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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 us a copy as well. If you receive a response from your
elected official, send us 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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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.
