FM/CFS/ME RESOURCES - Advocacy Information

 

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ADVOCACY INFORMATION

ADVOCACY IN ACTION! 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, while CFS receives an estimated $4 million a 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. Feel free to Contact Us with any questions or ideas you might have.

Guidelines For Writing Advocacy Letters - What should your letter say? How should you say it? Who should you send it to? Letter writing tips to make advocacy easier.

FM/CFS/ME Fact Sheet (In PDF format) - Condensed information on FM and CFS/ME, including demographics, disability studies, research findings, the current status of spending on these conditions and more.

Advocacy Links - Find the names of your senators or representatives along with addresses of other public officials, such as the director of the National Institutes of Health, etc.

Sample Advocacy Letter (In PDF format) - This letter gives you an idea of what you can say in your own letter.


Guidelines For Writing Advocacy Letters:


Introduce Yourself As A Person With FM and/or CFS/ME

If you wish, you can indicate your age, sex, marital status, and whatever else you feel may be pertinent to depicting you in your situation. You don't need to go on at length about "what" FM is, simply print out the FM/CFS/ME Fact Sheet (in PDF format) and attach it to your letter.


Describe How FM and/or CFS/ME Has Negatively Impacted Your Life

Here are some points you may want to address. Remember, this section should be brief, one to two paragraphs long.

  • How many years you have had the syndrome, including the time you hobbled along without the benefit of a diagnosis.

  • How much money and how many doctors it took you to get a diagnosis.

  • The difficulties you have had with finding a knowledgeable and compassionate physician to treat you (dollars wasted, number of wrong diagnoses or inappropriate surgeries/treatments, and mention one of the most insulting comments or humiliating situations you had to endure during this troublesome time).

  • The number of various treatments you have tried and how ineffective they have been.

  • Any problems you have had with your insurance company not paying for your FM and/or CFS/ME treatments.

  • Has FM and/or CFS/ME affected your employment status? Do you consider yourself to be disabled by FM and/or CFS/ME (fully or partially)? And if so, are you receiving social security disability benefits or other forms of government compensation? Have you applied for financial assistance but been turned down?

  • The impact that FM and/or CFS/ME has had on your family life: Has it cost you a marriage? Does it impair your ability to function as a parent?

  • Have you dropped out of sight "socially" due to lack of energy and uncontrollable pain? Social isolation is a nasty enemy to people who suffer daily from chronic illnesses such as FM and/or CFS/ME!

  • Mention if there are other members in your family, especially children, who are struggling with the symptoms of FM and/or CFS/ME.


Express Your Thanks

Always be polite and thank your official for taking the time to read your letter. Let them know that any help that they can offer would be greatly appreciated. You can also state that you would be eager to hear about any suggestions that they could provide you.


Provide Contact Information

If you are requesting the reader to contact you, provide your telephone number, fax number, and/or e-mail address. Government officials are obliged to respond to your inquiry as long as you provide your address.


Sign Off

Use "Sincerely", "Kindest Regards", "Yours Truly", etc. Then sign your name. You may send out a neat photocopy of the body of your letter (if you don't have access to a word processor and printer), but please personally sign each copy that you send out.


Remember

Make copies of everything! Besides making a copy of your letter for your own files, PLEASE send me a copy as well. If you receive a response from your elected official, send me a copy of that too!

FM/CFS/ME RESOURCES will continue to work with patients to keep the advocacy efforts rolling, but it would be of great help to us to know which elected officials have expressed an interest in FM and/or CFS/ME. This is a world wide, team approach to advocacy, and your input will help ensure success.

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Advocacy Links:

Fibroduck: http://www.fibroduck.com/
Fibroduck.com is owned and run by Jamie Goodwin, a freelance writer and former stand up comedienne. The aim of Fibroduck is to raise awareness for Fibromyalgia, whilst making you smile. The duck is always free, you only pay postage costs. Visit their website - Fibroduck.com to get your own duck or to learn more about this form of awareness.


U.S. Senate: http://www.senate.gov
A complete listing of senators from every U.S. state, including address information. This site is regularly updated to reflect the most recent elections.


U.S. House of Representatives: http://www.house.gov
A complete listing of representatives to the house from every U.S. state, including address information. This site is regularly updated to reflect the most recent elections.


U.S. Governors: http://www.usa.gov/Contact/Governors.shtml
A complete listing of every U.S. governor, including contact information. This site is regularly updated to reflect the most recent elections.


U.S. White House: http://www.whitehouse.gov
Information about how to contact the President of the United States.


Canadian Members of Parliament: http://webinfo.parl.gc.ca/
This site contains links to Members of Canadian Parliament.


National Institutes of Health: http://www.nih.gov
This site provides an overview of each division of the National Institutes of Health. A very useful site for general information.


Elias Zerhouni, M.D.
Director, National Institutes of Health
Building 1, Shannon Bldg RM 126
1 Center Drive, MSC 0148
Bethesda, MD 20892-0148
E-mail: ez26y@nih.gov
Phone: 301-496-2433
Fax: 301-402-2700


Stephen Katz, M.D., Ph.D.
Director, NIAMS (National Institute of Arthritis, Musculoskelatal, Skin Diseases)
Building 31, Room 4C-32
31 Center Drive, MSC 2350
Bethesda, MD 20892-2350
E-mail: katzs@mail.nih.gov
Phone: 301-496-8190
Fax: 301-480-2814


Story C. Landis. Ph.D.
Director, NINDS (National Institute of Neurological Disorders and Stroke)
Building 31, Room 8A-52
31 Center Drive
Bethesda, MD 20892
E-mail: landiss@ninds.nih.gov
Phone: 301-496-9746
Fax: 301-496-0296


Anthony Fauci, M.D.
Director, NIAID (National Institute of Allergy and Immune Diseases)
Building 31, Room 7A-03
31 Center Drive MSC 2520
Bethesda, MD 20892-2520
E-mail: af10r@nih.gov
Phone: 301-496-2263

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