In May, we told you about this letter (https://dl.dropboxusercontent.com/u/89158245/DHHS%20Definition%20Initiatives%20May%2012%202013.pdf) to Secretary Sebelius, Dr. Koh, Dr. Friedan and Dr. Collins about the need for an appropriate definition for patients with ME.
More details about the letter and FAQs can be found here (https://speakupaboutme.wordpress.com/2013/05/15/the-time-is-now/ “Of all the issues that we face today, the one issue that has created the most problems are the diverse case definitions associated with our disease. This single issue has severely impacted research, drug development and clinical care and misled the medical community on the very nature of this devastating disease, causing many doctors to not believe that their patients are really sick. Until this issue is addressed, patients will continue to pay the price. This must stop now.”…..)
CALL TO ACTION – A petition (http://www.thepetitionsite.com/255/349/958/fatigue-is-not-a-disease/ ) is now available for signing.
Anyone from anywhere can sign.
Please share the petition widely and encourage others to sign also.
Many thanks to Mary Dimmock, Donna Pearson and Erica Verillo for generating the petition.