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Congress

Discussion in 'Advocacy Projects' started by justinreilly, Feb 14, 2011.

  1. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    There needs to be a greater focus on congress, esp the health committees in both chambers. the agency employees will never change unless forced to by congress. One of my senators- Benet is on the health committee. i am, at some point, going to make more contact with his office. Raising money to contribute to a member(s) of congress on these committees would get their ears. I would think this would be a very cost-effective way to increase our chances of success. I mean I would think $50,000 or $100,000 or whatever for this would do us more overall good than that amount contributed to another worthy area like research or doctor education.

    As we all know, there is an insane amount of 'area for improvement' at HHS that congress could force. This is something to which I would contribute as much as I possibly could (even though like everyone, i don't have any money). Think of a one-time investment of tens of thousands potentially resulting in tens or hundreds of Millions of dollars in research every single year (as we should rightfully be getting).

    What do people think?

    --------------------------------

    How You Can Make Your Voice Heard and Help all People with ME



    Two-minute Advocacy:

    Contact your Members of Congress the Easy Way:
    The easiest way to contact your Members of Congress and Health Agencies is to use CAA's advocacy wizard. You just need to put in your contact info and a few words in the middle of their prepared statements. You can just say, for example:
    "I have had this devastating disease for X years. Fund ME/CFIDS now!"

    http://www.capwiz.com/cfids/dbq/officials/
    http://www.capwiz.com/cfids/issues/alert/?alertid=15016826&type=AN



    U.S. Senators

    Phone Numbers, Addresses and Email Webforms for all Senators:
    http://www.senate.gov/general/contact_information/senators_cfm.cfm

    Fax and Email Webforms for all Senators:
    http://www.conservativeusa.org/mega-cong.htm


    U.S. Representatives

    Phone Numbers and Addresses for all Reps:
    http://clerk.house.gov/member_info/ttd.aspx

    Fax and Email Webforms for all Reps:
    http://www.conservativeusa.org/mega-cong.htm

    Websites for all Reps:
    http://www.house.gov/house/MemberWWW_by_State.shtml


    Congressional Committees

    Are you from any of these states or districts? You could make a huge difference!

    Here are relevant Senate and House Committees. If you are from one of these states or districts, pretty please post here or PM me so I can compile a list. You don't have to do much (unless you want to- we need a 'leader' for each district and state from which we have pwME here). You could just do some easy things, like forward pre-written emails to your Member of Congress. This by itself will make a difference! Thanks.

    Senate Committee on Health, Education, Labor and Pensions ("HELP")

    http://help.senate.gov/

    Jurisdiction: http://help.senate.gov/about/
    the Committee is composed of three subcommittees, which have a broad jurisdiction over our country's health care, education, employment and retirement policies.
    Most applicable areas of jurisdiction:
    1. Measures relating to education, labor, health, and public welfare.
    ...
    5. Biomedical research and development.
    ...
    9. Equal employment opportunity.
    ...
    11. Individuals with disabilities.
    ...
    16. Public health.
    ...
    Such committee shall also study and review, on a comprehensive basis, matters relating to health, education and training, and public welfare, and report thereon from time to time.


    Democrats by Rank
    Tom Harkin (IA)
    Barbara A. Mikulski (MD)
    Jeff Bingaman (NM)
    Patty Murray (WA)
    Bernard Sanders (I) (VT)
    Robert P. Casey, Jr. (PA)
    Kay R. Hagan (NC)
    Jeff Merkley (OR)
    Al Franken (MN)
    Michael F. Bennet (CO)
    Sheldon Whitehouse (RI)
    Richard Blumenthal (CT)

    Republicans by Rank
    Michael B. Enzi (WY)
    Lamar Alexander (TN)
    Richard Burr (NC)
    Johnny Isakson (GA)
    Rand Paul (KY)
    Orrin G. Hatch (UT)
    John McCain (AZ)
    Pat Roberts (KS)
    Lisa Murkowski (AK)
    Mark Kirk (IL)


