Readers' Forum
Correspondence with the Chronicle editor

Federal info out of date
Our state CFIDS organization has developed a good working relationship with the Connecticut Department of Public Health. The department has offered to mail information about CFIDS to health care providers in our state; however, they only want to use publications issued by the Centers for Disease Control and Prevention (CDC) or National Institutes of Health (NIH). Nothing up to date is available! The NIH's booklet for physicians is out of print and the CDC's booklet has not been updated since May 1999. On-line information from them is not really appropriate for a formal mailing.

It's frustrating to build an important working relationship like this one, only to be hindered by federal agencies that don't maintain current publications (even on the Web). We need these tools - both as patients and as advocates for our cause.
Michelle Lapuk, co-president, Connecticut CFIDS/FM Association
Bloomfield, Conn.

Opening eyes to vision problems
Thanks so very much for the recent article in The CFS Research Review regarding visual symptoms and CFIDS ("Visual Dysfunction in Chronic Fatigue Syndrome," Summer 2001). This was a first for me, to read about something that is common to PWCs, including myself. The Review and the Chronicle, too, are at the forefront of information on CFIDS. You are to be commended.
Jan Meissner, Las Cruces, N.M.

What's in a name?
There has been much discussion about changing the name "chronic fatigue syndrome." The current name means nothing to much of the medical world, since it does not convey the devastation that the illness causes individuals and their families.

Still, I have mixed emotions about changing the name. The proper name would tell people with the disease what lies ahead. It would tell them that each day they will wonder whether they'll be able to get out of bed, whether their digestive systems will work and whether they'll face incredible headaches, muscle spasms and body pain. They'll know that they may have brain fog, or a flare-up of allergies, or that they may be so dizzy that they pass out.

The proper name for chronic fatigue syndrome might horrify the individual and their loved ones. While this may not be good, for the medical world and the general population it is necessary. The illness will finally be taken seriously and be truly understood for the devastation it causes. Maybe then the government will provide the funds necessary to find treatments to cure this poorly named illness.
Anne McFerron, Severn, Md.

Degrees of disability
The most recent Chronicle issue made me realize even more the wide range of disability that CFIDS imposes on each individual. While some people are able to participate in activities, others are barely able to function. Personally, I have gone from working 60-70 hours per week to being completely bedfast for long periods of time. 

This disease is different for everyone. Just because one PWC is able to function at a higher level than another does nothing to minimize the first person's symptoms or disease. Thank you for helping all of us. With each and every issue, I believe the information in the Chronicle improves the lives of all PWCs.
Jamie, Calhoun, Ky.

The CFIDS Chronicle welcomes letters from readers.  Please address correspondence to:  The CFIDS Association of America, P. O. Box 220398, Charlotte, NC 28222-0398, Attention: Mark Giuliucci, Editor.  Letters also may be sent to chronicle@cfids.org.