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CDC - 2011

In 2011, our organization and others sent a letter to the CDC urging the new head over CFS research to take that department in a different direction. We also set up a petition to motivate them to act.

Areas Where Action is Still Needed:
  • Change the name of the disease to one that does not confuse it with other conditions.
  • Use the CDC influence to help set up federal centers of excellence for research and clinical care.
  • Request Congress allocate more funds toward ME/CFS research.
Last update: August 20, 2014
CDC's Response to Needed Changes Listed in the Letter:
  • Have meetings with patients - The CDC has had meetings with ME/CFS patient organizations and continues to have phone conference meetings where they answer patient questions about their ME/CFS research.
  • Meet with and collaborate with known ME/CFS experts - The CDC is now working with known ME/CFS researchers to better define ME/CFS. They are also attending conferences with other ME/CFS experts.
  • Come up with a better diagnostic criteria based on the expertise of known clinical experts - The CDC initiated the Multi-site Clinical Assessment project to determine the best way to define the disease.
  • Improve physician knowledge of the disease - The CDC has created a CME course on MedScape and is working with MedEd to increase instruction of this disease in medical schools.
  • Study the biological abnormalities and connection to viruses - The CDC is now researching neurological abnormalities, exercise-induced abnormalities and connection to infection in ME/CFS.

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