Congress is home & hosting public meetings

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.  

Town hall meetings typically consist of two parts: your representative will speak for about 15-30 minutes about activities in Washington. Then, your representative will open the floor to questions or comments from constituents.

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

  1. 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. –
  2. 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.
  3. Raise your hand immediately when the Congressman asks for questions. The longer you wait, the more competition you will have for the microphone. –
  4. 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. –
  5. 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.
  6. 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]).
  7. 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 info@meaction 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.

3 thoughts on “Congress is home & hosting public meetings”

  1. If you can’t make a town hall meeting,
    If the format of the meeting excludes you somehow,
    If you speak and want to be more effective…
    March down to the local office of your member of Congress, your representative and senators.
    Meet the local staff. Ask who is the legislative aide in DC that handles the issues you are concerned with.
    Leave a handwritten letter (I’ll explain why below) expressing your concerns that contains the following:
    a. Who you are and enough information to show your roots in the district and state. Make sure they know you are a voter in their district (state for your U.S. Senator).
    b. Tell a story about a person — a real person, a TRUE story — who will be helped or hurt by the outcome of your issue.
    c. Explain what you want specifically: introduce a bill, oppose a bill, modify a law, provide more money… it must be specific and must be within the power of the elected official to do it whether federal or state.
    d. Explain why your proposal is a good idea. How will it help and who will it help?
    e. VERY IMPORTANT Make a specific ask:
    Will you (vote against, vote for, introduce… whatever)?
    f. Leave your letter and ask when you can expect a response. Make sure they know you want a response.
    g. Follow up, respectfully and cheerfully, once a week, until you get an answer by calling the legislative aide. Make a friend.
    Why a letter on paper? Email is universally discounted by people in Washington. They get so many they can’t read them all. Many are from people they don’t represent. Phone calls are just tallied and usually there are about as many for as against.
    To have an effect yout must show the depth of your passion and give them a reason to support your issue. Staff and elected officials know if you write and show up many others feel the same way. Walking into the local office and handing them a written letter carries much more weight because it demonstrates your commitment is deep. They don’t get much writing on paper. It has to be handled, discussed and responded to.
    Marching is great. I marched. But any march will only make a difference if it is a beginning, not an end.
    Town Hall meetings are useful, but some elected officials are managing them to minimize the noise and bother. They want to avoid being escorted out by police and especially want to avoid irritating video that goes viral. So whatever you do, also deliver your own, personal, written letter.
    If you live in a blue district and your legislator agrees with you, find a friend or relative in a red district. Send them this article. Encourage them.
    Politicians must and will listen to their own voters, if you deliver a sensible message they cannot ignore, make an ask and follow up.

  2. Unfortunately the crowd was so disruptive at my representative’s meeting that there really wasn’t a chance to ask questions. My representative is Senator Cassidy and he has met with Ryan Pryor and Carol Head so I was looking forward to the opportunity myself. No doing, the crowd simply wanted to yell at him. Wasted time.

  3. On a related vein: would you like to learn the tools to maximize your congressional impact? The upcoming webinar “Power to the People” from Solve ME/CFS Initiative (scheduled Thursday, March 2, 2017 10-11 a.m. PST) will help you do just that. Targeted to newcomers and seasoned advocates alike. Join SMCI president Carol Head and advocacy and engagement manager Emily Taylor to become part of the movement for change. To register for the free webinar, go here:

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