    Senate Committee on Appropriations, Subcommittee on Labor, Health and Human Services, Education, and Related Agencies

    Contact Information
    Majority (Democrats) Minority (Republicans)
    Committee Office: Dirksen Senate Office Building 184 Hart Senate Office Building 123
    Committee Phone: 202-224-7288 202-224-7230
    Committee FAX: 202-224-7914 202-224-1360

    Committee Email: Not Currently Available (Entire Committee)
    Committee Homepage: http://appropriations.senate.gov/sc-labor.cfm (Entire Committee)

    Jurisdiction: http://appropriations.senate.gov/sc-labor-jurisdiction.cfm


    Committee Membership

    Majority Members (Democrats)
    Member Name DC Phone DC FAX

    Tom Harkin (D-IA) [Chairman] 202-224-3254 202-224-9369
    Dan Inouye (D-HI) 202-224-3934 202-224-6747
    Herb Kohl (D-WI) 202-224-5653 202-224-9787
    Patty Murray (D-WA) 202-224-2621 202-224-0238
    Mary Landrieu (D-LA) 202-224-5824 202-224-9735
    Dick Durbin (D-IL) 202-224-2152 202-228-0400
    Jack Reed (D-RI) 202-224-4642 202-224-4680
    Mark Pryor (D-AR) 202-224-2353 202-228-0908
    Barbara Mikulski (D-MD) 202-224-4654 202-224-8858
    Sherrod Brown (D-OH) 202-224-2315 202-228-6321

    Minority Members (Republicans)

    Member Name DC Phone DC FAX

    Richard Shelby (R-AL) [Ranking Member] 202-224-5744 202-224-3416
    Thad Cochran (R-MS) 202-224-5054 202-224-9450
    Kay Bailey Hutchison (R-TX) 202-224-5922 202-224-0776
    Lamar Alexander (R-TN) 202-224-4944 202-228-3398
    Ron Johnson (R-WI) 202-224-5323 202-224-2725
    Mark Kirk (R-IL) 202-224-2854 202-228-3333
    Lindsey Graham (R-SC) 202-224-5972 202-224-3808
    Jerry Moran (R-KS) 202-224-6521 202-228-1265


    House Committee on Appropriations, Subcommittee on Labor, Health and Human Services, Education, and Related Agencies

    Contact Information Majority (Republicans) Minority (Democrats)
    Committee Office: Longworth House Office Building 2358-B Rayburn House Office Building 1016
    Committee Phone: 202-225-3508 202-225-3508
    Committee FAX: Unlisted Unlisted
    Committee Email: Not Currently Available (Entire Committee)
    http://appropriations.house.gov/ind...tTheCommittee.Subcommittees&SubcommitteeId=11

    Jurisdiction: http://appropriations.house.gov/ind...utTheCommittee.Jurisdiction&SubcommitteeId=11
    Most Relevant: Department of Health and Human Services (Except Agency for Toxic Substances and Disease Registry; Food and Drug Administration; Indian Health Services and Facilities; and National Institute of Environmental Sciences (formerly EPA/Superfund)); Department of Labor; Related Agencies: Committee for Purchase From People Who Are Blind or Severely Disabled, ... Medicare Payment Advisory Commission, ... National Council on Disability, National Labor Relations Board, ... Social Security Administration

    Committee Membership

    Majority Members (Republicans)

    Member Name DC Phone/DC FAX

    Dennis Rehberg (R-MT) [Chairman] 202-225-3211 202-225-5687
    Jerry Lewis (R-CA) 202-225-5861 202-225-6498
    Rodney Alexander (R-LA) 202-225-8490 202-225-5639
    Jack Kingston (R-GA) 202-225-5831 202-226-2269
    Kay Granger (R-TX) 202-225-5071 202-225-5683
    Mike Simpson (R-ID) 202-225-5531 202-225-8216
    Jeff Flake (R-AZ) 202-225-2635 202-226-4386
    Cynthia Lummis (R-WY) 202-225-2311 202-225-3057

    Minority Members (Democrats)

