforums.com/index.php/topic,17973.0.html


11/9/2013: Twitter Campaign for Updated Advocates' Letter 11/9/2013 http://www.mecfsforums.com/index.php/topic,18329.0.html


11/9/2013: Stop the HHS IOM Contract Petition Twitters 11/9/2013 http://www.mecfsforums.com/index.php/topic,18330.0.html

5/5/2014 IOM "Open" Meeting http://www.mecfsforums.com/index.php/topic,19977.0.html



BACKGROUND:


National Academies Contract, The http://ospa.od.nih.gov/nac.html and http://www.mecfsforums.com/wiki/National_Academies_Contract,_The

1/23/2013 IOM Report Re: CFS (Jan. 2013) http://www.mecfsforums.com/wiki/IOM_January_2013_Report_Re:_CFS


9/24/2013 What is IOM? http://www.mecfsforums.com/index.php/topic,17787.0.html


9/25/2013 updated 10/10/2013 IOM Contract - Background http://www.mecfsforums.com/wiki/IOM_Contract_-_Background


9/25/2013 Background on the Open Letter to Secretary Sebelius https://dl.dropboxusercontent.com/u/89158245/MECFS%20Action%20Alert%20Background%20Sept%2025%202013.pdf


9/25/2013 FAQs regarding the letter from the ME/CFS experts stating consensus on the Canadian Consensus Criteria and HHS announcement on the IOM contract https://dl.dropboxusercontent.com/u/89158245/MECFS%20Patient%20comms%20FAQ%20Sept%2025.pdf


10/1/2013 IOM Contract: Statement of Work, Diagnostic Criteria for ME/CFS http://www.mecfsforums.com/index.php/topic,17858.0.html


Updated 10/11/2013 Facts About the HHS-IOM Contract and the Experts Letter http://www.mecfsforums.com/wiki/Facts_About_the_HHS-IOM_Contract_and_the_Experts_Letter


10/28/2013 IOM Development of a Case Definition for Chronic Multisymptom Illness http://www.mecfsforums.com/wiki/Development_of_a_Case_Definition_for_Chronic_Multisymptom_Illness


11/1/2013 Nominations for IOM Committee on ME/CFS http://www.mecfsforums.com/wiki/Nominations_to_IOM_Committee_for_ME/CFS


11/6/2013 IOM Policy on Committee Composition and Balance and Conflicts of Interest http://www.nationalacademies.org/coi/bi-coi_form-0.pdf


11/15/2013 CFSAC Responds to Questions Concerning the Contract with the IOM http://solvecfs.org/cfsac-responds-to-questions-concering-the-contract-with-the-iom/


1/9/2014 Resources List (Susan Kreutzer) http://www.mecfsforums.com/wiki/IOM_Contract_Controversy_Resources_List,_Susan_Kreutzer


2/10/2014 Documents received from HHS/NIH concerning IOM in response to FOIA request http://www.mecfsforums.com/wiki/Freedom_of_Information_ActRequest_to_HHS_and_NIH_for_copies_of_IOM_contract_and_documents_involved_in_making_the_decision_to_contract_with_IOM


CFSAC TESTIMONIES About IOM Contract 12/11/2013

http://www.mecfsforums.com/wiki/CFSAC_Testimony_Fall_2013


Andrew Bokelman http://forums.phoenixrising.me/inde...meeting-today-dec-11.26972/page-4#post-412040

Denise Lopez-Majano http://speakupaboutme.wordpress.com/2013/12/11/public-comment-by-denise-lopez-majano/

Edward Burmeister http://thoughtsaboutme.com/2013/12/11/edward-burmeisters-december-2013-cfsac-written-testimony/

Gabby Klein http://www.occupycfs.com/2013/12/10/gabby-klein-cfsac-testimony-december-2013/

Jeannette Burmeister http://thoughtsaboutme.com/2013/12/11/my-december-2013-written-testimony/ (written) and http://www.youtube.com/watch?v=GBbZCz6U4ng (video)

Jennifer Spotila http://www.occupycfs.com/2013/12/11/jennie-spotila-cfsac-testimony-december-2013/ (written) http://www.occupycfs.com/2013/12/11/jennifer-spotila-cfsac-telephone-comment-december-2013/ (telephone)

Justin Reilly http://forums.phoenixrising.me/index.php?threads/cfsac-1-2-day-meeting-today-dec-11.26972/page-5#post-412432

