Thirty U.S. House representatives signed a bipartisan letter last week urging their colleagues on the House Appropriations Committee to attach language to its report on the fiscal year 2018 budget that encourages the National Institutes of Health (NIH), the Center for Disease Control and Prevention (CDC) and the Department of Health and Human Services (HHS) to accelerate and enhance its work in research and education for ME/CFS.
Thank you to everyone who contacted their representative asking them to sign the letter! Click here to see if your representative signed on. If your representative signed the letter, please send them a note of thanks. Posting on their Facebook page is recommended so that their action will receive public attention.
The Appropriations process will take time so we won’t know whether or not the language for ME/CFS is added to the report until the FY18 budget is passed. (And that depends on whether a full budget is passed this year and not another continuing resolution.) Stay tuned!
The letter recommends adding language to the appropriation committee’s report on the FY18 budget to encourage the HHS, the NIH, and the CDC to accelerate and enhance its work in ME/CFS research and education; to complete a critical multi-year CDC study; to take steps to improve clinical care; and to pursue various targeted actions to more effectively address the needs of a vastly underserved population. See the full language here.
#MEAction’s Congressional team worked with Solve ME/CFS Initiative on securing the bipartisan letter, which was sponsored by House Representatives Zoe Lofgren and Anna Eshoo.
Lofgren and Eshoo also sponsored the bipartisan letter that was sent to the NIH last September asking for an update on the intramural and extramural activities planned for ME/CFS thru 2018. The letter also “encourages the Trans-NIH ME/CFS Working Group to consider in a timely manner the input received through its recent Request for Information (RFI) regarding emerging needs, opportunities, and strategies for ME/CFS research and research training.”
#MEAction’s congressional team had also worked with Solve CFS Initiative (SMCI) and other advocates to secure the bipartisan letter sent to the NIH in September, which was signed by 55 congressional representatives.
In August, we shared with you that we and six other ME/CFS organizations had submitted a proposal to the National Center of Health Statistics (NCHS) to fix the coding of ME/CFS in the US International Classification of Diseases (ICD-10-CM). Today, we are writing with an update on that proposal and asking that you sign the