    Member Name DC Phone DC FAX

    Rosa L. DeLauro (D-CT) [Ranking Member] 202-225-3661 202-225-4890
    Nita M. Lowey (D-NY) 202-225-6506 202-225-0546
    Jesse L. Jackson, Jr. (D-IL) 202-225-0773 202-225-0899
    Lucille Roybal-Allard (D-CA) 202-225-1766 202-226-0350
    Barbara Lee (D-CA) 202-225-2661 202-225-9817


    House Ways and Means Committee, Subcommittee on Health

    Contact Information
    Majority (Republicans) Minority (Democrats)
    Committee Office: Longworth House Office Building 1102 Longworth House Office Building 1139E
    Committee Phone: 202-225-3625 202-225-4021
    Committee FAX: 202-225-5680
    Committee Email: Not Currently Available (Entire Committee)
    http://waysandmeans.house.gov/Subcommittees/Subcommittee/?IssueID=4615
    Parent Committee: House Committee on Ways and Means

    Jurisdiction: shall include bills and matters referred to the Committee on Ways and Means that relate to programs providing payments (from any source) for health care, health delivery systems, or health research. More specifically, the jurisdiction of the Subcommittee on Health shall include bills and matters that relate to the health care programs of the Social Security Act (including titles V, XI (Part B), XVIII, and XIX thereof) and, concurrent with the full Committee, tax credit and deduction provisions of the Internal Revenue Code dealing with health insurance premiums and health care costs.


    Committee Membership

    Majority Members (Republicans)

    Member Name DC Phone DC FAX

    Wally Herger (R-CA) [Chairman] 202-225-3076 202-226-0852
    Sam Johnson (R-TX) 202-225-4201 202-225-1485
    Paul Ryan (R-WI) 202-225-3031 202-225-3393
    Devin Nunes (R-CA) 202-225-2523 202-225-3404
    Dave Reichert (R-WA) 202-225-7761 202-225-4282
    Dean Heller (R-NV) 202-225-6155 202-225-5679
    Peter Roskam (R-IL) 202-225-4561 202-225-1166
    Jim Gerlach (R-PA) 202-225-4315 202-225-8440
    Tom Price (R-GA) 202-225-4501 202-225-4656

    Minority Members (Democrats)

    Member Name DC Phone DC FAX

    Pete Stark (D-CA) [Ranking Member] 202-225-5065 202-226-3805
    Mike Thompson (D-CA) 202-225-3311 202-225-4335
    Ron Kind (D-WI) 202-225-5506 202-225-5739
    Earl Blumenauer (D-OR) 202-225-4811 202-225-8941
    Bill Pascrell, Jr. (D-NJ)


    House Energy and Commerce Committee, Subcommittee on Health

    http://energycommerce.house.gov/subcomms/subcommittees.shtml

    Jurisdiction: Public health and quarantine; hospital construction; mental health and research; biomedical programs and health protection in general, including public and private health insurance; Food and drugs; and, Drug abuse.

    REPUBLICANS

    Chair - Joe Pitts (PA)
    Vice Chair - Michael Burgess (TX)
    Ed Whitfield (KY)
    John Shimkus (IL)
    Mike Rogers (MI)
    Sue Myrick (NC)
    Tim Murphy (PA)
    Marsha Blackburn (TN)
    Phil Gingrey (GA)
    Bob Latta (OH)
    Cathy McMorris Rodgers (WA)
    Leonard Lance (NJ)*
    Bill Cassidy (LA)
    Brett Guthrie (KY)
    Joe Barton (TX)
    Fred Upton (MI)


    DEMOCRATS

    Frank Pallone, Jr. (NJ)
    John D. Dingell (MI)
    Edolphus Towns (NY)
    Eliot L. Engel (NY)
    Lois Capps (CA)
    Jan Schakowsky (IL)
    Charles A. Gonzalez (TX)
    Tammy Baldwin (WI)
    Mike Ross (AK)
    Anthony D. Weiner (NY)
    Henry A. Waxman (CA)

    _____________________________________________________________________

    (Potentially) Sympathetic Members of Congress:

