U.S. House and Senate members are home in their districts for the month of February. Many will be holding public town hall meetings, tele-town meetings (via phone) or events this month. It’s a great opportunity to speak directly to your congressperson at a public gathering about the urgent need of congressional support for people with ME who are being neglected by their government.
Check out this spreadsheet listing representatives and senators who are holding town hall meetings. If you don’t see your representative listed, you can always call their office to inquire about a public event.
Consider sending a proxy (friend or family member) in your place to speak on your behalf if you are too ill to go yourself. Your proxy can always bring a photo of you bed or house-bound as a visual.
Tips for speaking at Town Hall meetings
- Go early and connect with staff. Every town hall meeting is staffed by a senior district or state staffer. Many people think the D.C. staff are the only important players in the policymaking process (including some D.C. based congressional staff). Yet building relationships with staff in the state offices is essential to any advocacy strategy. They have the potential of becoming champions for your cause, as they view part of their customer service role as an advocate for the constituent. – Rollcall.com
- Make sure to have your comment or question prepared in advance. Consider making an “ask” (like pressuring the NIH to provide more research funding for ME). See below for talking points you may consider using to explain the dire neglect of people with ME and how your representative can help.
- Raise your hand immediately when the Congressman asks for questions. The longer you wait, the more competition you will have for the microphone. – Fairus.org
- Bring a friend (or a dozen friends). Nothing says “listen to me” to a politician more than a small mob. While unruly gangs are most unwelcome, having four or five constituents articulating the same cause in one setting can have a strong impact. And, if you can come in matching T-shirts, all the better. No kidding —that will get the rest of the room asking about your group and your issue. –Rollcall.com
- Get someone to record you speaking using your phone (or invite the TV news crew to cover it!) Facebook Live yourself! (Learn how to Facebook Live here.) Check out the TV coverage that #MillionsMissing Canada got when they “bird-dogged” their health minister at a public event and forced her to respond to their questions. They succeeded in getting her to set up a meeting with them to discuss their demands for ME.
- Bring leave-behinds: Give the staff person a one-page summary, including a brief summary of your story, your contact information, and some of the facts you mentioned, including I am one of __________ people in your district/state suffering with ME in the district. Look up the number of people suffering with ME in your representative’s district using this prevalence spreadsheet. (If you need help with this, email [email protected]).
- Be bold! Remember:
ME Talking Points to consider:
The #MEAction Fact Sheet with sources is nearly ready! If you plan to attend an event, please email [email protected] for the updated Fact Sheet that you can give your congressperson.
- Comparisons: ME/CFS strikes up to 1-2.5 million Americans. And people with ME score more poorly on quality of life surveys than patients with multiple sclerosis, stroke, diabetes, renal failure, lung disease, heart failure and various cancers.
- ME/CFS affects XX no. of people in your representative’s district – find the figure in the prevalence spreadsheet.
- The cause is unknown, there is no cure, and there is not even one FDA-approved treatment. Recovery is rare.
- Compared with other diseases with similar impact and prevalence, ME/CFS receives the fewest research dollars from the federal government.
- In 2016, the NIH spent about $2 per patient per year.
- Americans with ME/CFS face a severe crisis in clinical care. There are fewer than 12 ME/CFS expert clinicians in the United States to support the estimated 1 – 2.5 million Americans with this disease.
- The direct and indirect economic costs of ME/CFS to American society has been estimated at between 17 and 24 billion dollars annually, yet NIH has never invested more than $7 million per year on ME/CFS research. This makes no economic sense.
- Likelihood of success: Researchers for ME/CFS have estimated that this disease can be solved in 5-10 years if adequate funding is provided.
Contact with the staffer after the meeting to get information about follow-up:
- Send a thank you note/call to thank them for listening to you during the meeting to remind them of:
- Repeat what you said briefly, including the number of people affected with ME in their district/state;
- Repeat your ask (like pressuring the NIH to provide more research funding for ME).
- Inquire about a follow-up meeting with the congressional representative if you are able/wanting to do so.