CHRONIC FATIGUE SYNDROME
CAMPAIGN FOR A FAIR NAME
Researchers, doctors and patients have long hated the term chronic fatigue syndrome (CFS), because it does not reflect the full range of symptoms from this complex condition of the immune and neurological systems, affecting more than four million Americans. Patients feel the current name trivializes their illness, and doctors argue that it is confusing to the public.
In response, ProHealth, Inc.—a leading provider of online support, education and nutritional products for people with CFS and fibromyalgia—recently launched the Campaign for a Fair Name, with the goal of developing a new name that is fair and accurate and will validate the seriousness of this often disabling disease, according to ProHealth founder and CFS patient, Rich Carson.
“Chronic fatigue is not chronic fatigue syndrome,” said Carson, 49, who was diagnosed with CFS in his early 20s. “Lots of things cause chronic fatigue. Fatigue is a normal part of life for many. But chronic fatigue syndrome is special. It is a serious disease—real and complex—and it deserves its own special name.”
Carson points out that according to the CDC, 10 to 25 percent of all patients who visit general practitioners in the U.S. complain of prolonged fatigue. However, most do not have chronic fatigue syndrome, a diagnosis that involves an ongoing pattern of symptoms in eight different categories.
“Nobody is justified in calling CFS by the name of one of its symptoms. We don’t call cancer, AIDS, Addison’s, Parkinson’s, MS or hepatitis ‘chronic fatigue’ even though those diseases frequently cause chronic fatigue,” explains Carson. “Calling a serious, complex, debilitating disease ‘chronic fatigue’ is inaccurate and simply wrong. It patronizes patients and indicates a lack of knowledge, a lack of awareness about the disease, and a lack of sensitivity.”
Carson says he has already received hundreds of letters of support since the Campaign for a Fair Name was launched through ProHealth’s online newsletter. Suggestions for a more accurate name have included myalgic encephalomyelitis (the name most commonly used in Europe) and chronic fatigue immune dysfunction syndrome (CFIDS), a name that points to at least one suspected cause of the syndrome. In its initial stage, the Campaign for a Fair Name will begin with a forum on ProHealth’s website. Patients will be able to submit suggested names and host discussions on how to facilitate voting for the names. ProHealth will defer any official vote counting to a nonprofit organization to be determined at a later date. If you have a suggestion for a new name or would like to participate in the Campaign for a Fair Name, send your contact information and ideas to Rich Carson at CF***********@pr*******.com
VISIOVOICE AND INFOVOX IVOX
AssistiveWare, a worldwide leader in assistive technology for the Mac OS X operating system, is joining with Acapela Group, a producer of computer speech systems, to release two new accessibility products: VisioVoice and Infovox iVox.
VisioVoice provides a number of speech- and visionrelated innovations to enhance access to Mac OS X for users who are blind or low-visioned. These features include 1) the conversion of Text, Word, HTML, PDF and RTF files to audio files or iPod-ready iTunes tracks; 2) a document and selection reader with fast-forward and rewind functions; 3) large cross-hair and target cursors; 4) text and image zoom windows; 5) spoken interface elements as the user navigates across the screen; and 6) multilingual support to Apple’s VoiceOver technology.
VisioVoice is bundled with Infovox iVox, a new product from Acapela Group created in collaboration with AssistiveWare. Infovox iVox allows the naturally sounding, high quality voices of the Acapela Group to be used by any Speech Manager-compliant application on Mac OS X, including applications such as TextEdit, Preview, Acrobat Reader, Proloquo and AppleWorks, as well as many educational titles. Infovox iVox, which is distributed worldwide by AssistiveWare, can also be used with Tiger’s built-in VoiceOver screen reader.
Both products are Universal binaries (can be used on PowerPC and Intel Macs). They include a selection of male and female voices in 11 different languages.
The high quality text-to-audio capability of VisioVoice and Infovox iVox appeals to a wide user base. In addition to users who are blind or low-visioned, many other groups will also benefit, including individuals who are learning to read, learning to speak a foreign language, or studying through both visual and audio techniques.
TEACHING NEW SOFTWARE DESIGNERS
IBM has announced an educational program providing computer science majors at colleges and universities with the technical skills to develop or adapt software for easier use by people with disabilities, the maturing population and non-native language speakers, giving these groups greater access to the Web and electronic office documents.
The computer giant recently posted a Web-based lecture, available for viewing anytime, that teaches specific programming techniques and illustrates the importance of developing software and Web applications that are accessible to all. Professors who lead computer science courses can easily incorporate the material into their curricula.
“While there are many courses on programming skills, few, if any, lectures are devoted to encouraging students to consider the needs of computer users with sight, hearing or mobility disabilities when they write software code,” said Dr. Wayne Dick, chair of the Computer Engineering and Computer Science Department at California State University-Long Beach. “IBM’s considerable expertise in assistive technologies will help computer science majors differentiate themselves in the job market, and give the students the satisfaction of helping others and solving challenges. The skills also make good business sense, given the size of the disabled community.”
Between 750 million and one billion of the world’s six billion people have a speech, vision, mobility, hearing or cognitive disability, according to the World Health Organization. According to the U.S. Census Bureau, one-quarter of the U.S. population will reach 55 by 2008, and about two-thirds will experience a disability after age 65.
As part of the program, IBM is also launching a contest challenging students to propose and design open source software for people with disabilities. To qualify, entries must be based on the new international standard for open source materials, called the OpenDocument Format (ODF). Familiarity with ODF will be increasingly important, as it is predicted that the format will be required by 50 percent of governments and 20 percent of commercial organizations by 2010.
