http://www.thedailynewsonline.com/articles/2009/12/12/news/6255826.txt
Discovery sheds light on a medical mystery
By Paul Mrozek
pmrozek@batavianews.com
Saturday, December 12, 2009 2:41 PM EST
(RELATED STORY: Pediatrician lauds 'extraordinary' study
http://www.thedailynewsonline.com/articles/2009/12/12/news/6266200.txt )
Twenty-five years ago, more than 200 people in rural Western New York came
down with a mysterious ailment with symptoms such as achy joints, muscle
weakness, digestive upset, insomnia, clouded thinking and exhaustion.
The practice of Dr. David S. Bell of Lyndonville was inundated with patients
who were all ill in the same way.
"Just a lot of my patients came in with mono that didn't get better," he
said.
At the time medical professionals didn't know what the disease was.
Cities throughout the country were also hit hard. One of illness' nicknames
was "yuppie flu," because many of its victims throughout the country were
upscale urban types.
It was also called "The Disease of a Thousand Names," because its symptoms
were similar to others such as rheumatoid arthritis, multiple sclerosis and
mononucleosis.
In 1988 the federal Centers for Disease Control named it Chronic Fatigue
Syndrome.
Clusters
In the mid 1980s there were two rural areas in the United States that had
large numbers of CFS cases. One was in the Orleans County community of
Lyndonville; the other Incline Village, Nevada, near Reno and close to the
California state line.
The geographic scope, of what came to be known by researchers who have
studied what came to be called the Lyndonville Outbreak, was roughly all of
Orleans County, west to Niagara and Erie counties, south to Batavia and east
into Monroe County.
Bell was trained as a pediatrician and general practitioner. His career path
changed with the outbreak because dozens of his young patients were
afflicted with the same ailment.
He's published several books on CFS.
"I've become a researcher," he said this week.
Bell, 65, is semi-retired and is not accepting new patients. His medical
office is in Oak Orchard Community Health Center in Lyndonville.
The total number of people inside the roughly rectangular area of Western
New York diagnosed with CFS over a three-year period beginning around 1985
was 206, among them 61 children whom Bell tried to treat.
The disease puzzled the medical establishment. There was no identifiable
cause of CFS or clue as to how it was transmitted.
The way doctors determined if someone had the disease was through a clinical
exam, confirmation of symptoms that wouldn't clear up and ruling out other
illnesses, Bell said.
There were no effective treatments. The severity of the cases varied from
mild, in which a could still lead a productive life but tired easily, to
severe, which meant patients could not function and were classified as fully
disabled.
Some people got better. Others got worse.
In some cases doctors, to avoid fights with the Social Security
Administration over a patient's disability status, diagnosed people as
suffering from other better known diseases such as atypical multiple
sclerosis or fibromyalgia, Bell said.
The tiredness linked to CFS is caused by a reduction of blood flow to the
brain. That decrease in circulation occurs when someone with CFS is either
sitting or standing and can only be relieved by lying down, Bell said.
The doctor said the blood flow in people with severe cases of CFS can be as
low as people with terminal heart disease.
There's been very little research done on CFS. Because no one knows the
cause of it, it's difficult to attract grant funds to study the disease and
without money the scientists weren't interested, Bell said.
Breakthrough?
For CFS victims with the most serious symptoms, the past 21/2 decades
provided little hope for either effective treatment of the disease or any
medical research that could point toward a cause or a cure.
That poor outlook changed two months ago. Science, a highly regarded medical
journal, published an article in its Oct. 8, 2009, edition, in which a team
of researchers concluded that CFS was caused by a little-known,
rarely-studied and difficult-to-detect virus.
The Xenotropic Murine Retro Virus (XMRV) is in the same family of viruses
such as HIV and is one of only four known retroviruses.
"The implications are that this is very, very important," Bell said.
The research, if it can be replicated through other studies, points toward a
"magic bullet" to find treatments for and a cause and cure of CFS, Bell
said.
That's one of the main reasons Bell is trying to find all 61 of his former
patients.
"We're going to track down as many as we can," he said.
Bell runs the Lyndonville Research Group, a loosely knit volunteer
organization that offers support and information for people with CFS. He
also publishes Lyndonville News, a newsletter about the disease.
On Dec. 6 Bell conducted a CFS workshop at the Batavia Holiday Inn. The
purpose of the seminar was to update CFS sufferers and their families about
the potential impact of the recently published findings.
More than 100 people from Western New York and Ontario, Canada attended the
forum. There was a buzz among those in attendance about the Oct. 8 Science
article.
"I just think it's very exciting. I can't even wrap my brain around it,"
said Cheryl Gates, 49, of Batavia, who is a former patient of Bell's.
"Any improvement, I'll take. It's huge," Gates said.
Gates, the daughter of former city manager Ira Gates, has suffered with CFS
since 1986. She hasn't driven a car in 23 years and is disabled.
"I'm pretty much homebound," she said.
If Gates exerts herself physically her symptoms worsen. There is very little
quality of life.
"You miss all the milestones, career and family," Gates said.
Gates became ill when she lived and worked in San Francisco. Her symptoms
worsened the following year and she returned to home to Batavia.
On the day she flew in from the Bay Area, Gates saw a newspaper article on
Dr. Bell and the Lyndonville Outbreak. She called Bell's office and
immediately became one of his patients.
Ward Karn of Fremont, in the Bay Area of California, also attended Bell's
Dec. 6 lecture. Karn, 60, a native of Indian Falls, has been ill with CFS
since 1986-87.
"A 20-year nightmare," he said.
Hamburg resident and Bell patient Lori Lawhead said she's had CFS for seven
years.
Lawhead said the disease has cost her her job. Her fiance has left her and
she is about to lose her house.
"It's a horrible illness. I know that firsthand," she said.
Dr. John Whiteman, an orthodontist from Niagara Falls, attended Bell's
workshop to get first-hand information for his daughter, Kimberly Ricardi,
who has CFS. Ricardi, 37, became ill with mono while attending Penn State,
but the symptoms never dissipated.
Bell later diagnosed her with CFS. Ricardi is married and has a child but
tires very easily.
"She knows how to manage. She has to lay down in the middle of the day,"
Whiteman said.
Whiteman said he thought Bell's presentation was "tremendous" for both lay
people and medical professionals.
Whiteman said individuals who have CFS are often stigmatized by people who
think they are a "bunch of sissies," who just lack motivation or discipline
to live a normal life.
Two sisters with CFS from Ontario, Canada, traveled to Batavia for Bell's
seminar.
Rachelle McCoy, 49, of Cornwall, has been ill for four or five years. Carole
Anne Fischer, 54, has been sick for 21/2 years.
Both were originally misdiagnosed.
"We had exactly the same symptoms," Fischer said.
Both women subscribe to the Lyndonville Newsletter and are unable to work.
They said they are anxious for follow-up research to be done on XMRV.
"I guess we'll wait six months," McCoy said.
Bell conducted follow-up studies of his original patients 13 years after the
Lyndonville Outbreak. He's been in contact with about 40 of them and has not
been able to find the other 20.
Any of Bell's former patients with whom has not been able to contact and who
want to participate in the follow-up should call (585)
765-2099 (585) 765-2099.
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