A number of advovates, including me, would like to see a Congressional Investigational Hearing (a type of "oversight" hearing) into the activites of federal agencies involved with ME/CFS.
This type of hearing acts much like a judicial hearing. Information is gathered (by subpoena if necessary) and federal ageny officials must testify under oath.
In other words, it's a great way of getting the accountability that has been lacking by some who have a great deal of power over our lives and health.
Ideally, a professional lobbyist would do the legwork for this. But sometimes all it takes to get the ball rolling is for one constituent to get the right member of Congress interested.
So, for anyone who wants to put their political power (yes, you do have power, you are a voting constituent!) to work, here are the Congressional Committees that are most likely to undertake such a hearing, with listings of members and their contact information.
Why not take a look and see if your Congressmember or Senator is on one of these lists? If so, contact them and tell them what is (and is not) going on.
House Committee on Energy and Commerce
Subcommittee on Health
Senate Committee on Health, Education, Labor, and Pensions