Tuesday, May 9, 2000 | 9:26 a.m.
The wrath of Chronic Fatigue Syndrome is far more traumatic than its name implies.
That's a message the Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS) Association of America wishes to impart on people, especially this week as Friday marks Chronic Fatigue Syndrome (CFS) Awareness Day.
According to the association's website, www.cfids.org, some 800,000 people nationwide have CFS.
"People who have this are truly suffering," explains K. Kimberly Kenney, president and CEO of the association, based in Charlotte, N.C. "Too few people understand that it's more than just being tired."
Indeed. Besides debilitating (and seemingly constant) fatigue, symptoms of the non-fatal disease include: unfreshing sleep, muscle and joint pain, headaches, cognitive problems including impaired short-term memory and concentration, tender lymph nodes and sore throat. Its symptoms closely mirror those of another ailment, Fibromyalgia, and sufferers often consider the illnesses one-in-the-same.
While the cause of CFS continues to elude doctors (as does its cure) a diagnosis can be made after symptoms persist for six months.
The levels at which people with CFS function in their daily lives varies greatly: Some are able to continue on with careers and family lives and appear healthy, but may be forced by the disease to curb activity. Others can be entirely bedridden for extended periods of time.
The first documented CFS cases came in 1984 when the symptoms of about 200 people in Northern Nevada, near Lake Tahoe, were investigated by a pair of doctors. Since then attention, research and funding for the disease has grown.
Inappropriately dubbed the "yuppie flew" in its early days the disease predominately strikes adult women more than men, although it is now accepted that CFS suffers can be people of all ages -- including children and teens -- and of all racial and socio-economic backgrounds.
One of CFS' more well-known sufferers: 1996 Olympic gold medalist and World Cup soccer champion Michelle Akers, who has battled the symptoms of CFIDS since 1991 and collapsed during a game two years later before being diagnosed with the disease in '94.
"At my worst, I was barely able to function or complete day-to-day activities and tasks," she writes on her website, www.michelleakers.com. "It was an extreme effort to do laundry, prepare a meal or attempt the exercise bike for five minutes. Many times just doing these small chores knocked me out for days or weeks.
"At my best, I could play (soccer) 15 to 20 (or if really lucky 30) minutes of a 90-minute match," and train enough to stay in shape for her soccer team and to "maintain a skeletal (professional) appearance schedule."
During the Olympics she writes, "Each game drained me to (the) point of near collapse." After matches, the team's doctor hooked her up to IV's to alleviate and prevent symptoms. By the end of the games, "I was completely wiped out." Still, she played in every match and went home a winner. "I consider this and out-and-out miracle."
Kenney says Akers "has done an excellent job of talking with the media about her experience and doing so, I think, in a responsible way to point out what she's given up in order to remain competitive at the level of play that she's been able to do."
The truth is out there
It was about 10 years ago that Nevada Senator Harry Reid became aware of CFS, when a one-time distance runner and fitness enthusiast from Lake Tahoe told him about her symptoms.
"She came to see me (because) she couldn't even walk around the block," Reid recalls. "She had this disease. At the time they called it Epstein-Barr (virus) and now it's called Chronic Fatigue."
Since then Reid has been a supporter of CFS patients and, beginning in 1995, worked to get some $22 million in funding appropriated by Congress for research of the disease.
In 1998 the Centers for Disease Control and Prevention in Atlanta was accused of misspending research funds -- some $12.9 million -- earmarked for CFS, using more than $8 million of the sum for other programs while more than $4 million went unaccounted for, and then lying to Congress about how the money was spent.
In 1998 Reid asked the General Accounting Office to investigate the allegations. Last year a U.S. Inspector General's audit report confirmed the misspending. The CDC did not challenge the findings.
Last fall Reid led the charge in asking Attorney General Janet Reno and the Justice Department to investigate the CDC's actions, to determine if any criminal wrongdoing had occurred.
A second report by the General Accounting Office, regarding CFS funding and research, is due out in June.
"I don't think it's fair," Reid says, "that the Centers for Disease Control arbitrarily determined what Congress did is of no importance, and they can do with the money what they want. That's why not only do I think it's wrong from a substantive, moral standpoint, but it may be criminally wrong, and that's why I'm having the Justice Department look at it."
For his efforts, Reid was honored in March by the CFIDS Association and the Nevada CFS Think Tank, a group of scientists and other interested parties that gathered to discuss current CFS research findings.
"We're grateful for his leadership on this issue," Kenney says.
She explains that the association had long suspected misspending by the CDC and had been working for six years to uncover such findings. "We couldn't get enough documentation to support our suspicions, and it was with Senator Reid's help that we were finally able to nail their feet to the ground."
Of the honor, Reid says, "I think I'm doing just what anyone else would do if they had the opportunity. These people are very sick and we badly need to do something to find a (medical) breakthrough."
Although the CDC has promised to repay the entire amount of the funds that were misdirected, Reid is skeptical that the money will ever be seen. "I don't know where they're going to get it (from). Are they going to rob it from some other program?"
Giving thanks
The CFIDS Association isn't the only group grateful for Reid's work. Local CFS and Fibromyalgia suffers also say they own the senator a debt of gratitude.
"I think Reid is our best friend in Washington (D.C.), says Lois Davidson, founder and co-leader of the Las Vegas Fibromyalgia/Chronic Fatigue Syndrome Support Group, which boasts 750 members.
"He strongly believes in his heart, it's not political, that health issues and women's issues and (CFS sufferers') issues are important," she says. "You can feel the emotion that he has when he speaks on health issues. I can't think of anyone in Congress more deserving (of the honor)."
Meanwhile CFS research continues. Kenney explains that clinical trials of the drug Ampligen have been ongoing for the past decade, and it has shown promise in patients, including some in trials in Northern Nevada, "who have been ill a shorter period of time and those who are less ill" than others with CFS.
Kenney says the organization is working to expand the number of researchers focusing on CFS.
"In terms of research, it's branching out into very diverse fields, looking into cardiac implications and brain scans and the impact on muscles, so it's definitely an illness that effects many different body systems, and to really get to the bottom of it, we're going to need a very diverse research effort."
Also atop the "to-do" list: continue to educate the public about CFS.
"People with this illness still have a really hard time fighting the stigma, a really hard time dealing with thoughtless comments people make" about being tired, Kenney says. "I think it goes to show there's a lot of education that needs to be done.
"But it is better recognized within the medical community, and there is more attention being paid to it than there was even a couple of years ago. We're moving in the right direction. It is a slow fight for people who have been sick a long time, though."
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