Discovery sheds light
on a medical mystery
By Paul Mrozek
Saturday, December 12, 2009
(RELATED STORY: Pediatrician lauds 'extraordinary'
study - ~jvr: See below)
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
"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
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.
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
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.
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
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
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
"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 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
"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
"It's a horrible illness. I know that firsthand," she
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
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
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.
The Daily News
By Paul Mrozek
Saturday, December 12, 2009
(RELATED STORY: Discovery sheds light on a
medical mystery - ~jvr: See above)
The scientists who conducted ground-breaking
Chronic Fatigue Syndrome research were from the
Whittemore Peterson Institute in Reno, Nev., in
collaboration with teams from the Cleveland Clinic
and the National Cancer Institute. Whittemore
Peterson is a non-profit organization formed
specifically for research of diseases such as CFS and
other neurological immune illnesses such as
Results of the Whittemore Peterson studies were
published in the Oct. 8, 2009, issue of the medical
journal Science. The researchers concluded that a
relatively unknown retrovirus, XMRV, causes CFS.
Of the 101 CFS patients in the Whittemore test
group, XMRV was detected in 68 of them, or 67
In addition to the 68 CFS patients who had XMRV,
three other types of tests showed evidence of XMRV
in another 31 people in the clinical group.
In total, 99 our of 101 people had either XMRV or
showed evidence of the virus.
"This is an extraordinary number. The implications
are extraordinary," said Dr. David S. Bell of
Bell, a semi-retired pediatrician, began studying CFS
25 years ago, after 61 of his patients became ill with
In a healthy control group tested as part of the
Whittemore Peterson study, only eight out of 218
people from throughout the United States, or 3.7
percent, showed the presence or evidence of XMRV.
Bell said the Oct. 8 article in Science was
accompanied by a commentary from virologist Dr.
John M. Coffin of Tufts University. Coffin has studied
viruses for more than 40 years and is known as "The
Father of Retroviruses."
Coffin wrote, "As a first paper, this is as good as it
gets, but it's only a first paper."
Coffin was referring to follow-up studies that will
have to be done, to either confirm and disprove the
findings in the Oct. 8 article.
Bell said he anticipates another half-dozen research
papers on XMRV to be published in the next six to
"This is the way science works. It will get sorted out
sooner or later.
"My personal bias is that this (Oct. 8) paper is so
good, they would not make the simple mistakes,"
If, as Bell anticipates, the follow-up studies confirm
the original results, researchers will not have to start
at square one to determine treatment. Twenty-five
years of clinical trials on AIDS drugs should pave the
way for treatment of XMRV, he said.
AIDS is caused by HIV, which is another retrovirus.
There are pharmaceuticals on the market that can kill
XMRV in a test tube but there are no conclusive
studies done to determine their efficacy on humans,
Bell said if clinical trials are conducted on drugs to
treat CFS, it won't happen in Lyndonville. It will have
to take place at a medical research facility that
would have the staff and resources to perform the
studies, he said.
Bell said he'd like to see, at minimum, a satellite
research clinic established in Western New York so
local CFS patients could participate in the research.
He suggested that CFS patients and their families
contacted their Congressional delegation to lobby for
research to be done in the region.
© 2009 Batavia Newspapers Corp.