More on Steps Toward a Congressional Hearing

One of the best ways to build momentum for a Congressional hearing is to cultivate a relationship with your Representative and Senators, especially those on the committees listed in my earlier blog post.

Groups or individuals can do this by asking for a meeting at their Representative's or Senator's local in-state or district office. Try calling and asking for the staff person in charge of health for such a meeting.

Explain that you have a disease that was investigated by the CDC in the mid-1980s but that federal research into it has been derailed from the original cohort and subsequent pandemic.

Bring some information with you to the meeting that summarizes the situation but isn't overwhelming. Many members of Congress know little or nothing about our disease, or are misinformed. Start making them aware of the politics involved by handing out copies of something like Hillary Johnson's Op-Ed piece in the New York Times:

http://www.nytimes.com/2009/10/21/opinion/21johnson.html?_r=1&pagewanted=all

After the initial contact, it's very important to continue to call, email, and visit and provide more information.

The idea is to keep up a sustained campaign of engagement, even if it is simply a semi-monthly email to the health staffer.

For those who aren't able to get out, I'd suggest calling  and getting the name of Washington, DC legislative assistant in charge of health matters. Then keep in touch by email as outlined above.

Steps Toward A Congressional Investigational Hearing

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
http://www.contactingthecongress.org/cgi-bin/newcommittee.cgi?site=ctc&lang=&commcode=hcommerce_health


Senate Committee on Health, Education, Labor, and Pensions
http://www.contactingthecongress.org/cgi-bin/newcommittee.cgi?site=ctc&lang=&commcode=shelp