Get to know the diagnostic criteria to understand the scope of CFIDS.

Then educate and advocate. Tell your doctor, give out literature, and demand that social services accommodate people with CFIDS and related conditions, including those with multiple chemical sensitivities (MCS) who desperately need chemical-free hospital rooms. If you can educate one health care provider by forwarding the free download excerpt of the Canadian Case Definition, adding the CDC's more outdated definition, and providing information from the CFIDS Association (who will send packets of information to health care providers), you will be doing a world of good.

 

Don't be crushed by the magnitude of public resistance.

CFIDS activism is held up by a lack of unity. The more you can organize with others, form connections, or even attend the CFIDS Association's annual Lobby Day in Washington, the more you will feel part of positive change. The CFIDS Association also provides a download of a packet of Awareness Day materials on how to contact public representatives and the media. Every action is meaningful.

 

Use one personal contact to make a difference in your community.

Do you know someone at a TV station? Ask them to play the CFIDS Association's Public Service Announcement. Does your newspaper print editorials? See if they will print a letter you write, or an excerpt of this letter. Are you friends with an endocrinologist? Educate her. (The CFIDS Association offers a free self-study course for doctors that gives continuing education credits). Do you know a professor? My book, Stricken, has been used at a college text at Stanford University (professors can request review copies from The Haworth Press), and many other CFIDS books make excellent donations to libraries, nonprofit resource centers, etc. Does your child's school use pesticides and other chemicals that might be making students sick? Advocate for alternatives.

 

Write government officials and demand more funding allocations for clinical research.

The CDC spent all of its CFIDS funds on other accounts or on epidemiological studies until recently. It is JUST NOW beginning to fund actual research. The studies are promising, and could lead to huge advancement and credibility for CFIDS.

 

Contact nonprofit and religious organizations that provide services to the sick and disabled.

Ask them if they know about CFIDS and the special needs of accomodating those with chemical sensitivities. If they don't, educate them. Many patients need meals on wheels, rides to medical appointments, and other basic volunteer assistance. Many live in abject poverty and can't get the help they need.

 

Offer to be an advocate for one CFIDS patient.

Help this person fill out forms, coordinate help, get housing, apply for disability, or get to a doctor's appointment. You won't believe the amount of difference this will make, and how much it will buoy someone's spirits.

 

Use the resources you have.

If your company encourages charitable donations, make sure the CFIDS Association is on the list. If your church does volunteer work, see if they can help a patient or two. If you can make a small donation to a CFIDS organization or arrange a fundraiser, do so. Be creative—see if a local corporation or grant-giving agency will match the funds you raise privately. Come up with something simple—a bake sale—or a wacky media-grabbing fundraising effort, like a CFIDS mattress "rest-in" at a local furniture store.

 

Organize accessible events.

Part of what keeps people in the dark about disabilities, and especially non-apparent disabilities, is the segregation of able-bodied and disabled people by the inaccessibility of social events. Organize a wheelchair-accessible, fragrance free, smoke free, sign language interpreted event so that everyone can attend and mingle. Many of us will be too sick to attend, but those who can attend—and even those who can't—will greatly appreciate your efforts.

 

Forward this letter to everyone you know.

Feel free to reprint the letter without my permission, as long as you provide my signature, web link, and note if the letter has been edited.

 

Let us praise you.

If you do any small bit of activism, give a donation, or help a patient, let the CFIDS community know. It makes all of us feel hopeful when we know that people care enough to take action. Support from generous individuals not only inspires us, and inspires more activism, but helps us to cope with a very difficult illness.

Spread the word—help us get our lives back.

Warmly,
Peggy Munson
11 Years Down (as of 2003)
Editor, Stricken: Voices from the Hidden Epidemic of Chronic Fatigue Syndrome

Excerpted from Peggy Munson's at (the rest of her 2003 CFIDS Letter is at this url): www.angelfire.com/ri/strickenbk/2003.html