Mary Dimmock http://www.occupycfs.com/2013/12/10/mary-dimmock-cfsac-testimony-december-2013/

Sr. Sandra Duma http://www.occupycfs.com/2013/12/11/sr-sandra-duma-cfsac-testimony-december-2013/

Susan Kreutzer http://www.youtube.com/watch?v=bkvOjquSTjY


Statements to IOM Meeting January 27, 2014

Video presentations in the Agenda order: http://www.mecfsforums.com/index.php/topic,19168.0.html


Government

Video: The IOM Process (Rick Erdtmann, Director, Board on the Health of Select Populations) http://www.youtube.com/watch?v=T1gSr9H6Iv0

1:00 – 1:15pm Introduction to Public Session Ellen Wright Clayton, Committee Chair Introduction to Public Session(Ellen Wright Clayton) http://www.youtube.com/watch?v=7qzNXKu7k9k


CFSAC comment to IOM Open Meeting 1/27/2014 presented by Nancy Lee, Designated Federal Officer http://www.hhs.gov/advcomcfs/1-27-2014iom_presentation_transcript.pdf and http://www.mecfsforums.com/index.php/topic,19142.0.html 1:15 – 2:00pm Background and Charge to the Committee Nancy C. Lee, M.D., Designated Federal Officer for the Chronic Fatigue Syndrome Advisory Committee (CFSAC), Deputy Assistant Secretary for Health - Women's Health and the Director of the Office on Women's Health (OWH) in the Office of the Secretary, U.S. Department of Health and Human Services http://www.youtube.com/watch?v=3eXOVyx1vkU Q and A from Committee Nancy C. Lee fields questions from the audience http://www.youtube.com/watch?v=lo6uHFh-gHo


2:30 – 3:00pm NIH/Office of Disease Prevention (ODP) Pathways to Prevention Workshop: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Susan Maier, Deputy Director, Office of Research on Women’s Health (ORWH), U.S. Department of Health & Human Services http://www.youtube.com/watch?v=FzRzCGdN5-o Susan Meier fields questions from the audience http://www.youtube.com/watch?v=1Kv3-X4Ceh0 Transcript: http://www.mecfsforums.com/wiki/NIH_P2P_Presentation_by_Susan_Maier_at_IOM_Open_Meeting_1/27/2014


FDA: The Voice of the Patient 1/27/2014 presented by Sara Eggers http://www.mecfsforums.com/wiki/FDA,_Comments_from_FDA_presented_at_IOM_Open_Meeting_1/27/2014_by_Sara_Eggers Video: http://www.youtube.com/watch?v=Vivu-Y8JEFA


Patients and Patient Groups (alphabetical):

Angel, Bodhee Signed up for 3-minute speaking slot but was not present


Burmeister, Jeannette: http://thoughtsaboutme.com/2014/01/30/jeannette-burmeisters-iom-meeting-comments/ http://www.mecfsforums.com/index.php/topic,19123.0.html Video: http://www.youtube.com/watch?v=09HSYoQVAGc


CFIDS Assn of America, Carol Head, CEO (Let's Get It Right Group) http://solvecfs.org/carol-head-addresses-the-iom-committee/ http://www.mecfsforums.com/wiki/CFIDS_Assn_of_America_Statement_at_IOM_Meeting_1/27/2014 and http://www.mecfsforums.com/index.php/topic,19137.msg158659.html#msg158659


Dimmock, Mary Written statement: https://docs.google.com/document/d/1-oxZpezEVwsD40j41HsOXmwxNNnD2X9MVxXaTGhFs34/edit?pli=1# and http://www.mecfsforums.com/wiki/Dimmock,_Mary;_Statement_to_IOM_Open_Meeting_1/27/2014 Transcript: http://www.mecfsforums.com/wiki/Dimmock,_Mary;_Statement_to_IOM_Open_Meeting_1/27/2014 Video: http://www.youtube.com/watch?v=7ZiQsMOTHWA


Enlander, Derek, MD http://www.mecfsforums.com/wiki/Enlander,_Derek,_MD,_Statement_to_IOM_Meeting_1/27/2014 and http://www.mecfsforums.com/index.php/topic,19112.0.html Video: http://www.youtube.com/watch?v=lorPZQCfVsI


