Letter writing suggestion to US House of Representatives Path to 21st Century Cures Committee

http://energycommerce.house.gov/cures It might be too late to reply to their request for input, or maybe the community has already tried to tap into this committee...but if not too late, or already done--could we do a group letter or letter campaign to call attention to how the current infrastructure for providing diagnosis and treatment for the ME/CFS population has failed. Everything from CFSACs failure to act on recommendations, CDC refusing to update content and acknowledge PEM, lack of NIH funding year over year, IOM, P2P, FDA not approving ampligen, how Ian Lipkin can get a 31 million dollar NIH grant for translational research, yet has been refused funding twice to study the microbiome in ME/CFS--leaving patient to have to fund the 1 million+ dollars for the study. Seriously, ME/CFS is a posterchild for a system that does not work! Unfortunately I don't have recommendations for solutions except maybe using ME/CFS as a case study of how NOT to provide 21st century care let alone cures.

Showing 3 reactions

  • Mary Ann Kindel
    commented 2014-07-10 11:17:10 -0400
    I posted on their Facebook and they indicated that you could still submit input: We appreciate your interest and welcome your feedback. Please email [email protected] and check out http://energycommerce.house.gov/cures for more information. Please be advised that submissions sent to [email protected] will be made publicly available on our site as part of the effort to encourage continued discussion about opportunities and ideas to accelerate the pace of cures.
  • Mary Ann Kindel
    tagged this with Good 2014-07-10 11:17:09 -0400
  • catherine lynch
    published this page in Suggestion Box 2014-07-09 16:15:57 -0400