FMS Awareness
The idea of Awareness Day began in 1992. The date of May 12th date was chosen to honor the birthday of Florence Nightingale, the English army nurse who was a pioneer of the Red Cross Movement. Nightingale was virtually bedridden with a painful and fatiguing illness resembling FM and/or CFS/ME, yet went on to inspiring accomplishments, including the founding of the first School of Nursing.
One of the most difficult aspects of having FM is that most of the symptoms are invisible, which makes it hard for others to understand what living with this debilitating illness are really like. That's one of the reasons why FMS Awareness is so important.
I've listed some ideas below to help you to increase awareness in your area.
How To Raise Awareness
Write, call or visit your Congressional representatives. If you don't know who they are or how to contact them, visit our Advocacy Links section.
Organize a support group member project.
Take copies of your advocacy letter to your support group meeting. Other group members can either copy the letter by hand or use a photocopy of your letter.
Make and bring copies of the enclosed FMS
Fact Sheet, which explains what FMS who gets it and how it's treated.
Ask each group member to bring at least one envelope and one first-class stamp to the meeting.
Have each person place the letter and the FMS Fact Sheet in an addressed envelope, seal it, stamp it and then mail all the letters at once.
Start this process early! You want to have lots of time for your elected officials to receive your letters.
Set up a display in your local library for the week of May 12th or the month of May. This can be done by the librarian with your suggestions on what information should be included in the display.
If members of your support group can manage some time at the mall, you may wish to set up a display there.
Consider asking your place of worship to include a notice about the significance of May 12th in its worship material.
Place a classified ad in your local newspaper.
Contact the health reporters at your local TV and radio stations, newspapers and magazines regarding FMS Awareness.
Mail your letters or call the reporters early. Program directors often plan ahead and since May is a TV and radio ratings month, they are busy preparing feature stories now for broadcast in May.
Designate someone as your group's spokesperson, so the media has a contact for stories.
ADVOCACY INFORMATION
In 1993, not a single project on Fibromyalgia (FM) was funded by the National Institutes of Health (NIH), the branch of the U.S. government that oversees awards for biomedical research. Today, an estimated $10 million is spent on FM by the NIH each year,
Many inroads have been made, but there is still a great deal of work to be done. While you may think that you are just one person and your voice is too small to be heard, this is not true! In fact, it is essential that you write to your elected officials and to the NIH. The greater number of people who write (snail mail and e-mail) and call, the more impact we have. Writing an advocacy is relatively simple.
It is important to remember that legislative assistants receive thousands of letters, so it is very important that your letter is clear, concise and to the point. The following information will help you to write your own advocacy letter.
Advocacy Links:
U.S. Department of Health & Human Services
The Center for Disease Control (CDC) office of Science Quality
Centers for Disease Control and Prevention
National Institute of Arthritis and Musculoskeletal and Skin Diseases
Office of Rare Diseases Research
NIH - NIND - Office of Neurological Disorders and Stroke
NIH - NIAID - Auto immune Diseases
NIH - Pain Consortium - Contact NIHPainInfo@mail.nih.gov
NIH - Pain Research Coordinating Committee (Will take comments and questions)
The American Osteopathic Association
The American Civil Liberties Union
Your State’s Insurance Commissioner
Practical Pain Management: The Comorbidity of Chronic Pain and Mental Health Disorders
American Psychological Association
National Board of Certified Counselors
American Association of Suicidology (202-237-2280)
National Suicide Prevention Lifeline (800-273-8255)
Suicide Prevention Resource Center
FIBROMADNESS uses its day-to-day work for and with patients to inform our public policy agenda. The FIBROMADNESS GOAL has two main goals: to redefine the definition of "disability" to include chronic illness; and to ensure that public policy debates about health care and health care finance reform include the voices of patients with chronic diseases.
When the disability rights community did the incredible work they did to arrive at the Americans with Disabilities Act (ADA), they and Congress were thinking about people in wheelchairs and other visible disabilities. However, we know that the ADA was not designed to help patients with chronic illness who need flexible work hours, work at home, and other accommodations that affect our presence in the workplace. In fact, the courts have interpreted the ADA to provide NO protection from termination of employment due to absence from the workplace. This must change if the needs of patients with chronic illnesses are to be met.
Second, FIBROMADNESS GOAL is committed to participating in the public debate over health care and health care financing reform. Since patients with chronic diseases have more interaction with the health care system than any other group of people, if there is to be meaningful health care reform, patients with chronic illnesses must have a place at the table. Right now, that is not happening. FIBROMADNES has created The FIBROMADNESS Project as our public policy arm so that we can put out the word that patients with chronic illness have specialized needs that must be met in order for meaningful health care reform efforts to succeed.
The following organizations are working on important health care reform projects:
• Health Law Advocates - fighting for health care reform
• Community Catalyst - Consumer organization working for health care reform
• Families USA - the voice of the health care consumer
• Disability Rights Education & Defense Fund
Health industry
MGMA - Medical Group Management Assn., the primary medical group practice trade organization
VHA - nationwide cooperative network of community-owned health care systems
The Leapfrog Group - coalition of public and private organizations that provide health care benefits, focused on health safety
AHIP - America's Health Insurance Plans (formerly Health Insurance Assn. of America)
PhRMA - the Pharmaceutical Research and Manufacturers of America, representing major research-based pharmaceutical and biotechnology companies
To contact your member of Congress, go here.