cfs story on local news

Discussion in 'Fibromyalgia Main Forum' started by redsox10, Nov 8, 2006.

  1. redsox10

    redsox10 New Member

    I saw this story at 10NBC in rochester, N.Y. last night and thought you might be interested in it.

    Recognition and support for those with Chronic Fatigue Syndrome

    See News 10NBC Report

    It's the awful illness that has a name people laugh at, it’s Chronic Fatigue Syndrome. Many times people say, “I'm tired, I must have that.” The truth is CFS is so much more than being tired. It's a debilitating illness that affects the body and the mind, often leaving patients unable to work for years, while skeptics’ whisper that it's all in their head. News 10NBC’s own Jennifer Johnson suffered from CFS and knows the pain first hand, as do others in Rochester.

    Those that suffer from the disease fought for recognition and finally got it last Friday in Washington, D.C. The nation's capitol was the site of a dream come true for millions of people, including a Fairport woman, a former NFL player from Brockport and a world-renowned doctor from Orleans County.

    The journey began for Jennifer Johnson in 1994. As a high school sophomore, she was a three-sport varsity athlete and an honor student, who worked a part time job and dreamed of playing soccer in college. Within a few months, she could barely take a shower, cut her food or focus her thoughts.

    Junior and senior year of high school she couldn't go to class and was tutored at home. To make matters worse, getting diagnosed with CFS isn't easy. Doctors wrote notes to Jennifer’s teachers explaining there is no test for the illness. Doctors rule out everything else, and then need to have a majority of these symptoms for six months or more.

    The symptoms of CFS are: Impaired memory or concentration, extreme prolonged exhaustion, unrefreshing sleep, muscle pain, joint pain, headaches, frequent sore throat and tender lymph nodes.

    Many people, even some doctors, didn't and still don't think CFS is real. That's why a 1994 Boston Globe article meant so much to Johnson. It was her story front and center on the Sunday sports page, and it was one of the first main stream articles about CFS. The article prompted thank you notes from other CFS patients, grateful they finally had to proof to show skeptics.

    The article also featured Gino Olivieri, a former NFL player and Monroe County Sheriff. Olivieri was so sick with CFS he could barely lift a glass of water. Robin Durham of Fairport understood the struggle too. “You always think that you're going to get better and go back, for me it's been 11 years and it hasn't happened,” said Durham.

    A 1992 Fairport graduate, Robin wanted to be a lawyer. In an accelerated program, she finished her undergraduate work in three years, but in her first semester at Albany Law School she got sick with CFS. “It's definitely obliterated pretty much any kind of normal life that I would have expected. Having a career and a relationship and children, the normal things that people try to pursue has pretty much alluded me entirely because of this disease,” said Durham.

    Dr. David Bell lives in the small Orleans County town of Lyndonville, but is known worldwide as a CFS expert. People have traveled from Japan, Italy and Alaska to see him. “These patients are completely disabled, they loose their job, they loose their friends, many of them loose their family and no on believes that they are sick because the look relatively well,” said Bell.

    A photo exhibit, along with announcements on tv, radio and print are all drawing awareness to the disease. They are all part of a campaign that was launched by the CDC last Friday in Washington, D.C. “I think we are beginning to open the shroud of mystery that has clouded this illness for a long time,” said Dr. Julie Gerberding.

    Dr. Gerberding is head of the CDC, where researchers are studying CFS. Now top medical schools and newly funded national institutes of health studies are also working to unlock mystery.

    “The bad news is we still don't know what causes it or how to treat it successfully, but the good news is there are now over 4,000 published studies that show underlying biological abnormalities in patients with this illness,” said Dr. Komoraff, of Harvard Medical School.

    There is now proof, these researchers say, that CFS is not a psychological problem.

    While it is depressing living with an illness that some people think is fake, that there is no real treatment for and no answer to if you'll ever recover. The root of it all is physical, researchers have pin-pointed abnormalities in the brain and in the immune system.

    “There is evidence that the patience with this illness experience a level of disability that is equal to patience with late stage aids, patients undergoing chemotherapy, patients with multiple sclerosis,” said Dr. Nancy Klimas.

    Dr. Bell is also featured in the campaign, an effort he calls victorious validation for patients in need. “They haven't been able to convince their congressman or their physician or other people of importance that their illness is real and their lives has just been turned upside down,” said Bell.

    Why did hundreds in Lyndonville become sick with CFS twenty years ago? Why have some have recovered and some have not? Why did Johnson feel better after five years, but Gino Olivieri and Robin Durham still struggle? Researchers are trying to figure out the mystery.

    Until then, it seems the best treatment for CFS is bravery, hope and patience.

    “Even though it's 11 years, I still always have that in the back of my mind that maybe I could, even if I could just work part time or reclaim some small bit of life, I think that's sort of what gets me through,” said Durham.

    The CDC has set-up a website about Chronic Fatigue Syndrome. You can get to the website by clicking on weblinks at the top of the page.

    The website also offers information for other doctors, and patients as well.

    [This Message was Edited on 11/09/2006]
    [This Message was Edited on 11/09/2006]
  2. mollystwin

    mollystwin New Member

    This is one of the best articles I have read on CFS! I am going to cut and paste and send this to all my freinds and family.

    The word is getting around!!!
  3. shar6710

    shar6710 New Member

    Thanks for sharing this.

    I think it's one of the best articles I've seen so far.
  4. redsox10

    redsox10 New Member

    If you go to the station's web site there is a link watch the video of the story.
  5. suz45

    suz45 New Member

    I live in the Rochester area and had the luck to see this story, it was awesome, Jennifer Johnson is a great reporter I watch her all the time and I was thrilled about the attention she brought to these disorders. I know the doctors/chiro that see me have never looked funny at me or were not willing to work with me.

    Maybe up here they are taking all this with more of an open mind. I know my chiro who I saw yesterday for trigger point therapy understood when I told him about of the pain in my hip/back and concern about a flare starting with the weather being bad for the FM/MPS he did his usual thearpy didn't look at me funny never does. Actually he was kind and gentle as always and stated that my left side had gotten worse since my last visit two week ago. He just can't tell me why...but is willing to help me help myself.

    I am glad for this report, it is the only way the public, family members and professionals will ever really begin to deal with us and treat our disorders as real.

    [This Message was Edited on 11/09/2006]
    [This Message was Edited on 11/09/2006]
  6. kholmes

    kholmes New Member

    Excellent article. It feels great to see such thoughtful reporting on CFS in the media, finally!
    Thanks for posting.
  7. lrgatplay

    lrgatplay New Member

    I'm not sure if this video story is just upbeat or somehow demeaning.

    watch the video