The US Action Working Group is an informal group of ME/CFS patients and advocates who communicate and collaborate with one another. We welcome those who feel we can be stronger together and who want to help improve the lives of ME/CFS patients. We focus on actions we can take in the United States, knowing that any progress helps patients everywhere.
NOTE: No sub-groups are active at this time (February 2022).
Sub-groups and other project groups are at the center of our work and are formed as needed or created around a specific project or action. A group has a designated chair. Participants may volunteer to work in one or more sub-groups. Each sub-group will report at each meeting of the full group. Individual participants may also report on any actions they are working on individually or with others outside the US Action Working Group.
Sub-groups are where individual actions are initiated, discussed, and implemented.
For more detail on how sub-groups work, please see the About page.
If you would like to participate in one of these sub-groups, please let us know by filling out the form on the Join page.
A sub-group may coordinate its work with another sub-group, if appropriate.
This sub-group discusses issues regarding how ME/CFS is handled at NIH with a primary goal of rapidly achieving substantially increased research funding for the disease, and may develop actions around specific issues which are then presented to the full group for the opportunity to Opt-In. See an example of an action on the Completed Actions page.
This sub-group discusses issues related to how ME/CFS is handled at CDC. CDC’s work includes a multi-site study intended to clarify the definition, medical education efforts, and epidemiological studies. The group progresses specific actions to advance these issues, with a particular focus on clarifying the definition of the illness and correcting inadequacies and inaccuracies in medical education. Actions taken by the subgroup are presented to the full USAWG group for the opportunity to Opt-In. See an example of an action on the Completed Actions page.
This sub-group plans advocacy actions with members of the U.S. Congress and their staffers (House, Senate, and specific sub-committees, e.g. Appropriations). This sub-group holds meetings jointly with the congressional action arm of #MEAction. There are several ways patients and advocates can participate in this effort. The primary one is to participate in phone or in-person meetings and/or to correspond with their own Senators and Representatives, especially if they are members of committees dealing with Health or Appropriations matters. We are also planning a more active media presence to catch the eyes of Congressional members. In addition, the sub-group does research to make our advocacy more effective, e.g., learning how activists for other diseases were able to garner Congressional support, dissecting government records to be able to make the most effective case for ME, doing statistical analyses, etc. See an example of an action on the Completed Actions page.
This sub-group shares ideas and information about advocacy and legislative actions at the state or local level. These have included getting state or city proclamations, work with state law-makers, local promotional/awareness activities, and distributing information about ME/CFS to health care providers, state departments of public health, and schools/school nurses. Most members of this sub-group are active in their own states. Meeting notes are distributed to the full Working Group.