    Sen. John Barrasso, M.D., Wyoming
    Wrote to NIH about McClure's NIH Panel Appointment at request of Mya Symons:
    http://forums.phoenixrising.me/show...n-Brewer-Executive-Secretariat-Director-N.I.H



    Other Lobbying Contacts:

    FL: David Weldon, MD, former member of Congress and autism/vaccine injury ally, practicing physician,
    730 Malabar Road
    Malabar, FL 32950
    tel: (321) 242-8790:
    http://www.mecfsforums.com/index.php/topic,6850.new.html#new


    Advocacy Resources:

    Congressional Hearing with CDC Chief on ME misappropriations:
    CFIDS Chronicle, Vol. 13 No. 1 Winter 2000
    scroll down to "CDC investigation heat up again"
    http://www.prohealth.com/library/showarticle.cfm?libid=8057

    Communicating with Congress:
    http://www.congressmerge.com/onlinedb/communicating.htm

    Roy Snow's ME Advocacy History:
    http://cfsknowledgecenter.ning.com/forum/topics/unknown-cfs-congressional

    Ken Friedman:
    Fish or War essay: http://tinyurl.com/npqtvp;
    Cort Johnson's interview: http://tinyurl.com/l3y7r4

    Co-Cure archive with advocacy posts:
    http://listserv.nodak.edu/archives/co-cure.html


    Books:
    - Lobbying and Advocacy: Winning Strategies, Resources, Recommendations, Ethics and Ongoing Compliance for Lobbyists and Washington Advocates: The Best of Everything Lobbying and Washington Advocacy [Paperback] Deanna Gelak (Author)
    5.0 out of 5 stars See all reviews (4 customer reviews)
    516 pages; TheCapitol.Net, Inc. (December 10, 2008);
    $47.00
    http://www.amazon.com/Lobbying-Advo...TF8&coliid=I1LY1EQNPBFQN0&colid=29Z789ML6L6CO
  2. eric_s

    eric_s Senior Member

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    I agree, it would be great if we could intensify that kind of effort. Maybe a new non-profit org should be started just for that kind of work?

    Count me in and please keep us updated.

    I think it would be very important if we try to start a fund for this (or anything else) that it's setup in such a way that there is control and transparency. So that every donor can be sure his donation ends up in the right place. What ways are there to ensure that?

    Thanks
  3. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I would be willing to take on this project and contribute substantial (for me) money to it if people think this would work and would be willing to donate some money to it. I would try very hard to put at least $1,000 of my own money into it by selling off possessions like my road bike that i won't be using anytime soon. It can't be non-profit since it is for political activity.

    I agree that any org involved in ME should have as much transparency as possible. How I would do it would be to set up a dedicated bank account. I would keep a running balance of it posted on the web where everyone could see it (along with a ledger with each donation designated as either anonymous or with the donor's name and also with withdrawals/expenses itemized). If the total did not reach an amount that we determined would be cost-effective to give to a political campaign, I would return the donations made over a certain amount (say $50) and pass the rest on to WPI.
  4. WillowJ

    WillowJ Senior Member

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    I like this idea. :)

    Maybe we should pick a Democrat and a Republican as well, to make our effort bipartisan?

    Edit: I feel like just suggesting that brings in politics; I'm sorry, I don't mean to do that. It just seems odd giving to the campaign of a random politician that I don't know and may not agree on any other policy (besides this one exceedingly important issue of we need attention) with.
  5. WillowJ

    WillowJ Senior Member

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    U.S. Senate Committee on Health, Education, Labor, and Pensions:

    Chairman
    Tom Harkin
    (D-IA)
    harkin.senate.gov

    Ranking Member
    Michael B. Enzi
    (R-WY)
    enzi.senate.gov

    Democrats by Rank
    Tom Harkin (IA)
    Barbara A. Mikulski (MD)
    Jeff Bingaman (NM)
    Patty Murray (WA)
    Bernard Sanders (I) (VT)
    Robert P. Casey, Jr. (PA)
    Kay R. Hagan (NC)
    Jeff Merkley (OR)
    Al Franken (MN)
    Michael F. Bennet (CO)
    Sheldon Whitehouse (RI)
    Richard Blumenthal (CT)


