State Resolution for ME: How-to Guide and Case Study


Rivka Solomon and Mary Dimmock contributed to this article

This document includes the steps ME advocates are taking to get a State Resolution for ME passed in their State House (aka State Assembly or State Legislature). It also includes a draft template of a resolution for you to use in your state.

Why pursue a state resolution?

A state resolution, though non-binding, can be a useful tool for advocacy. A resolution can raise awareness and reduce stigma with the lawmakers in your state. If a legislator has family with the disease or other experiences with ME/CFS, the resolution can help you identify that future ally.

Remember, state lawmakers sometimes become federal ones, so getting a sympathetic ally on the ground floor is invaluable. Also, a resolution is a form of governmental validation. This is useful when courting Congress as you have proof that other legislators have taken the disease seriously. Your resolution can be useful to advocates in other states trying to take similar action. We used the fact that a neighboring state had already passed a neuro-immune resolution to encourage a representative to help us.

Once your legislative body has voted on the resolution, you have representatives or senators on the record as supporting the disease. When you return to them for support of future actions, the resolution can be a helpful reminder that they have already taken a stand for ME.

We learned there are two types of resolutions: Privilege and Urging (jargon may vary between state houses). A Privilege Resolution has less oomph but is easier to pass as it does not have to go through the legislative process. It is announced on the floor but does not require a vote to adopt it. An Urging resolution has greater weight and goes to a vote on the floor of the chamber. However, an Urging resolution has to pass through committee and rules. The more steps a piece of legislation has to take, the more chances it has to flounder. However, it also gives you and your community the opportunity to educate lawmakers on the issues. So be clear with your lawmaker what kind of Resolution are you pursuing and why they think that is advisable.

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How-to Guide

1. Connect with advocates who have gotten a state resolution:

I spoke with ME advocate Tina Tidmore about her experience getting a neuro-immune resolution passed in the Alabama State House and Senate (2013). Both Tina and I are happy to help if you also embark on this process. Email: Timbrelivesay@gmail.com and Tina@TidCom.net  (FYI: Tina’s resolution was for neuroimmune illnesses, and our State Resolution is for ME.)

2. Research ahead of time:

  •  Check your State Legislature’s calendar. When is it in session and on break? You will probably need to prepare the groundwork during a break to be able to introduce a resolution when they are in session.
  •  All State Houses have a health committee (perhaps called the HHS committee). Identify all the state legislators (elected officials) sitting on State health committees. Do this for both the House and Senate sides of your State Legislature. This info can be found on your state’s General Assembly website.
  • Identify the state legislators who will advocate for ME and can be part of your team.

3. Get help from a lobbyist?

Consider calling a state lobbyist for a one-time, free consultation or an ongoing pro-bono arrangement. Ask him/her which State House legislators are good for you to approach (i.e. who is likely to introduce a State Resolution on ME), and how best to approach them.

Ideas: Approach a young state legislator who does not yet have a pet cause, or approach a member of the health committee who has been successful with past pet projects.

4. Learn from others’ experience. 

Read the case study below. Also, check out this article on how one group of advocates got a State Proclamation in Massachusetts.

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Case Study: Georgia

The steps that Georgia activists took to secure a State Resolution for ME
  • Strategized with state lobbyist (a friend who volunteered after attending the first #MillionsMissing demonstration) about ways to engage legislators for our upcoming #MillionsMissing protest planned for our State Capitol.

