Fibro Conference Today in SLC

http://deseretnews.com/user/comments/1,5150,700258150,00.html

Fibromyalgia conference in Salt Lake on Saturday

By Lois M. Collins

Deseret News

Published: Friday, Sept. 12, 2008 12:19 a.m. MDT

Understanding of fibromyalgia - and even its recognition as a legitimate
illness - has come a long way in the past few years. But the most important
advance is Food and Drug Administration approval of two drugs to modulate
the nerve pain or central nervous pain that marks the illness.

That's according to Dr. Lucinda Bateman, a Salt Lake City doctor who was
treating the condition long before many of her colleagues had stopped
debating whether it's real. She's one of the featured speakers at a half-day
education conference Saturday presented by the Organization for Fatigue and
Fibromyalgia Education and Research.

The FDA approved Lyrica, an anti-seizure drug, and Cymbalta, an
antidepressant, which both modulate the pain associated with fibromyalgia. A
"poor, orphan sister disease," chronic fatigue syndrome, has been less
lucky, she said, because its research has yielded less information, although
high-tech genomic studies are expected to change that.

The two conditions often co-exist.

The film, "Living With Fibromyalgia" has a free screening at 10 a.m.
Saturday at the Broadway Theater, 111 E. 300 South, in conjunction with the
conference, which will be held at the Radisson Hotel, 215 W. South Temple,
beginning at 12:30 p.m. Cost is $15.

You can register online at offerutah.org or call 801-328-8080. Later,
Daneen Akers, who wrote, directed and produced the film with Stephen Eyre,
will discuss it during the conference.

Bateman said Kathleen Light, a researcher at the University of Utah, will talk about her team's research, which has found what may be novel markers for pain and fatigue. It is possible to document the increase in those blood markers when patients with fibromyalgia and chronic fatigue syndrome exercise.

"It's a wonderful demonstration of how patients with these illnesses have to limit their activity or get sick," she said.

Dr. N. Lee Smith of Lifetree Pain Clinic will update diagnosis and treatment
information and Bateman will do the same for chronic fatigue syndrome.

As many as 8 percent of people may have fibromyalgia nationally, the number
being highest among middle-aged women. Bateman said at least 10 percent in
that category of middle-aged women are believed to suffer fibromyalgia,
which varies greatly in severity from one case to another. Estimates are
less sure for chronic fatigue syndrome, and sometimes when people meet the
criteria, a different explainable or reversible problem is found. Bateman
points out that the American health system struggles with complex disorders.

E-MAIL: lois@desnews.com

(People can comment online; Dr Bateman has replied to a person who had said:
"THERE IS NO SUCH THING! Too often this is a catch-all term for a missed diagnosis OR more often, a psychotic disorder."

* * *

I will agree that too often CFS/fibro are used as a catch-all for a missed diagnosis, but that does not mean that all patients with these diseases are misdiagnosed (or psycho).  Some CFS patients were initially misdiagnosed with "atypical MS", which certainly is not understood to mean that MS is a catch-all!  It simply means that the doctor had insufficient information or knowledge to differentiate.

This is why it's important to get your diagnosis confirmed by a CFS or fibro specialist.  Some of the things misdiagnosed as CFS/fibro are things that can be treated.  Why suffer for years thinking you can't be helped when there are things that can be done for some of the lookalike illnesses?

And although there are still plenty of people out there -- some of whom comment in this blog -- who think that these are purely psychotic disorders, there are thousands upon thousands of research studies identifying abnormal physiological symptoms and systems, such as the blood markers to be discussed at this conference.  You can decide for yourself who's truly psychotic: the patients who have numerous demonstrable biochemical abnormalities, or the doctors who insist there's nothing wrong with them!