Hi Justin et al As a non American this thread struck me as odd, because I have always assumed that political lobbying was an instrumental part of the political landscape in the US. Consequently, I thought that the CAA would have been doing that already. From the little understanding I have on lobbying, it appears that this is the only way to get the dollars needed to fund research etc and that certain health groups spend super huge sums on the political lobbying process (and all the little incidentals it entails), having a full time presence at Washington etc. I also understood though, this takes serious money. I think it is an important strategy and can serve short and long term goals. You might need to find a generous benefactor to back this. Start small though and grow. A worthwhile project. Can I ask, in an ideal world where you had this money and the ear of politians - what would you be immediately lobbying for? As someone in this thread pointed out - money to the CDC etc never really helped the cause. What do you think would and would make the difference? ISO
I think Roy here did lobbying and has posted about it, in the old days. I think we would need to define goals first, how to be different from the CAA?
I agree that lobbying is very important, even fundamental, especially for us who are getting a less than satisfactory governmental response to this pandemic. I don't know a lot about lobbying, so I am hoping we can get more feedback from anyone who does. Yes, we should have an advocacy org that has a full-time presence in DC which is actually lobbying for us. I assumed this was happening until I started participating in these forums. Obviously this hasn't occurred since CAA is useless. They have had lobbyists off and on. They have one now. I don't know the details of what they have done; it doesn't seem like much since CAA doesn't discuss it and look at the results we have. CAA goes up to DC for a couple of days in May and talks to some congressional offices. Pathetic. And now they claim they are abandoning advocacy (though hedging a bit on this). So we have PANDORA which is small and does a little lobbying for a few days a year and isn't as aggressive as I'd like (but better than CAA). PANDORA has mostly focused on the local Florida situation, though this may be changing. There is a big vacuum. Noone is doing anything. Roy was a volunteer lobbyist who moved to DC for a few years until the money and what little health he had ran out (as I remember it from his post). I would concentrate on getting money to NIH for valid biomed studies. They haven't done any studies with fake definitions (like Oxford and Reeves) to my knowledge so some of the studies they have funded have been useful. Also this is something easy for anyone to understand- there is a gap that must be remedied- we get $3M while other similar diseases get $200M- $3B per year. I would also ask that the CDC program be shut down (and have NIH look after the disease if possible) or have Unger replaced by a bona fide leader (Komaroff, Whittemore, Peterson, etc etc) That would be the most simple thing for Congress to do in the face of CDC's informal and formal resistance to Congresses' directives. Of relatively less urgency would be a congressional investigation into CDC and NIH malfeasance and nonfeasance. And direction to HHS secy Sebelius to implement CFSAC's recommendations. The bottom-line is that, unless we get lucky with the limited amount of research a patient-funded WPI can do, we will not be able to make any real progress for decades more. Cancer, MS and other diseases funded in the hundreds of millions to billions of dollars a year are still looking for effective treatments. AIDS has made good progress, but it has been funded at $3B - $15B per year for a quarter-century. We need to leverage our meager resources by getting media to cover ME and getting Congress to act. My very weak understanding is that obviously money talks in congress, but if you have a sufficiently strong 'human interest'/ injustice story, like us, you may be able to get some traction. We'd need money too. I don't know how we'd raise it other than soliciting as one does for WPI, ie making the case to patients and others willing to listen and repeating the message. A PAC or non-profit org would have to be set up to handle and direct funding.
Here is former volunteer lobbyist Roy Snow's story: http://forums.phoenixrising.me/showthread.php?2508-the-former-CFS-lobbyist-s-tale
Anyone from Wyoming? Senator Barrasso's office from Wyoming has been responsive to forum member Mya's correspondence. His office wrote to NIH about Dr. McClure being on the NIH panel. NIH's letter back was shameful, imo. Mya is willing to continue to contact him. Are there any other people from Wyoming? (even people willing to just sign on to pre-written group emails to the Senator; no travel or speaking or writing required). You could really make a difference! Please see thread: http://forums.phoenixrising.me/show...n-Brewer-Executive-Secretariat-Director-N.I.H.
Do you live in these states or districts? You can 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. I will also put this up as a resource list in the first post on the thread. Senate Committee on Health, Education, Labor and Pensions ("HELP") http://help.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) Senate 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 WWW Homepage: http://appropriations.senate.gov/sc-labor.cfm (Entire Committee) Parent Committee: Senate Committee on Appropriations 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 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) Committee WWW Homepage: http://appropriations.house.gov/ind...tTheCommittee.Subcommittees&SubcommitteeId=11 (Entire Committee) Parent Committee: House Committee on Appropriations 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 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) Committee WWW Homepage: http://waysandmeans.house.gov/Subcommittees/Subcommittee/?IssueID=461 (Entire Committee) Parent Committee: House Committee on Ways and Means 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)
