Living With CFIDS
Chronic illness and the Internet
When I was diagnosed with
chronic fatigue and immune dysfunction
syndrome (CFIDS) in 1998, I started down a long, lonely road. Facing what turned into nine months of disability
leave, with no family within 3,000 miles and a Silicon Valley workaholic husband whose idea of coming
home early is 8:00 at night, I wasn't sure where to turn for advice, companionship and information about
an illness I could barely pronounce in one breath. Fortunately for me, I'm wired.
live in an area where home
computers are common. I have a friend who has a separate computer just to file her recipes in the kitchen.
My husband and I are no exception---we live in a three-bedroom house with two inhabitants and four computers,
not including the laptops our employers graciously let us use. So the first thing I did when I got home
from the doctor after I got my diagnosis was to get on the Web and search.
I realize it
isn't necessarily that easy---not everyone has Internet access. If you'd like to get set up at home, AOL,
Prodigy and most local phone companies provide Internet service, usually for less than $20 per month.
Check your local phone book under "Internet Access Providers."
If you can't afford Internet service,
or do not have a computer, most public libraries offer free Internet connections. A helpful computer-literate
adolescent (and which of them isn't?), such as a niece, nephew or neighbor, might be willing to search
on-line for you if you are homebound.
Finding information on
I discovered a
wealth of medical information beyond what I could have imagined. There are many web sites for CFIDS, including
The CFIDS Association of America (www.cfids.org), with links to multiple
related pages around the world. I found a whole community of support groups, one located right in my own
neighborhood. There were tips on treatment options, possible causes and how to get disability benefits.
As time went on, I was able to use the information I found to help my doctor diagnose the multiple
problems that turned out to be causing my fatigue and pain and find drug therapies that worked. Since
my illness had left me feeling totally powerless in most areas of my life, it was empowering to discover
so much about what was wrong with me and how I might be able to fix it.
You should be aware that
there are many sites on the Internet that claim to provide miracle cures for CFIDS and fibromyalgia. There
are also many sites that claim to debunk herbs and supplements as treatments, although I have found many
of them to be helpful in treating my illness. In general, the best sites to stick with are those associated
with the CFIDS and fibromyalgia associations, the National Institute of Health, and the Centers for Disease
Control. I also suggest that you work closely with your medical providers to develop the best treatment
plan for you, and talk to them about any ideas for new treatments that you find on the web, including
herbs and supplements, before you try them.
Making life easier
even more helpful
was being able to perform most of my daily tasks using the Internet. Since I had very little energy for
housework and errands, I used the Web to locate an errand express service and shop for groceries. Every
week when the grocery delivery service, Peapod, pulled up to my door, I wanted to kiss the driver, but
settled on giving him a tip instead. This service was the single greatest load off my body---to never
have to stand on line to buy food again! Cooking is a pleasure for me even while I am sick, and since
I discovered I have multiple food allergies and can't eat out much, I need to cook most meals at home.
Peapod helped me turn my home into a grocery store without ever leaving the house.
were another area of my life enhanced by the Internet. While I was working full-time, I was not able to
pursue my most avid passions, music and reading, with any regularity. After CFIDS made its appearance,
I suddenly had lots of time, if not much energy. I found two favorite sites---Amazon.com and SheetMusic.com.
Amazon is well known for being a one-stop source for almost any book imaginable, including many on chronic
illness and CFIDS, which I devoured during my long days on the couch during the rainy winter. SheetMusic.com
was an unexpected pleasure. I was able to locate a wide selection of jazz and Broadway tunes, in addition
to current pop music, and over the course of the winter learned a whole repertoire of standards (I'm an
amateur singer). With the help of another site, CDNow, I expanded my jazz library as well so I could listen
to the songs before I tried to sing them.
I discovered that most mail order catalogs now
have sites on the Web, and even ordered some new pajamas for my convalescence. I did all my Christmas
shopping on-line through a site that delivered California wine and fruit to my relatives down South.
Since I have to take an impressive quantity of herbs and supplements every day as part of my treatment,
I searched Web sites like Drugstore.com for the best bargains.
Even though the Internet
can make life easier in some respects, staring at a computer screen and typing may be a problem for some
of us with CFIDS. Like many others, I suffer from "brain fog," and tend to get spacey if I sit at the
computer too long. Taking frequent breaks and having a snack once every three hours, to keep my blood
sugar level, helps me concentrate.
Broadening your horizons
of the best parts
of the Web is e-mail. I had an account through my employer, but since I wasn't working during all this
time, I didn't have access to it. So I took Yahoo up on their offer and got a free account. Everyone in
my family has e-mail, and I have about 60 friends and relatives around the world whom I correspond with
on a regular basis. Since I didn't have the energy to visit much, and long distance phone calls
got expensive, this was a lifesaver for keeping my spirits up.
And when I got tired of being alone
all day, I used the Internet to research breeds and locate my pug puppy, Pasha, who joined our family
after I had been at home for three months. He's enriched my life in ways I could never have imagined.
Another benefit of Internet access is that I have been able to join several on-line lists or "chat
groups" for persons with CFIDS. These groups keep me connected to people who understand what it is like
to cope with chronic illness, and give me the opportunity to share suggestions on ways to make daily life
easier. It is nice to be able to share frustrations caused by this illness over the privacy of e-mail,
without putting additional burdens on my family and friends.
Now that I'm back at work part-time
and recovering from my long illness, I'm grateful for the many ways the Internet came to my rescue. In
the past, I had felt that technology was de-humanizing, but I learned that the Web could keep me plugged
into the human race even when I could barely leave the house.
Jennie Floyd is a telecommunications
writer and vocalist living in the San Francisco Bay area.
Better to be discriminating when it comes to Web info
Last year, more than 17 million Americans
searched the Internet looking for health and medical information. Unfortunately, more than 70% of what
they found was either wrong or grossly misleading, according to studies conducted by Johns Hopkins and
Ohio State University. It is often difficult to determine what is and isnít a credible source. Here are
a few tips to help you when searching:
Go with names you know. Information is more likely to
be credible when
it is being posted by a large hospital, university or government agency. Small private institutes that
were formed only for study of one treatment may not be the most unbiased source.
Look for "seals of approval." Some sites carry "seals
of approval" or
awards from other organizations for content. While this does not necessarily mean that the site is credible,
if the award or seal is from a well-known source, it is a good sign.
Use a good search engine. The CFIDS Association of America
to be an advisor to the Medinex Health Search Engine for information on CFIDS. Medinex is assembling a
panel of physicians and non-profit organizations to serve as quality control experts in order to create
a "safe haven" for individuals seeking legitimate health information.
Expect backup for claims. Clear support and evidence should
any claims relating to the performance of a specific treatment or product. For example, if research references
are provided, the majority should list journal articles that could be found in a major medical library
and checked, not private conversations or speeches given that are impossible to trace.
Consult with your physician. Never try any treatment,
medication or supplement
that you have located on the Web without checking with your health care providers first. They are the
only ones who are intimately familiar with your medical records. Internet advertisers cannot guarantee
that their products are not contraindicated in your situation.