This program is an effort by IBM to foster innovation that really matters,” said Frances West, director of the IBM Human Ability and Accessibility Center.” We’re distilling our extensive experience and know-how when it comes to accessibility, and bringing it to bear for the generation of computer scientists-in-training, who can really make a difference in their professional careers.”
DEPT OF JUSTICE
ENFORCING THE ADA ON CAMPUS
Among college officials and advocacy groups, it is widely known that many campus facilities do not comply with standards for accessibility required by the Americans with Disabilities Act (ADA). Sixteen years after the act’s passage, many institutions are still struggling with how to change their procedures and infrastructure. Most colleges focus on the issue when they are adding new facilities or when they receive complaints from students or employees.
The U.S. Justice Department has become impatient, however, recently undertaking reviews of several colleges and universities to evaluate ADA compliance and help the institutions initiate plans for correcting accessibility problems. Recent settlements have been reached, for example, with the University of Chicago and with Colorado College. These schools have pledged to make a series of improvements in facilities within the next few years and to regularly report their progress.
According to Cynthia Magnuson, a spokeswoman for the Justice Department’s civil rights division, the reviews have not necessarily been prompted by specific complaints. Still, Magnuson acknowledges that the review process has not been random, and that schools are often selected for review because the Justice Department is aware of certain problems. The reviews are expected to lead to improvements not only at the institutions being studied, but more generally in higher education.
Compliance agreements stipulate improvements in both older and newer facilities, and require strict standards for any facilities constructed in the future. Tasks considered important by the Justice Department include 1) changing elements of facilities—such as doors, restrooms, signage and entrances—that act as barriers for people with disabilities; 2) ensuring that all buildings and facilities in which programs are offered to the public and students meet accessibility standards; 3) creating systems for changing facilities or moving events if a person with a disability wants to attend; 4) reviewing and updating evacuation procedures and transportation services, including campus-wide bus services; 5) displaying information about accessible routes through the campus, accessible parking areas, accessible entrances to buildings, accessible spaces within buildings and accessible restrooms; 6) providing assistive listening systems/devices for people with hearing loss in lecture halls, meeting rooms, auditoria and other assembly areas; and 7) ensuring that a specified portion of units (and adjoining bathrooms) in dormitories are accessible to people with disabilities and that a “reasonable number” of housing units have first floor common areas and bathrooms that can be used by visitors with disabilities.
So far the response from the institutions reviewed has been positive, and the settlements cooperative. “We applaud the University of Chicago for its extensive effort to improve campus access greatly for all students and visitors,” said Wan J. Kim, Assistant Attorney General for Civil Rights. “We hope that other colleges and universities will follow this example and make the entire college experience accessible to their students with disabilities and others who visit their campuses.”
The Justice Department’s actions have been lauded by disability advocates in higher education. Richard Allegra, associate executive director of the Association on Higher Education and Disability (AHEAD), said that he welcomed an increased emphasis on complying with the ADA. “If a college is going to say that we are here to educate the students, and there are barriers to some students,” he stated, “they are not meeting their mission.”
ACCESSIBLE SPORTS FISHING
TURBOSET ARM SUPPORTER
America’s Fishing Device Inc., a sports fishing company located in South St. Paul, Minnesota, has been making a big splash with its Turboset products, featuring a line of arm support cradles that can be attached to poles to ease the wear and tear on wrists, elbows and shoulders.
The Turboset was designed to make sports fishing more enjoyable for anglers who have arthritis or other conditions affecting their strength or mobility. But the adaptive gear has become popular with a broad group of fishermen, as it provides increased leverage, helps support and balance the rod, and improves accuracy for beginning casters.
The Turboset products range from the lightweight Angler to the heavy duty Turboset Tournament. All include a three-way or six-way adjustable attaching bracket, an arm support cradle (of varying sizes and designs), a small comfort pad that nestles under the forearm and stainless steel hardware. There is no scarring of the rod’s cork handle, and the devices stay firmly in place. A Velcro strap helps secure the bracket for consumers with arm struggles.
Each model is useful for a different style of fishing maneuvers, and reviews have been favorable. The Turboset products work equally well for casting and spinning rigs, and can be used easily by sports fishermen who switch hands with the rod.
In order to accommodate the preferences of the vast majority of guests, Marriott has recently made the decision to make all of its hotels in the United States and Canada 100 percent smokefree. This action by the hotel giant is the largest move in the hospitality industry toward a smoke-free environment, and affects over 2,300 hotels and corporate apartments under the Marriott, JW Marriott, Renaissance, Courtyard, Fairfield Inn, SpringHill Suites, Residence Inn, TownePlace Suites and Marriott ExecuStay brands. The new policy includes all guest rooms, restaurants, lounges, meeting rooms, public spaces and employee work areas.
This latest decision reflects a trend over the past decade to limit smoke exposure. Previously, more than 90 percent of Marriott guest rooms were already non-smoking, and local ordinances also prohibited smoking in many public spaces. Designated smoking areas will continue to be made available outside of the hotel for our guests who smoke.
Marriott’s action exemplifies corporate responsibility in safeguarding the health of its guests, as evidence accumulates about the ill effects of even passive smoke exposure. According to a report from the Scientific Committee on Tobacco and Health, exposure to environmental tobacco smoke is a cause of lung cancer, and in those with long term exposure, the increased risk is in the order of 20 to 30 percent. Additionally, smoking in the presence of infants and children is a potential cause of sudden infant death syndrome (SIDS), the main cause of post-neonatal death in the first year of life, and exacerbates serious respiratory illness, asthmatic attacks and middle ear disease.
“Creating a smoke-free environment demonstrates a new level of service and care for our guests and associates,” said J.W. Marriott, Jr., chairman and chief executive officer of Marriott International. “Our family of brands is united on this important health issue and we anticipate very positive customer feedback.”