    (Lobbyist stated that the success of our bringing advocacy directly to state politicians was contingent on dropping the word “protest” from our action, and instead framing the action as an Awareness Day. She stressed this to us many times throughout the process, politicians will not be associated with anything that rings of protest.)
  • Created a core team of advocates: We are a mother of a patient; a long-time advocate and documentarian; a new advocate with a wheelchair (a physical representation of invisible disease); and our volunteer, state-level lobbyist.
  • Team discussed goals for potential meetings with state legislators (keeping goals focused on the state level). Our goals: Explain the disease, introduce a State Resolution for ME and invite legislators to attend our (#MillionsMissing) Awareness Day.
    FYI: We agreed to use the name “ME/CFS” due to past and current interactions with government entities in our state and state legislators.
  • Found State House representative with an already-established connection to our team (one advocate’s parents had gone to “constituent coffees” with him). State Rep. X is young, relatively idealistic, motivated and with no current pet project.
  • Via the advocate’s parents, we gave State Rep X the “Forgotten Plague” DVD, an action plan for introducing an ME/CFS Resolution and a draft of the proposed resolution. We asked if he’d consent to help. (Other states may not want to bring an already-written action plan but rather create one with their elected official’s staff after they consent to be on board.)

    We used a draft copy of a congressional resolution and the 2013 Alabama NEIDs State Resolution to create a new draft specific to our state. Emailed State Rep. X for his approval.
  • Once State Rep. X was fully on board, we set up a meeting with the chair of the State House Health Committee to meet with ME advocates. (State Rep X could not attend, but gave permission for our lobbyist to use his name as fully committed to our team’s goals). We also did this with the chair of the Senate’s State House Health Committee.
  • Prepared info. packets for upcoming meetings with the two chairs. See below for links to materials you may want to use to prepare for the meeting and/or bring to the meeting. They contained: proposed draft of resolution on ME Awareness, our state’s prevalence chart, IOM (now the NAM) report brief, Atlantic magazine article (of 2015), #MEAction fact sheet, Blue Ribbon Foundation info, letter written by team of scientists to Senator Mikulski in 2015 (saying they want to work on ME) and state specific fact sheet on ME, as well as copies of “Forgotten Plague” DVD.
  • Our team met to go over the backgrounds of each chair and learn their past work on health and/or human services issues. We also clarified our meetings’ goals and agendas. Our agendas were: Thank elected officials for meeting us; explore their pre-conceptions of “CFS” (this is a very important step, don’t neglect it); develop empathic understanding of ME/CFS; explore ways they can help; discuss State Resolution; invite them to our Awareness Day; thank effusively for meeting with us.
  • Just prior to meeting the chairs we emailed a copy of the draft resolution and a clip of “Forgotten Plague” to their assistants.
  • Lobbyist contacted State Senator to get a feel for her preconceived ideas about “CFS,” getting misgivings out on the table.
  • Prepared additional handout on ME and CFS medical coding/billing issues that State Senator noted as barriers to medical interest in our disease (she had worked as a nurse and in insurance industry, so she knew this world).
  • At meeting with Senate HHS Chair:  We explored her perceived barriers regarding moving ME forward on the state level (i.e. the declining state of general health care, lack of state funds, and other issues including the difficulty of changing medical education curricula and the general stigma of CFS).
    We respectfully countered her negative perceptions, focusing on economic impact, personal devastation of disease, lack of diagnosis and tracking of patients. After she expressed her (inaccurate) understanding of CFS as a catch-all garbage pail diagnosis, we corrected her misperceptions and explained the medical specificity of ME. Lobbyist highlighted that a similar resolution had passed in Alabama. We also explored state level processes to get ME/CFS continuing education (CEs) to medical professionals.
  • At meeting with House \ HHS Chair:  She was more receptive and empathic. After covering intro and explaining biologic nature of ME, she turned her attention to how she could help. Suggested we convene a small panel of ME/CFS experts and have them present at one of her early 2017 Health Committee meetings, thus ensuring quick passage through committee once the resolution is actually introduced. She asked us to pursue an official State calendar Awareness Day (in addition to our ME advocate-backed #MillionsMissing Awareness Day). She also linked us to someone who might help with press once the resolution is moving forward.
  • Team wrote thank-you emails, followed up with articles appropriate to discussions held.
  • The following week, lobbyist briefly touched base with all three State Legislators we had worked with (the two Chairs and State Rep. X).
  • Once calendar date was set for first Committee meeting of 2017 session, Chair agreed we could present at that time. We invited an ME/CFS researcher to join our presentation as well as representatives from CDC. (The CDC as a federal agency needs an official invite to interact with a state govt agency. They had never been to the GA Capitol or Health committee before, and appreciated the link.)
  • We wrote statements and prepared visual aids – handed out fact sheet specific to our state as well as national issues, lapel pins (expensive, don’t do). We also showed a clip of “Forgotten Plague” with Whitney Dafoe and Ron Davis. We had intended to display the disease burden vs funding chart but ran out of time.
  • After the presentation we spoke directly with Reps and others who work at the State Capitol and have had the disease impact their lives. These contacts will be invaluable for our future work.
  • The lobbyist approached legislators in attendance about their reactions. We learned we needed to shorten our presentation and keep strongly to the facts. Using the emotional clip showing how bad the disease can get did not impress several of the reps. They prefer hearing about the science and epidemiological facts.
  • We held a meeting with the Chair and the CDC representatives who attended to discuss the need for medical education in Georgia.
  • Sent handwritten thank-you cards to chair and lobbyist. Followed-up a week later with shortened version of Resolution per her request, with changes also reflecting post-presentation meeting and action plan developed.
  • Future plan: Will possibly hold another ME Awareness Day during a future State Legislative session to reach more state legislators. Renting space in a Capitol building tends to be relatively inexpensive. Will utilize Resolution to introduce state agencies to the issues of ME. Will use Resolution to in Congressional advocacy work. Will pursue city proclamations.

