Journal of IiME Volume 8 Issue 1 Letter from America To get results in Washington, you need to-see-andbe-seen in the daily life there. Letters and petitions do not have nearly the impact as a Washington denizen talking to a decision-maker in person. Happily this would amount to one very visible person, who strolls the halls of Congress, lunches at the clubs and restaurants, like the Cosmos or Metropolitan clubs, or the Monocle Restaurant on Capitol Hill. Once, I was mentioned in the Wonkette blog because I was spotted entering Bistro B, a favourite restaurant of the powerful, and those who think they are powerful. If your children attend one of the power schools, like St. Alban's or Sidwell Friends, contacts can be made and deals can be done at the events. A friend of mine enlisted President Bill Clinton's help for a cause because their children went to the same school. It may strike you as banal, but it is the Washington political game. Learn to play it. Washington is a society of people who are impressed with each other. It is important to be known. If you are invited to the annual White House Correspondents' Association or Alfalfa Club dinners, you are known. The next step is to be known for ME/CFS advocacy. Once known, the perfect advocate/lobbyist will morph into a resource, a voice for others in Washington: a source of information for congressional aides trying to understand the budget requests of agencies, and a source of information for reporters writing about diseases of the immune system. A voice in Washington puts pressure on government agencies to do the right thing, and on members of Congress to authorize and appropriate money. The advocate/lobbyist can learn, through the hearing process, about the diligence and transparency of the agencies and the quality of their operations; to see if they are doing the job or treading water, to see how transparent their operations are and the quality of professionals operating programs. Another salutary source of pressure in Washington is the press corps. It covers not just politics but also the functioning of government. The pinnacle of power in the corps are still The Washington Post, The New York Times and The Wall Street Journal. But the news agencies, The Associated Press, Bloomberg and Reuters, followed by a veritable media army that cover politics and programs, including Politico, The Hill, Roll Call, National Journal, and the specialized medical publications also play important roles. Fifty years ago, the center of media activity was New York. Now it is Washington. A professional advocate for ME/CFS needs to cultivate the media and to be comfortable with the currency of Washington and to trade in it. That currency is information. Washington is a great information market. The successful lobbyist/advocate is, by the nature of the city and its functioning, an information broker. The sums of money that will be needed to accelerate research cannot be calculated and could be very substantial. Research funding, above all, needs to be sustained at predictable levels. The pharmaceutical industry figures that a new drug can cost upwards of $1.2 billion. I mention it only to hint at the vast amount of money needed for drug research and development. How much ME/CFS will need and for how long is an existential question? Money stimulates research, attracts new young minds to the field and leads to success. Right now, there is so little money funding so few researchers in ME/CFS. In the United States, that success may be a long time in coming – too long for those for whom today will be a living hell, as yesterday was and tomorrow will be. I figure that for as little as $1 million, a start toward a Washington presence can be made. That would Invest in ME (Charity Nr. 1114035) www.investinme.org Page 24 of 52 May 2014
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