Reports and Fact Sheets


#MEAction toolkit

Here is a growing list of reports, fact sheets, and talking points that might be useful in your advocacy. Please note that inclusion does not mean endorsement or agreement on the part of #MEAction’s leadership or membership.

U.S.-focused resources useful for preparing for congressional meetings, agency meetings (NIH, CDC, HHS) and writing articles or editorials:
Films and TED Talk on ME/CFS:
Scientific research on ME/CFS:
  • The Institute of Medicine 2015 report on ME/CFS – a good summary of the research. Also searchable for information on a specific topic.
  • The Big Data Study out of Stanford University shows that the energy-generating process in cells is shutting down in ME/CFS patients.  This means that cell by cell, patients have less energy than healthy individuals, Feb. 2017
  • Fluge and Mella demonstrate that impaired metabolic processes could be causing ME/CFS, Jan. 2017
  • Dimmock, Mirin & Jason show that the disease burden of ME/CFS is devastating, yet doesn’t align with research funding, Dec. 2016
  • Naviaux’s research provides a comprehensive, quantitative demonstration of the metabolomic deficiencies that characterize ME/CFS, Aug. 2016
  • Cornell demonstrates the presence of an abnormal gut microbiome in ME/CFS patients, June 2016
  • Hornig and Lipkin cytokine study showing impaired cytokine levels in ME/CFS patients 2015, March 2015
Popular articles on ME/CFS
  • “Blood simple? A new test may diagnose a mysterious illness and also help explain it,” The Economist, Sept. 2016
  • “Chronic Fatigue Syndrome is in your gut not your head,” Science Daily, June 2016
  • Washington Post article on Whitney Dafoe, Oct. 2015
  • New Yorker article on IOM report, Feb. 2015
  • The Atlantic article on neglect of ME/CFS patients, Oct., 2015
Other key community publications
PACE trial
Scotland
  • Scottish Good Practice Statement on ME-CFS – this set of guidelines informs doctors of the potential adverse effects of graded exercise and the use of cognitive behavioral therapy not as a cure but as a coping tool, similar to other chronic illnesses.
#MEAction Australia

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