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Materials to prepare for your meeting/ Resources to bring:

Visit the Reports & Fact Sheets page on #MEAction for an updated version of our:

  • Fact Sheet
  • Congressional one-pager
  • Prevalence spreadsheet that shows the number of people in your state with ME
  • Scientific articles
  • Popular articles on ME/CFS  

 

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STATE RESOLUTION for ME

(Template)

Whereas, Myalgic Encephalomyelitis (ME), also known as Chronic Fatigue Syndrome (CFS), has been found by the National Academy of Medicine (NAM) to be “a serious, chronic, complex, and systemic disease that frequently and dramatically limits the activities of affected patients” leaving them with a lower quality of life than multiple sclerosis, stroke, renal failure, heart failure and other chronic diseases; and

Whereas, between  xxx and xxx <name state here> residents of all ages, races and sexes are believed to be afflicted with ME, with an estimated 836,000 to 2.5 million Americans afflicted and 17 million worldwide; and

Whereas, ME persists for years or decades because of a lack of treatments, leaving one quarter of patients housebound or bedbound, with many students unable to attend school and 50-75% of patients unable to work at an annual cost to <name state here> of $xx million to $xx million in medical expenses and lost productivity; and

Whereas, the National Academy of Medicine noted a lack of knowledge about the disease due to a “paucity of research” and “remarkably little research funding,” and concluded that “more research is essential”; and

Whereas, the National Academy of Medicine noted that the medical community “generally still doubts the existence or seriousness of this disease” and patients have difficulty getting diagnosed or accessing quality medical care;

Now, therefore, be it

Resolved, that the House [or Senate, or both] —

(1) Recognizes that ME is a tragic, disabling disease that destroys the lives of many patients and imposes a severe toll on their families, friends, and caretakers;

(2) Recognizes and affirms the commitment of <name state here> to improving the availability and quality of medical and supportive care for ME patients;

(3) Recommends that the National Institutes of Health (NIH) funds ME research at a level commensurate with similarly burdensome diseases;

(4) Encourages universities in <name state here> to focus research attention on this underserved disease;  

(5) Recommends that the Centers for Disease Control (CDC) disseminates new ME medical education, updated in accordance with the National Academy of Medicine recommendations, the recommendations of the U.S. Department of Health and Human Services’s (HHS) own CFS Advisory Committee, and the best practices of disease experts;

(6) Encourages media organizations to inform the public about the seriousness of this disease.

 


Categories: Actions, Awareness, Featured actions, How-to guides, How-to Guides, Policy, Uncategorized, United States

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