    Republicans by Rank
    Michael B. Enzi (WY)
    Lamar Alexander (TN)
    Richard Burr (NC)
    Johnny Isakson (GA)
    Rand Paul (KY)
    Orrin G. Hatch (UT)
    John McCain (AZ)
    Pat Roberts (KS)
    Lisa Murkowski (AK)
    Mark Kirk (IL)


    Bennet is not that high-ranked. Maybe we should pick someone with more pull. Then again, you don't always need the high pull; they sometimes listen to people who just know a lot (Paul Ryan, for example, but then again they neglected to put him on the committee, so maybe that tells us something, too).

    Newer people might be less entrenched in ingrained thinking patterns and have less Capitolitis, so that's something to consider, too.


    U.S. House of Representatives
    Committee on Energy and Commerce
    Subcommittee on Health
    Chair - Joe Pitts (PA)
    Vice Chair - Mike Burgess (TX)

    Jurisdiction: Public health and quarantine; hospital construction; mental health and research; biomedical programs and health protection in general, including Medicaid and national health insurance; Food and drugs; Drug abuse; and, Homeland security-related aspects of the foregoing.

    REPUBLICANS

    Chair - Joe Pitts (PA)
    Vice Chair - Michael Burgess (TX)
    Ed Whitfield (KY)
    John Shimkus (IL)
    Mike Rogers (MI)
    Sue Myrick (NC)
    Tim Murphy (PA)
    Marsha Blackburn (TN)
    Phil Gingrey (GA)
    Bob Latta (OH)
    Cathy McMorris Rodgers (WA)
    Leonard Lance (NJ)*
    Bill Cassidy (LA)
    Brett Guthrie (KY)
    Joe Barton (TX)
    Fred Upton (MI)


    DEMOCRATS

    Frank Pallone, Jr. (NJ)
    John D. Dingell (MI)
    Edolphus Towns (NY)
    Eliot L. Engel (NY)
    Lois Capps (CA)
    Jan Schakowsky (IL)
    Charles A. Gonzalez (TX)
    Tammy Baldwin (WI)
    Mike Ross (AK)
    Anthony D. Weiner (NY)
    Henry A. Waxman (CA)
  6. caledonia

    caledonia

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    With all due respect, I'm not a fan of this idea, or maybe I just don't understand it.

    In the 80's and I think also early 90's, Congress was approached for funding for CFS research. They complied and sent several million our way. The problem is what happened to the money once the CDC and NIH got their greedy hands on it.

    If you've read Osler's Web you should know the story. The money disappeared into other pet projects and the money which actually was spent on CFS was minimal, not to mention focused on psychobabble studies. It's still the same way today.

    There is no oversight on the CDC and NIH and what they do. I think we need to fix what they're doing first before asking for increased funds, otherwise you're just giving Fauci and Unger a nice big present.

    And really, I need you guys to help me with the Drizzle Monthly Donations to the WPI campaign.
  7. WillowJ

    WillowJ Senior Member

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    I think the point is to get someone in Congress to notice the badness of how health authorities are treating us, so they will fire Faucci and call Unger and NIH on the carpet.

    Maybe actually what we need is a lobbyist, who could work on many people in Congress.

    But, yes, WPI needs funding, too. Very much.
  8. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Caledonia,

    I don't know a lot about lobbying, but in theory this would work. How are you going to fix what Fauci and Unger are doing without going to Congress and/or the President and/or creating some huge ACT UP type media circus (all of which I strongly support)? I think we've established that writing letters, testifying and funding the research to the extent we are able doesn't work as well as we need it to.

    I think giving to WPI is a good idea, but only doing that probably only gives us a low chance at getting a cure, i would guess. Look at fully funded diseases that aren't cured- cancer, MS etc. They get hundreds of millions to billions of dollars in legitimate science and they are nowhere close to a cure. It's not bad to have HIV, relatively speaking, but it took them probably $100 or $200 Billion (i don't know exactly, but it is $3B today down from $15B earlier) to get that to be a manageable disease. WPI getting say a few Million a year from us doesn't seem to me to give us anything but a small shot.