Grobstein, Joan, MD http://www.mecfsforums.com/wiki/Grobstein,_Joan,_M.D._-_Comment_to_IOM_Meeting_1/27/2014 and http://www.mecfsforums.com/index.php/topic,19121.msg158619.html#msg158619 Video: http://www.youtube.com/watch?v=LhaPxpgRsmQ


Holderman, Eileen http://www.mecfsforums.com/wiki/Holderman,_Eileen,_Statement_to_IOM_Open_Meeting_1/27/2014 Video: http://www.youtube.com/watch?v=HKHvjTrPv8g


Keith, Anne http://www.mecfsforums.com/wiki/Keith,_Anne:_Statement_to_IOM_Meeting_1/27/2014 Video: http://www.youtube.com/watch?v=d0HA1nP8G70 http://www.youtube.com/watch?v=d0HA1nP8G70


Kitei, Mindy http://www.cfscentral.com/2014/01/iom-testimony.html#comment-form and http://www.mecfsforums.com/index.php/topic,19139.msg158663.html#new Video: http://www.youtube.com/watch?v=IuumJZ8hkNk


Landson, Joseph https://docs.google.com/document/d/1q-PFslzEEodQnGghnxZWfMiR_rrNb89GBGN9C_NWPgw/edit?pli=1 Video: http://www.youtube.com/watch?v=vG0mbJv7yvU


Lopez-Majano, Denise, speaking on her own behalf and also for her son Written statement: http://speakupaboutme.wordpress.com/2014/01/29/public-comment-provided-to-iom-meeting/ Video: http://www.youtube.com/watch?v=c9VnSzaqGhk


Mass. CFIDS/ME & FM Assn., Charmian Proskauer, Pres. (Let's Get It Right Group) http://www.masscfids.org/advocacy/503-remarks-to-the-institute-of-medicine-committee and http://www.mecfsforums.com/index.php/topic,19160.msg158717.html#msg158717 Video: http://www.youtube.com/watch?v=gghbnL0ww0o


MECFSForums Presentation by Susan Kreutzer http://www.mecfsforums.com/wiki/MECFSForums_Statement_to_IOM_Meeting_1/27/2014 and http://www.mecfsforums.com/index.php/topic,19113.0.html Video: http://www.youtube.com/watch?v=QOjFYHdDJdA


ME Society of America, Maryann Spurgin http://www.mecfsforums.com/wiki/ME_Society_of_America,_Statement_to_IOM_Meeting_1/27/2014 and http://www.mecfsforums.com/index.php/topic,19114.0.html Video: http://www.youtube.com/watch?v=huX1OwCcvCI


Occupy CFS: Spotila, Jennifer http://www.mecfsforums.com/wiki/Spotila,_Jennifer,_Statement_to_IOM_Meeting_1/27/2014 and http://www.mecfsforums.com/index.php/topic,19117.msg158614.html#new http://www.mecfsforums.com/index.php/topic,19117.msg158614.html#new Video: http://www.youtube.com/watch?v=FHCG8OUcxr8


PANDORA (Let's Get It Right Group) http://www.mecfsforums.com/wiki/PANDORA_Statement_to_IOM_Meeting_1/27/2014 and http://www.mecfsforums.com/index.php/topic,19090.0.html Video: http://www.youtube.com/watch?v=FSeLovDaTz4


Phoenix Rising, presented by Gabby Klein http://www.mecfsforums.com/wiki/Phoenix_Rising,_Statement_to_IOM_Meeting_1/27/2014 and http://www.mecfsforums.com/index.php/topic,19116.0.html Video: http://www.youtube.com/watch?v=Vivu-Y8JEFA


Von Salis, Charlotte http://www.mecfsforums.com/index.php?action=post;msg=158604;topic=19114.0 Video: http://www.youtube.com/watch?v=8CqMqbyIcRM


Wisconsin ME/CFS Association Inc.by Mary Schweitzer (Let's Get It Right Group) http://www.mecfsforums.com/wiki/Wisconsin_ME/CFS_Associaton_Statement_to_IOM_1/27/2014 http://www.mecfsforums.com/index.php/topic,19155.msg158702.html#msg158702 Video: http://www.youtube.com/watch?v=R8W1YfO3t6Q


BLOGS, ARTICLES, FORUM THREADS ABOUT IOM

http://www.mecfsforums.com/wiki/Blogs,_Articles,_Forum_Threads_About_IOM

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