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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