    And if the ones of us that are not already on the brink of financial disaster sell all of our stuff and give away all of our savings, just to give that few million a year, that is going to cause a lot of people to eventually totally run out of resources and have no medical care, be homeless, etc. That can not be our only course of action, imo.

    I need feedback and input on this.
  9. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    That's a good point. I am a democrat, but obviously this thing is bigger than me and the our issue is so vital, that to me the political party and stance on other issues is of very little importance compared to the candidates' stance and planned action on this issue. I think we'd be able to work it out somehow. Maybe a person gets one vote per one amount of money and we tally the votes?

    Then there's the added complication of the fact that this is not a quid pro quo so obviously we can't 'comparison shop'.

    I was just saying I was going to try to interest Bennet merely as a constituent, not that he would be a good candidate for a campaign contribution. I have no idea if that's the case.

    Good point that we need to at least consult with lobbyists and perhaps hire one if that makes sense. Obviously we have to be very careful with any money we donate to any campaign or org because we have precious few resources. I assume we have to parcel it out over time very judiciously in order to keep a candidate's interest. Anything like this would be a risk, but it would need to be a very calculated risk; a decision made to do it or not to do it and how to do it after very careful consideration. I, for one, obviously would have to learn a lot more, but I'm putting this out there just to get it out there and get feedback and suggestions.

    Caledonia- some more thoughts: Congress has not done nearly enough for us, but the steps they have taken when we have gotten them to take an interest have all been in our favor to my knowledge. eg. John Porter questioning NIH about Straus' malfeasance (with Fauci coming back hard that Porter needed to back off and unfortunately, he did), Congress uping the amount of money for us despite CDC's resistance to taking more money for ME; Nadler, i believe, calling for the inspector general inquiry which did get us $13M back (though they should have taken the inquiry a lot further); Harry Reid supporting us, but i don't know the specifics of his involvement.
  10. WillowJ

    WillowJ Senior Member

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    I did a search on lobbying and found the following:

    About hiring a lobbyist:
    http://www.alldc.org/publicresources/retain.cfm
    and lobbyist organizations in good standing with this organization:
    http://www.alldc.org/publicresources/lobbyists.cfm
    lots of them, too many for me to look at :)

    how to hire a lobbyist
    http://www.lobbyistfinder.com/lobbying101.aspx
    has this Disability and Health Care lobbyist:
    http://www.lobbyistfinder.com/view_client.aspx?LID=34062
    Josue Larose
    successful lobbying (see page 7, which is more about writing our own letters)
    http://www.bonner.org/resources/modules/modules_pdf/BonCurLobbying101.pdf
  11. WillowJ

    WillowJ Senior Member

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    Yes, while I'm a Republican-leaning Independent, I'm happy to work with people from other parties on whatever issue and I agree that this issue is a lot bigger than most of our other political concerns.

    To just add a second person for whatever reason, might be streching our resources a little thin.

    Hiring a lobbyist, on the other hand, would be more of a quid pro quo arrangement. Money for lobbying for our cause, and nothing else. However it might also be a more ongoing committment? On the other hand, whatever all congresspeople the lobbyist influenced, that influence would remain even if we couldn't keep paying the lobbyist, and we would then know who in the halls of Congress to call to keep up the conversation (and send money to, if we wanted/could).

    What do you all think?

    Mindy Kitei says Reid helped get federal funding for WPI. :) I think he has supported the little bit of funding we get and maybe prevented it from being cut further.

    You can read about Nadler here on Osler's Web.
  12. eric_s

    eric_s Senior Member

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    I'm for this kind of effort. But because i don't live in the USA i don't know enough about how everything is set up and works there, so i can't help much with the details.

