Sunday, February 13, 2011

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

Senate Committee on Health, Education, Labor, and Pensions


  1. Thank you Liz! I have been waiting for someone to start the ball rolling on this, as I have no skills to do anything myself, and my Senators are very anti-ME/CFS and/or accountability. We have a new one here in TX, and i will contact him with hopes that the "newbies" in Congress might be anxious to meet their constituents needs.

    Probably appealing to the HELP and or Commerce committee members themselves might be the way to go, as they instructed the CDC to do more research and with the definition, just last year, wasn't it? Nothing has been done, and the CDC needs to have their feet held to the fire with the new CFS head, Unger.

    Thanks once again...great project!

  2. You're welcome, Kathryn!

    So far, only the Congressional Appropriations Committees have given "instructions" to CDC and other agencies regarding what to do with their federal funding. And that's been through comments in reports accompanying the funding legislation. Unfortunately, such comments do not have the force of law and thus can be ignored.

    Several newly-elected Congressmembers and Senators, noting that there is no money in the federal kitty, have suggested that this is the time to hold oversight hearings and make sure federal tax dollars are being spent wisely.

    So I feel the timing may be good for a bit of a push.

  3. Congressman Jerrold Nadler of NY's 8th District called for the GAO investigation into CDC's misspending the moneyballocated for CFS. He's still there.


  4. Liz,
    I have sent a petition signed by 8700 people which asks for the M.E. definition to be recognized in the U.S. and a request for a congressional hearing to at least 10 members of the HELP committee (including the leader), my senator from Alaska, Obama, Biden, Sebelius, Pelosi, and Clinton, along with various other senators.

    It would help if others pushed their senators into requesting a congressional hearing, as I believe you are right in thinking that now would be a great time to push.

  5. Thank you, Nicky, Mary, and Debbie!

    A bit of history:

    Here is the 80-page GAO report on NIH and CDC CFS programs completed in 2000:

    And here is a summary and review of the situtation in 2005:

  6. Yes Liz great...
    I did go to HELP committee many times...and had Kennedy's ear...then one thing lead to another and then he died.
    So HELP committee is important in this

  7. OMG thank you so such for posting this Liz. NC Senator Kay Hagan is on the Senate Committee of Health. I've been sent her and others the WP ad in the Fax 'Em campaign. I belong to a small local pain, fms group with several members that have me/cfs. Liz pls PM me on facebook to talk. Our meetup group had a candlelight vigil last year, but I would love for them to become more involved in activism.

    Karen Ravitz

  8. Liz, thank you so much. I'm glad to see focus on this. I agree with you about timing. And I very much appreciate the information!


  9. Thank you, Meg, Karen, and Khaly for your feedback!

    I'll be posting a new blog with more tips on getting Congress on board soon.

  10. Awesome Liz!
    In like Flint!
    @ Debbie above: Are you on Facebook??????

  11. Can you tell us more about how the House Energy & Commerce Committee is related to investigations of federal agencies? Some congressmen from my state are on this committee.

    Thanks so much for doing this. (Too bad we don't have a national advocacy organization to do it.)

  12. Flo, the jurisdiction of the E & C's Subcommittee on Health is the critical one. It has jurisdiction (charged with overseeing) public health and biomedical programs among other things.

    However, key to getting an investigative hearing off the ground is having someone -- anyone -- in Congress really taking up our cause and making it a priority.

    So by all means, I encourage you and everyone to educate your Congressional delegation!