ME/CFS City or County Proclamation Guide

awardLocal governments across the United States are standing up to recognize, and raise awareness for, ME/CFS. Here’s a guide to securing a proclamation in your city or state.

May 12, 2016, saw a wave of city recognitions of ME/CFS in honor of International ME/CFS Awareness Day. At least ten different cities stood up to raise awareness and support patients. August 8 is Severe ME Understanding and Remembrance Day and is another great opportunity to get your city or county/parish to join the cause!

For questions or additional guidance, please contact

Emily Taylor
Advocacy and Engagement Manager
ETaylor@SolveCFS.org | 704-364-0016, ext. 209

Step 1: Identify your targets

First, you’ll need to identify who you need to contact. For city proclamations, you will want to target your mayor and the members of your city council. For county-level proclamations, you will want to target your county administrator (which may go by other names, such as “chief executive,” “county manager,” or “administrative services director”) and your local board of supervisors.

A quick Google search of your city/county name plus the relevant office should get you to the correct information.

Step 2: Send in your request

Use the sample letter and sample proclamation below to draft your request. The more personal you can make it, the better. You can estimate the number of ME/CFS patients in your city or county by taking the total population of your area and dividing it by 200.

Sample letter

[Date]

Honorable [Name]

[Official Title]

[Mailing Address]

Dear [Name]:

August 8 is Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS). This day provides an excellent opportunity for our [city/county] to demonstrate its support in raising awareness of this devastating disease and of the numerous patients who are among us. Moreover, it is a wonderful opportunity to educate the public on the seriousness of ME/CFS and the prevalence of this epidemic in our community.

I would be honored if you would sponsor an official proclamation to recognize August 8 as Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis. Your proclamation would lend official recognition to the important work of educating the public on ME/CFS as well as emphasize your personal commitment to ending this disease. I have enclosed a sample proclamation that may help your office compose the appropriate proclamation for our [city/county].

[Write a short paragraph about how ME/CFS has impacted your life.]

If you or your staff have any questions concerning the request, the sample proclamation, or ME/CFS, please visit www.solvecfs.org or call me at [telephone number]. I will follow-up with your office on this request in the next few days. As always, we appreciate your support of ME/CFS and our community.

Thank you for your consideration on this special request.

Sincerely,

[Name]

Enclosure

Sample proclamation

Certificate of Recognition (or Proclamation, or….)

is hereby presented to (for)

Myalgic Encephalomyelitis, Chronic Fatigue Syndrome Awareness Day (or Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis)

WHEREAS, Myalgic Encephalomyelitis (ME), sometimes called Chronic Fatigue Syndrome (ME/CFS) is a neurological and/or neuroimmune disease characterized by overwhelming fatigue, “brain fog,” pain, post-exertional malaise, headaches, cardiac symptoms, immune disorders, dizziness, balance problems, increased morbidity, and eventually high suicide rates due to neglect, and it is perhaps the most common chronic disease causing students to drop out of high schools and colleges, sometimes indefinitely; and

WHEREAS, these illnesses affect men, women, and children of all backgrounds. Once diagnosed one is often ill for years or a lifetime, and most never recover fully; and

WHEREAS, over 20 million individuals worldwide, 2 million in the US, perhaps [population / 200] in city (state, county, country…), are afflicted by the above chronic neuroinflammatory illnesses; and

WHEREAS, the economic impact of ME/CFS is estimated to be approximately $20-50 billion dollars per year (CDC Feb 2016, Grand Rounds); and

WHEREAS, awareness will lead to increased NIH and private funds for R&D and necessary services to end the decades of misplaced stigma and discrimination that accompanies these medical diseases:

NOW, THEREFORE, I, [Mayor, City Council, Chief Executive… name], mayor of the city of [City name], do hereby proclaim May 12, 2016, Myalgic Encephalomyelitis, Chronic Fatigue Syndrome Awareness Day (or Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis) in order to help spread awareness of the disease and the need for early diagnosis and to support individuals living with Myalgic Encephalomyelitis, Chronic Fatigue Syndrome.

Step 3: Follow up with your contacts

After you submit your letter and sample proclamation, you should make a follow-up phone call with the office to confirm they have received your submission. Often, they will have misplaced it and you will have to send it again. Once you have confirmed they have received the request, follow up with a respectful request for the status of your request about once a week. Eventually, your request will be denied, scheduled, or granted. The administrator will give you appropriate guidance about picking up your proclamation.

If you or fellow advocates feel well enough, you can also schedule to have the proclamation presented to you at a city council (or similar) meeting to gain added exposure to the full city council and their audience. Ask to schedule this, and see if you can perhaps have a few minutes to tell attendees how this disease has personally affected you or people you know. If possible, have someone take a photo.

Step 4: Send your thanks, and let us know you were successful

Once you have successfully secured your city or county proclamation, please contact Emily Taylor of Solve ME/CFS Initiative at the email address above to let us know about your success! Send us a picture of your proclamation (or a PDF), and we will add your city to a growing list of cities and counties that are joining the cause. You can see a list of current cities here: http://me-pedia.org/wiki/United_States_proclamations.

Also, be sure to thank your local government official. Below is a sample thank you letter:

Sample thank you letter

[Date]

Honorable [Name]

[Official Title]

[Mailing Address]

Dear [Name]:

On behalf of all who suffer from Myalgic Encephalomyelitis, also known as Chronic Fatigue Syndrome, I’d like to take the opportunity to thank you for recognizing [exact phrasing from the proclamation] in [City, State].

Without the support and recognition of elected officials, the ME/CFS community’s daily battle with pain and fatigue would go unnoticed. With an estimated 2 million Americans suffering from ME/CFS, we must strive to continually raise awareness and support. It is only with this kind recognition that we will be successful in securing research funds, medical education, and community acceptance. Your action has made a positive impact in making ME/CFS understood, diagnosable, and treatable.

Thank you again for joining us in this cause.

Sincerely,

[Your Name]

For questions or additional guidance, please contact

Emily Taylor
Advocacy and Engagement Manager
ETaylor@SolveCFS.org | 704-364-0016 x 209

Current U.S. Proclamations

Arizona


California


Michigan


Texas


SMCI would like to extend special thanks to Mark Camenzind, Harvey Carden, and Marilyn Yu for their strong advocacy and leadership in organizing and coordinating this project.