Advocacy

Documents for visits to congress March 2016

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Last Updated: 17 March 2016 17 March 2016

MassCFIDS ME/CFS Fact Sheet

MassCFIDS one-pager for Congress

Suggested language for Appropriations bill

Sample letter to Appropriations Committee

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  1. Petition to the Agency for Healthcare Research and Quality (AHRQ)
  2. Important Advocacy Announcement
  3. Does Advocacy Work, P2P Edition - Good News and Bad News
  4. Response from Office of Disease Prevention April 14 2015
  5. What is your response to the IOM Report? What were your earliest symptoms of ME/CFS?
  6. Update on CDC funding for ME/CFS
  7. LETTER TO P2P WORKGROUP MEMBERS FROM MECFS PATIENT ORGANIZATIONS August 2014
  8. Remarks to the Institute of Medicine Committee
  9. Open letter of September 23, 2013 to Kathleen Sebelius
  10. Join advocates to request CPET, NK cell and viral testing in CDC multi-site study
  11. FDA Webinar on Advocacy
  12. Update on ME/CFS Patient Alliance meeting of Oct. 18 with Dr. Nancy Lee
  13. Summary of the Patient-Focused Drug Development Initiative
  14. FDA Patient-Focused Drug Development Intiative - Sample Letter (by November 1, 2012)
  15. Patients are urged to recommend CFS/FM for the FDA’s Patient-Focused Drug Development Initiative
  16. CDC Response to Massachusetts CFIDS/ME & FM Association
  17. Dr. Gurwitt's Statement for the October 2012 CFSAC Meeting
  18. Position Paper to CDC on CFS Toolkit and IACFS/ME Primer
  19. DHHS Response to Joint Request for Action prompts second letter
  20. Joint Request from the ME/CFS Community for Action - Positive Response from the FDA

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Documents used in Congress visits March 2016