What's in a Name? (2) Musings by Dr. Bell

http://www.immunesupport.com/library/showarticle.cfm/ID/8304



Dr. David S. Bell, MD
A Dream Team in the Making:
The Heart and Soul of the ME-CFS Movement
~~~~~~~~~~~~~~~~~~~~~~~~~~~~


by Kristy Katzmann

ImmuneSupport.com

09-04-2007


A profile of David Bell, MD - part of a series
highlighting the accomplishments of ME-CFS New
Name Implementation Committee (NNIC)
members


Dr. David Bell, MD, is a renowned specialist in
pediatric ME-CFS with a private practice in
Lyndonville, New York. He serves on the Board of the
International Association for Chronic Fatigue
Syndrome/ME (IACFS/ME), and in recent years was
appointed chair of the Chronic Fatigue Syndrome
Advisory Committee, which advises the Secretary of
Health and Human Services. Dr. Bell was one of the
first doctors to recognize ME-CFS as a legitimate
medical condition, and has spent more than 20 years
dedicated to patient care and the ME-CFS cause.


In 1985, David Bell, MD, was an established
pediatrician with his own successful practice in
Lyndonville, New York, when his life unexpectedly
took on new meaning. A mysterious illness ripped
through his rural community affecting an
unprecedented 216 people, 16 of whom were
children. “It was fairly striking. At first it looked like
mononucleosis, but we tested them for that and it
was negative,” Dr. Bell recalls. “I assumed they were
going to get better, but then they never did.”


“We studied (the kids), we referred them, we called
the Centers for Disease Control, we sent them to all
sorts of infectious disease specialists, and no
satisfactory answer was ever forthcoming,” he says.
Determined to find answers, Dr. Bell began his
life-long work with this devastating illness, now
known as ME-CFS, by doing his own extensive
medical work-ups on the affected children.


What he found shocked the medical community. His
diagnostic testing concluded that Epstein Barr Virus
(EBV) was not the cause of the outbreak, and
therefore debunked the widely held belief at the time
that EBV is the cause of ME-CFS. “While EBV can still
be a trigger, the illness has evolved into a
post-infectious phenomenon,” explains Dr. Bell. He
continues his “1985 Lyndonville Outbreak” study
today, making it the longest running continuous
ME-CFS follow-up study ever conducted.


Whether ME-CFS chose him or he chose ME-CFS is
unclear. What is clear, however, is Dr. Bell’s
dedication to ME-CFS patients and their difficult
plight. “I can remember one moment where it sort of
fell into place. In the initial outbreak there were
several children who I sent to an infectious disease
specialist, and the report came back that they were
hysterical, that they were nuts…I knew these kids
weren’t nuts,” he says. “That was the first time it
ever hit me so clearly that there was a complete
misunderstanding of this illness.”


According to Dr. Bell, this gross misunderstanding is
largely due to the name (Chronic Fatigue Syndrome)
itself. “I feel that (the name) disrespects patients
and is one of the reasons that the illness is not
taken seriously, and this is a very serious illness,” he
says. “This is a major, major problem, and one of the
worst things about it is the name.”


Ever since its inception in 1988, the name has
wreaked havoc within the patient, medical, political
and public communities. Issues such as disregard,
disrespect, lack of credibility, inadequate medical
treatment and ignorance run rampant. “This is the
reason why so many adults refuse to acknowledge
that they have Chronic Fatigue Syndrome. They don’t
know whether they’re sick or they’re crazy, and they
don’t want to talk to anybody about it because it’s
such a threatening subject,” Dr. Bell says.


So why is the name itself so crucial to the ME-CFS
movement? Dr. Bell believes it boils down to one
thing: respect. “If the illness becomes recognized
appropriately, (patients) will start getting the
respect of their family and of their primary care
physicians. They will start being treated with dignity
which is a very important step,” he explains. “As
soon as patients with this illness are treated with
dignity, it will remove one huge burden from their
shoulders.”


While most everyone can agree that the name needs
to be changed, fierce debate persists when deciding
on the most fitting name for this illness. Although he
has suggestions of his own, Dr. Bell backs the use of
the name ME-CFS (Myalgic Encephalopathy-Chronic
Fatigue Syndrome). “I think going to ME-CFS is a
fairly good first step, but I still think that it needs to
go even further than that,” he says.


Dr. Bell stresses the use of the acronym “ME-CFS”
because it satisfies many different parties, while
also providing an umbrella term that can be further
differentiated down the line. Although he says both
“Encephalopathy” and “Encephalomyelitis” are
medically correct, he thinks a universal consensus is
necessary for progress to be made. He supports the
move to “Myalgic Encephalopathy-Chronic Fatigue
Syndrome,” and is optimistic that others will get on
board to effect positive change.


But the name, in Dr. Bell’s opinion, is not the only
obstacle standing in the way of progress. He
believes that the perception and clinical treatment of
ME-CFS are also major roadblocks. In his new book,
Cellular Hypoxia and Neuro-Immune Fatigue, Dr. Bell
offers a new focus. “The area that I feel is becoming
more important in the research, is that instead of
(ME-CFS) being isolated to a single organ, it’s found
in practically every cell of the body. This is a disease
of cellular energetics, of cellular energy production,”
explains Dr. Bell. “That toxic feeling you get is a
cellular issue.”


His excitement is evident as he talks about this new
strategy and its boundless possibilities. “If in fact
this is correct, then it has very direct implications for
treatment, which would be absolutely huge,” says Dr.
Bell. “We are doing some things here in the office
that I’m very excited about, but it’s much too early
to say that they’re working.” It’s a massive
undertaking, but one he feels is essential to making
progress. “At first I thought, it’s too complicated, I’m
too old for this. But now I’ve gotten very excited and
I expect to spend the next 10 years of my life
reading (about it).”


Although it is a journey he never could have planned
to take, Dr. Bell is immensely grateful for his work
with ME-CFS and remains unfailingly dedicated to the
cause. His voyage has been ripe with surprises,
struggles and rewards, and he wouldn’t have it any
other way. “I’ve learned an incredible amount of
medicine I never would have learned the same way,”
he says. “If a person is interested in something, and
they’re willing to just keep plugging away at it, then
good things can happen,” says Dr. Bell.


“Whether or not that’s going to happen in this illness
for myself or for any of the other people who have
been doing it remains to be seen, but it’s an
important lesson of life - everybody needs to take on
a project that’s good for themselves, and good for
the world, and then stick with it for the long-haul,”
Dr. Bell explains.


In the end, amidst his mountains of research and
stacks of writing, with hundreds of lectures and
interviews under his belt, one thing matters more
than anything else to Dr. Bell: his patients. “Perhaps
my greatest contribution has been that I have stuck
by (my patients) for a long time,” he says. “Even
though I haven’t been able to remove all of their
symptoms, I’ve never lost faith in those particular
people. I’ve never given up on them, and that’s the
only thing that I feel really proud of.”

Tags: CFS, CFS/ME, ME/CFS, Chronic Fatigue Syndrome, David Bell