    I like both approaches, hiring a lobbyist and getting in touch with a politician directly. Before hiring someone or making a contribution i think it would be necessary to talk to those people and try to get to an assessment what they could do for us.
  13. WillowJ

    WillowJ Senior Member

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    There might be a Health subcommittee on the US House Ways and Means Committee, too. I don't have time to check right now, and unfortunately I will probably be away from the forums for about 10 days.

    Eric, and any other international members... rough outline, our government has three branches which supposely exert checks and balances on each other. Executive is the President and Vice President. Legislative is a Congress divided into two houses, the House of Representatives (states have a differing number of Reps according to population) and the Senate (each state has two Senators regardless of size). Every person has one Rep and two Senators who supposedly represent them and whom they vote on. The third branch is the Judiciary.

    The health departments are agencies authorized by Congress. The Department of Health and Human Services (DHHS or HHS) is the highest branch, and under that are the sister agencies CDC (Centers for Disease Control, infectious diseases and other public health concerns), NIH (National Institute of Heath, health in general), and FDA (Food and Drug Administration), all three answerable to HHS and all four answerable to Congress (and to the President, and in the case of an actual breach of law, to the Courts).
  14. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    These agencies are part of the executive branch under the president. funded by and subject to law created by congress.
  15. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I think trying to get a lobbyist to advise on pro bono or very reduced fee basis would be the best first step. We would probably need to incorporate as a non-profit or have one of the existing ones do this. I don't think any of the existing ones would be a good fit to take this on, though.
  16. eric_s

    eric_s Senior Member

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    I like the idea of having a separate organisation that specializes in that kind of work. Other more patient centered orgs, like the many local, state orgs for example, could then donate to this one. Why not have some "outsourcing" and specialization of organisations, this seems like a smart concept to me, that might help increase quality and make things more clear, who is doing what.
    One for lobbying, political work. One for media work, trying to reach the public. One for research etc. All cooperating.

    We need to build a global ME/CFS "empire". Not joking... A transparent, non-profit, non-corrupt, accountable, good one, but that's about the size we need.
  17. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    According to Jspotila, a senator in the 50s who had a relative with MS was the one who got things changed and moving for MS at HHS. Does anyone know of any politicians or politically connected people who have a relative with ME?
  18. Hope123

    Hope123 Senior Member

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    Tom Sheridan was the lobbyist hired by the CAA and worked with ME/CFS for several years. But, I believe the CAA hasn't worked with him for a few years, not sure why -- cost? effectiveness?

    http://www.sheridangroupdc.com/bios/tom.html

    I think one way to get a politician's attention, if you don't have the $$$ or influence, is to volunteer with their office or when they campaign. I'm too sick to do this though.
  19. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Thanks for the link. It had an endorsement from Kim McCleary that he helped them 'maximize success'. makes me want to laugh and cry.

    I sent him an email to see if we can chat.
  20. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Thinking out Loud

    I took a class in administrative law- the law of admin agencies like CDC and NIH, but sad to say I don't know enough now. The funding power of congress is a big power. an agency can't function without funding. pretty sure an agency can only exist if authorized by congress, so technically it could write a law telling cdc it can't do so and so or even exist, but that is a somewhat cumbersome process (getting a law passed even as a rider) that takes political capital. Congress can have hearings which are very embarrassing to the agency and can order investigations by other agencies like omb as was done in 1999.

    i assume that HHS is part of the executive as the president appoints the cdc head and i believe the hhs secretary is a cabinet member. there are semi-autonomous agencies that are not part of the executive branch though, which would be a huge problem for us, yes. i assume it would be extremely hard to interest the executive, ie president's office in dealing with hhs on this one issue since the president has to deal with so many big issues.

    a project for me to get around to would be to look into all this from a legal point of view. also from a lobbying point of view. hopefully i can get help on looking into the lobbying part. The lobbying may well have been done incompetently by caa over this 25 years considering how they handle things. so the fact that we haven't achieved success doesn't necessarily signal to me we shouldn't look into it more. I guess we need to try to find a pro bono lobbyist to give us some advice. again something for people to look into and ask around about, or i will do it when i can get around to it- maybe not soon.

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