Advocacy

Important Advocacy Announcement

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Last Updated: 26 August 2016 26 August 2016

More than ever before, 2015 has been a year that has brought fresh hope to Myalgic Encephalomyelitis (ME) patients. The Institute of Medicine (IOM) and NIH Pathways to Prevention (P2P) reports confirmed the neglect and disbelief that have held the disease hostage for decades and strongly recommended action to improve patient care. Publications from Stanford, Columbia and Haukeland (Norway) Universities brought new insights into the biology. World-renowned scientists have joined the fight. Stories about severely ill patients like Ron Davis's son have created more public awareness. And the Tuller series brought greater exposure to the concerns with the PACE trial and psychogenic theories.

For the first time, there is a sense that we have huge opportunities to change the future for ME patients. And just as importantly, there is a sense that if we want to turn those opportunities into reality, then we need to find new ways to work together across the community to increase the impact of our voices.

Read more: Important Advocacy Announcement


More Articles ...

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

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Congress2016 1

Documents used in Congress visits March 2016