Today an announcement went out about a new US Action Working Group which has been formed with the intent of increasing impact in advocacy efforts, with allowance that some of the group’s members can opt in or out of different projects. MEadvocacy was recently invited to join this group.
Our advisors spent several days in communication with the organizations and individuals clarifying the plans involved in defining this group. After much deliberation, we decided we will better serve the ME patients that we represent by continuing as we have in the past, therefore we opted out of the group.
We will continue with our stated mission and pursue our declared goals of advocating for ME criteria (CCC or ICC or better) to be used for diagnostic and research criteria in the US, as well as urging the NIH to fund ME research to the order of $250 million a year which is commensurate with other similarly burdened diseases. This has been our direction from the start; being a voice for the myalgic encephalomyelitis community, with a strong focus on the severely affected.