GBS in The News

GBS in the news…

    • Anonymous
      October 19, 2006 at 11:33 pm


      Meningitis Shot May Hold Higher GBS Risk
      Thursday, October 19, 2006

      ATLANTA — Young people who get a new meningitis shot may be at a slightly higher risk of developing a paralyzing side effect, federal researchers said Thursday.

      Even so, federal health officials said the benefits far outweigh the risk of getting the rare condition, Guillain-Barre syndrome. They are not backing off their recommendation that most students be vaccinated.

      The researchers cautioned that they are uncertain about their risk estimate, and a larger study is being planned.

      They found the added risk was 1.25 cases of GBS for every 1 million doses of vaccine distributed.

      “It’s a very small risk,”said one of the study’s authors, Dr. Robert Davis of the U.S. Centers for Disease Control and Prevention, who noted the risk of getting meningitis without the shot is far greater.

      A federal vaccination advisory committee is to discuss the research next week when it takes a new look at the government’s meningitis vaccine recommendations, CDC officials said.

      The research was reported Thursday in the CDC’s Morbidity and Mortality Weekly Report.

      The vaccine, Menactra, is made by Sanofi Pasteur, which said it tested it in more than 10,000 people. The company reported no cases of Guillain-Barre, or GBS, which is characterized by increasing weakness in the legs and arms, sometimes severe enough to cause paralysis.

      The government approved the vaccine for marketing in January 2005, and the CDC recommended it for routine vaccination four months later.

      About 6.6 million doses had been distributed through the end of September, according to Sanofi.

      The CDC recommends the vaccine for students when they enter high school and college. In particular, college freshmen living in dorms are urged to get the shot because close contact is a major risk in the spread of bacterial meningitis. People ages 15 to 24 have some of the highest mortality rates. Survivors can suffer mental disabilities, hearing loss and paralysis.

      Between March 2005 and September 2006, 17 people developed GBS within six weeks of receiving the vaccine. Fifteen of those were 11 to 19 years old.

      Scientists expect a small number of GBS cases to occur naturally, so the researchers calculated an expected rate of cases and compared it to the rate in the vaccinated people.

      Death or serious illness from bacterial meningitis occurs at an annual rate of about 1.2 cases per 100,000 youths ages 11 to 19, said Davis, director of the CDC’s immunization safety office.

      That means the risk of an unvaccinated youth getting seriously ill from bacterial meningitis is about 10 times greater than the risk of a vaccinated youth developing GBS, according to the study.

      The study data is believed to be flawed, however, in part because GBS reports are voluntary, meaning vaccine side effects may be underreported. Also, the natural rate of GBS is based on hospital data that may be flawed, Davis said.

      A larger study that would give a more accurate picture of the risk is being discussed with the vaccine maker, Davis said.

      As for the new CDC study,”we think the data are inconclusive”and should be interpreted cautiously, said Dr. Gregory Gilmet, Sanofi Pasteur’s medical director of medical affairs.

GBS in the news

    • Anonymous
      May 18, 2006 at 4:54 pm

      Hey, just heard on our local station that a gov. official has been dx with gbs. Betty Montgomery a gov person in Ohio has been dx with gbs after having a respiratory infection. maybe now we might get some much needed gov help because of this. Hope she comes online to see how many people need help with everything from getting insurance coverage to treatments to ssdi, maybe if someone in the state gov sees it first hand she’ll be able to help.

    • Anonymous
      May 18, 2006 at 5:37 pm

      Sorry to hear that anyone ever joins the GBS crowd, but a voice in a postion of power never hurts that’s for sure. Hope she is doing well now.

    • Anonymous
      May 18, 2006 at 6:46 pm

      As Jeremy said, this is a club that nobody should have to join. I wonder if the lady in OH is aware of the GBS Foundation? If anyone knows how to email this lady, perhaps a link to our website is in order…

    • Anonymous
      May 18, 2006 at 7:50 pm

      It is indeed sad when any one has this terrible affliction in there life. Two of the University Presidents here in Idaho also had it. As far as I know neither of them have ever said anything about it in the public arena.

    • Anonymous
      May 21, 2006 at 8:23 am

      I hate to hear about anyone getting GBS or CIDP. Thought I would add a note since “In The News”, TLC aired a story on their show Medical Mysteries a couple weeks ago about a little girl who was ill and they finally (we all know how that goes) dx GBS. She did make a full recovery, once they got the dx and started treatment. It felt good to see something about it on a TV show. They also aired a story, not sure if it was same show as I watch that channel alot, about a boy who wasn’t dx until he was four. He didn’t have GBS or CIDP but another autoimmune disease that responded to IVIG and he now gets an infusion every other week (think I remember that right) and is like 18 and doing great.

      Just thought you might like to hear about those success stories.

    • Anonymous
      May 21, 2006 at 9:46 am
    • Anonymous
      May 21, 2006 at 10:18 am

      From Pam(aquarian) GBS-CIDP website [url][/url] I got this link

    • Anonymous
      May 22, 2006 at 12:09 pm

      My father, who’s now 7 months post GBS onset, tried to visit the family of Betty Montgomery to give them support. He didn’t expect to see Betty, but just wanted to let the family know that he was proof that she’d be okay…and answer many of the questions they are sure to have. Unfortunately, they denied even having her at the hospital (which was listed in the paper), then denied him from even leaving or sending the family his information if they wanted to contact him. It’s too bad, because when our family went through it, it would have been incredibly reassuring to have met a GBSer in those horrible first couple of weeks.


    • Anonymous
      May 24, 2006 at 2:58 pm

      How typical. Hopefully she will break the “mold” and actually speak for us all someday.

    • Anonymous
      May 24, 2006 at 5:37 pm

      Dear “Family” ~ Remember how confusing and freightening our personal experience was at the beginning? I’m sure that, that is exactly where Ms. M and her family are. Perhaps there are security issues of which we are unaware and given time, she may become one of our greatest voices.

    • Anonymous
      May 25, 2006 at 5:44 am

      Read on Yahoo that she is running for Attorney General of the state of Ohio while remaining as State Auditor. Good for Ms. Montgomery.

      Whether anyone is a Republican or Democrat (Ms. Montgomery is a Republican), experience with GBS and the health care system will change her forever. Some biographies of Franklin D. Roosevelt talk about the positive change in his personality after GBS/polio.


    • Anonymous
      May 25, 2006 at 10:47 am

      Hi…I’ll try this again since the last one didn’t seem to take.

      You can set up a “google” alert for GBS and you will receive all articles as they are printed worldwide in your mailbox. I am sure the other search engines have the same service. That way, you can be informed about any topic you wish. I use an alert for “vaccines” as well since that was the etiology of my GBS.