A Letter on CFS and Computing
Presented to U.S. Vice President Al Gore
The following letter was presented to U.S. Vice President Gore as part of
a presentation regarding the enhancement of lives of the disabled through
computers. The presentation was made through the courtesy of Trace Center
at the University of Wisconsin.
To: Vice President Gore
Re: Computer Technology, Online Service and the disABLED
Dear Vice President Gore,
My name is Molly Holzschlag, and I represent a population of approximately
100,000 to 1,000,000 individuals in the United States who suffer from the
baffling and disabling illness known as Chronic Fatigue Syndrome, or "CFS."
Like many fellow sufferers, I have been sick for many years, and have spent
countless dollars to survive, lost my home, certain relationships with family
and friends, and have ended up an SSI recipient, unable to work during the
best times, unable to care for myself during the worst.
A few years ago I had the good fortune to be given a computer by my younger
brother, and that Christmas, a friend bought me a modem. I found, through
private and commercial online services, an entire life. From this personal
experience, and the many others who share it, I am certain that computer
technology has given me things I may never have found because of my disability.
Where services didn't exist, there was always the opportunity to create
them, and with a few friends, I have been involved in a vast online project
to provide support, education, advocacy and social service to CFS patients,
physicians, politicians, and concerned friends.
The CFS/ME Computer Networking Project, also known as the CCNP, is a group
of patient volunteers, many working from laptop computers while in bed,
to provide a variety of such online services that span commercial networks
like GEnie, Prodigy, Compuserve and other, public networks like FIDOnet,
the Internet, and Freenets, and private Bulletin Board Services world wide.
Our project is working to bring this technology to many who are still not
connected to online services, be it because they do not have computers,
or supportive knowledge, or what have you. The CCNP attempts to address
all of these issues to ideally provide solutions for anyone interested and
capable of seeking such services.
Support -
Many CFS patients are home or bed-bound, and cannot join active support
groups. As a result, they are isolated emotionally and socially, and this
has become part of the fatal aspect of CFS, due to suicide from physical
pain and emotional despair. Computers enable the bed or house-bound patient
to access any number of systems, many of which are free or low cost, and
ultimately make lasting friendships and support systems that help them through
their days.
Education -
Because of the interest and research into CFS in the last several years,
there are continually changing ideas about the syndrome, how people get
it, and how it can be managed. Computer information services have enabled
CFS patients to get up to the minute information to one another as it becomes
available, which in turn helps patients, their families, and the general
public to keep informed with the rapidly changing trends in this disease.
Advocacy -
Political support is essential to furthering public awareness and medical
research regarding this ailment. With the use of computers, advocacy events,
letter writing campaigns, and other issues are shared, increasing the possibility
that one day this illness will be understood and cured. With your own interest
in computers, patients online have direct Internet access and can express
their needs directly to you and your staff. This is government at its best,
and to be a part of that is a crucial and gratifying experience for anyone.
Social Services -
Many patients become unable to work when stricken with CFS, and require
a great deal of social service intervention. Information disseminated via
computer network systems is helping patients to get the social services
they so desperately need.
There is no doubt in my mind that online services do not only enhance but
significantly improve the lives of homebound and isolated patients. While
this letter covers that idea in the context of CFS, I think it applies to
many, many conditions. Eventually, I believe online technology will be able
to not only provide support and information for such individuals, but open
doors to new professions and ways of self-support that have not existed
before. Please know that your interest in this technology and how it affects
individuals such as myself is very encouraging.
Sincerely,
Molly Holzschlag
Reproduced with permission from CATHARSIS,
volume 15, August 1994.
© Molly Holzschlag, 1996
molly@molly.com
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