ME/CFS -U.S. campaign raises awareness

[Guest guest]

Quotes from

Klimas, M.D - clinician-researcher, Faculty, Dept. of

Medicine, University of Miami School of Medicine and President

of The International Association for Chronic Fatigue Syndrome:

*...If it were called chronic neuroinflammatory disease,

then people would get it, " she said. " Up until now

nobody's been willing to change the name, but now

there's proof [that inflammation occurs in the brain.]

There's evidence that the patients with this illness

experience a level of disability that's equal to that of

patients with late-stage AIDS, patients undergoing

chemotherapy, patients with multiple sclerosis....*

~jvr

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http://www.sun-sentinel.com/news/local/southflorida/sfl-1124chronic,0,4198148.st\

ory?coll=sfla-home-headlines

Chronic fatigue cases finally getting respect

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U.S. campaign raises awareness

BY NANCY MCVICAR

South Florida Sun-Sentinel

Posted November 24 2006

Marly Silverman had a high-energy job as a financial consultant

to a major U.S. bank, until she came down with a viral infection

that she couldn't seem to shake. She was exhausted all the time,

ran a low-grade fever and, lost weight, and then the neurological

symptoms began.

" I would be driving on I-95 and forget where I was going -- not a

good thing, " said Silverman, 52, of Pompano Beach. It took

several months, but eventually she was diagnosed with chronic

fatigue syndrome, the Rodney Dangerfield of diagnoses.

For years, people who complained of the symptoms --

exhaustion, joint pain, sleep problems, impaired memory,

inability to concentrate -- were dismissed by some doctors as

malingerers or hypochondriacs.

This month, the federal Centers for Disease Control and

Prevention launched a campaign to change that by educating

both patients and physicians that chronic fatigue syndrome, or

CFS, is a mysterious but serious disease sometimes triggered

by a viral infection but with other unknown factors.

CFS affects at least 1 million Americans, but many have not

been diagnosed because most doctors have not been trained to

recognize it, said Dr. Reeves, chief of the chronic viral

diseases branch at the Centers for Disease Control. Women

are affected at about four times the rate as men, and nonwhite

women are affected at a rate greater than white women, Reeves

said. The age group most affected is 40 to 59.

Reeves, who leads a CDC research group studying the

syndrome CFS, said the illness follows a pattern of symptoms

that can change over time, and that sometimes disappear and

then come back. Spontaneous recovery is rare, he said.

Treatment plans typically involve doctors asking patients which

symptoms most affect their quality of life -- such as

sleeplessness, joint pain, gastrointestinal complaints or

depression -- and prescribing medications to ease those

symptoms.

" We also found that patients who get appropriate care early in

their illness have a significantly better long-term health outcome

than those who do not, " Reeves said. " This underscores the

importance of this campaign. "

Silverman said public service announcements readied for the

campaign are very effective.

" They show a woman in bed, very tired, and her husband and

kids moving very fast, because that's the way we feel. Life goes

by very fast and we can't keep up with it, " said Silverman, who

started an " empowerment group " called PANDORA to help

other sufferers.

Irwin Auster, who facilitates some of the meetings, said he

sought help from a dozen different doctors for his unexplained

physical pain, but none could figure out what was causing it or

give him anything strong enough to take it away. He began

making plans to stop the pain himself.

" I was on the verge of ending my life, by sitting on the tracks and

waiting for the train, " said Auster, 64, of Boca Raton. Then he

read an article about Dr. Klimas, a University of Miami

School of Medicine clinician-researcher, who treats patients with

symptoms like his.

" I do owe her my life, " said Auster said. " I really do. "

Klimas, who was in Washington for the launch of the CDC

campaign, said research over the past 20 years is beginning to

figure out the biological underpinnings of the syndrome, which

she thinks is badly misnamed.

" If it were called chronic neuroinflammatory disease, then people

would get it, " she said. " Up until now nobody's been willing to

change the name, but now there's proof [that inflammation

occurs in the brain.]

" There's evidence that the patients with this illness experience a

level of disability that's equal to that of patients with late-stage

AIDS, patients undergoing chemotherapy, patients with multiple

sclerosis. "

said Klimas is president of the International Association for

Chronic Fatigue Syndrome, an organization of medical

professionals and research scientists. Its next that will have its

next research conference will be in January in Fort Lauderdale.

