Action Page: What can I do now? I want to help.
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What can I do publicly:
- Order some free wallet cards with the URL of this web site
on them. You can enclose them in letters or give them away to family
and friends. One person I know uses them for writing paper when people
ask for her email address -- "Oh, and this is a neat site, if you have
a chance, visit it" -- and then they get curious.
The more people visit here and read what CFIDS is like, from the
point of view of a PWC, the more things may improve for PWCs all around.
To order the cards, Email email@example.com
with your snail mail address and a note saying how many you want.
Twenty? Fifty? A hundred? This is a free service of the Listening
to CFIDS web site.
- Send a FREE Digital Postcard! The best
thing about our wonderfully customizable cards is that people have to
come back here to pick them up, and you'll be spreading the word
about CFIDS :)
- Read PWCs' comments on activism and advocacy:
- View John Friedlich's Advocacy Involvement
graphic and accompanying comments.
- Join WECAN,
an organization whose mission is to campaign against negative bias and
irresponsibility regarding CFIDS/ME and to inform and educate about
- If you're a PWC, or a friend or relative of a PWC, send your story
of life with CFIDS to Kathleen Houghton
for consideration for inclusion in a book she working on. She describes
it as being "for CFIDS patients by CFIDS patients" and says it will
tell the realities of living with this disease through first hand experience,
much like this web page does. Email
Kathleen for more information.
- Read what Daniel Poppe, the partner of
a PWC has to say.
- Write the editor for information
on advertising on this web site. This will allow us to pay the authors,
some of whom are disabled and unable to work. Getting disability or
SSI is often difficult.
- Contribute time or money to CFIDS organizations--CFIDS
Association of America, or
The National CFIDS Foundation
103 Aletha Road
Needham, MA 02192.
- Write your
congressperson to encourage legislation and funding for CFIDS research.
- Speak out when you hear misinformation about CFIDS.
- Subscribe to a CFIDS
mailing list or newsgroup.
- Read about Ampligen, an experimental drug
which is showing promise as a treatment for CFIDS. Much
more Ampligen info.
- Read about CFIDS Epidemiology.
- Read about RNase L, showing promise as a
diagnostic marker for CFIDS. Read Dr. Robert
Suhadolnik's remarks to Congress about RNase L.
- Contact Sandra Guilbeaux
about her "Quilt for a Cure" project.
What can I do privately:
- Find out How to Kill a Friend (and how
not to). Read Carolyn Gage's Do's and Don't's,
which she hands out to her friends.
- Read about Crisis Intervention and
the danger of suicide with PWCs.
- Just Listen.
- Read PWCs' feelings about the importance of support from their friends,
family, and pets:
- Call up friends or family with CFIDS, or visit, or drop them a card
in the mail--whatever they're feeling up to--so they know you haven't
- Don't be offended if PWCs say no when you offer to get together, or
if they sound vague and can't decide for certain until the last minute.
It's not that they don't want to participate; but rather they are truly
unable to predict how they will feel.
- Be patient in the face of mental and emotional changes like memory
loss, mental fogginess, and emotional ups and downs. Don't take it personally.
PWCs hate it as much or more than you do.
- Be willing to talk about the effects of CFIDS on your relationship,
if it seems necessary and appropriate.
- If a PWC says they feel awful, ask about them--don't change the subject
or act uncomfortable.
- Don't be surprised if today's symptoms are not tomorrow's.
- Offer to help, but allow PWCs to turn you down gracefully. Doing as
much as they are able to do increases PWCs' feelings of independence
and usefulness. But encourage them not to overdo and trigger a relapse.
- Encourage PWCs to get involved in CFIDS support groups if they are
interested and able--either online or face-to-face, if they're well
- Try to understand how everything seems like "too much trouble." Forgive
slowness to respond or act. It doesn't necessarily mean your friend
or relative's not interested--it may indicate instead a lack of energy
to pursue it.
- Never suggest the illness is the PWCs fault, or that they're making
it up, or making a bigger deal out of it than is necessary.
- Just "be there" when they need a friend. Being housebound and dependent
is difficult, and can be very isolating. Even PWCs who are able to leave
their homes need to know the world hasn't forgotten them.
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