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:

 

The White House

 

U.S. Department of Health & Human Services

 

U.S. Department of Labor

 

Senators

 

Your Representative

 

Your State Governor

 

The Center for Disease Control (CDC) office of Science Quality

 

Centers for Disease Control and Prevention

 

FDA

 

FDA FDA's Dockets Management

 

FDA Science & Research

 

National Institutes of Health

 

National Institute of Arthritis and Musculoskeletal and Skin Diseases

 

NIH - Clinical Trials

 

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


Pain Connection 


HelpGuide


The Pain Companion


Practical Pain Management: The Comorbidity of Chronic Pain and Mental Health Disorders


American Psychological Association



National Board of Certified Counselors


Talkspace – online therapy


Theravive


American Association of Suicidology (202-237-2280) 


National Suicide Prevention Lifeline (800-273-8255) 


National Hopeline Network


Suicide Prevention Resource Center

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Resources on this website are provided as a service to the reader and in no way constitute an endorsement or referral to any physician or organization listed. It is the responsibility of the individual to research any doctor, support or chat, group, or organization listed. You should always consult your personal physician before following any suggestions offered. Please use your best judgment and always consult your doctor before trying anything suggested on the site.