" Historically, it's been the lack of credibility in this illness that has

been one of our major stumbling blocks to making progress, "

Klimas said.

" Over the past 20 years, I've treated more than 2,000 chronic

fatigue syndrome patients. I've seen patients who were angry

and defiant, frustrated, trying to convince their physicians, their

families, their friends that this is a real illness. I've seen other

patients who hid their diagnosis because of the stigma attached,

and suffered in silence. "

She and other investigators have shown that different types of

cells within the immune system are abnormal either in number or

their capacity to function in these patients. Klimas said the

biological findings give credence to the disease, but much more

research is needed.

UM researchers, including Ann Fletcher, have just been

awarded new grants from the National Institutes of Health. to

continue their work. One goal is to come up with tests to

diagnose the disease in its different forms, Fletcher said.

" We have fairly good reason to believe that CFS is not a

homogeneous syndrome. There may be several subsets, and it's

important to compare apples to apples. It's possible a treatment

that would work for subset A would not work for subset B, "

Fletcher said.

Klimas and Fletcher are recruiting 150 new patients for a study

that will assess them on days when they feel good and also

when they're feeling particularly bad, so they can compare their

blood samples for differences.

" And if on a bad day they are unable to come to the clinic, we will

send somebody to them to draw their blood, " Fletcher said.

Klimas said even though researchers still don't have all the

answers, there are effective treatment strategies that do help

patients.

" There's no single treatment that fixes the illness, but there are

treatments that do help significantly -- increasing the function of

the patient, and allowing them to engage in normal activities of

daily living, " she said. " It's critical for patients and their health

care providers to know that there is hope and that we can help. "

McVicar can be reached at nmcvicar@...

or .

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http://www.sun-sentinel.com/news/local/southflorida/sfl-rxchronicbox24nov24,0,55\

48043.story?coll=sfla-home-headlines

Chronic Fatigue symptoms

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Posted November 24 2006

Difficult Diagnosis

Chronic fatigue syndrome can cause symptoms so severe that

people cannot function normally. There is no simple test to

diagnose the illness, but researchers, including a group at the

University of Miami, are working on that and on how best to treat

the syndrome.

The U.S. Centers for Disease Control and Prevention says

doctors should consider CFS in patients with six months or more

of unexplained fatigue accompanied by other characteristic

symptoms, including:

Cognitive dysfunction, including impaired memory or

concentration.

* Exhaustion lasting more than 24 hours after physical or mental

exercise.

* Unrefreshing sleep, joint pain without redness or swelling, or

persistent muscle pain.

* Headaches of a new type or severity.

* Tender lymph nodes or sore throat.

Resources

The CDC has more information at www.cdc.gov/cfs. A local

patient group, PANDORA, or Patient Alliance for

Neuroendocrine-immune Disorders Organization for Research

and Advocacy, has a Web site: www.pandoranet.info, or call

.

- McVicar

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http://www.dailyindia.com/show/85589.php/Campaign-to-educate-about-chronic-fatig\

ue

Campaign to educate about chronic fatigue

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ATLANT, Ga., Nov. 24 (UPI) -- U.S. health officials have initiated

a campaign to erase the perception people with chronic fatigue

syndrome are malingerers.

The national Centers for Disease Control and Prevention in

Atlanta opened its information campaign this month to help

educate patients and doctors that chronic fatigue syndrome is a

mysterious but serious disease sometimes triggered by a viral

infection with other unknown factors.

Klimas, a University of Miami School of Medicine

clinician-researcher visiting the CDC during its campaign

kickoff, said chronic fatigue syndrome is poorly named, based

on 20 years of research.

" If it were called chronic neuroinflammatory disease, then people

would get it, " Klimas said. " Up until now nobody's been willing to

change the name, but now there's proof " that inflammation

occurs in the brain.

The CDC estimates CFS affects at least 1 million people in the

United States. Women are affected at about four times the rate

as men, and non-white women are affected at a rate greater

than white women. Symptoms include exhaustion, joint pain,

sleep problems, impaired memory and inability to concentrate.

Copyright 2006 by United Press International