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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.
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How many years you have had the syndrome, including the time you hobbled along without
the benefit of a diagnosis.
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How much money and how many doctors it took you to get a diagnosis.
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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).
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The number of various treatments you have tried and how ineffective they have been.
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Any problems you have had with your insurance company not paying for your FM and/or
CFS/ME treatments.
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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?
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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?
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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!
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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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