Reply To: GBS/CIDP Survey
Dear GH,
The surver was actually in Dec 2003, post titled: What is the susceptible cause of your GBS? The choices of selection were: 1. Contaminated food (Campylobacter jejuni)….5% 2. Gastrointestinal infection….6% 3. Upper respiratory infection (other than the flu)….22% 4. Influenza (the flu)….11% 5. Flu shot….18% 6. Another vaccination….3% 7. Surgery….6% 8. Idiopathic (I have no idea)….27% 9. Pregnancy….2% These were shown on a multi-color bar graph with each cause and percentage – Total votes 100., and was open for approximately 5-6 weeks. The different organizations contacted by letter with a copy of the data multi-color graph were: GBSFI, The Cleveland Clinic, CDC, NIH, and Mayo Clinic…I think that’s it. The following is an example of (and the exact letter to CDC) the letters I sent:
December 22, 2003
Julie L. Gergerding, MD, MPH
Director, CDC and Prevention Administrator
1600 Clifton Road
Atlanta, GA 30333
RE: Guillain-Barre’ Syndrome statistical data
Dear Dr. Gergerding,
I am writing in regard to the current CDC statistical reports on the source causes of Guillain-Barre’ Syndrome. I have statistical data gathered from 100 patients that either now have, or had GBS. Futhermore, the data was from a Forum, and the patients are familiar with the disease and knowledgeable of source causes.
Research usually comes from telephone interviews with patients; outcomes may have missed complaints, or information may have been disregarded due to the patient’s lack of undersstanding of the disease. Other data used to determine statistics is from VAERS, but it is known that a very low percentage (less than 5%) of the actual vaccine adverse effects gets reported. And for some reason, there are known adverse reactions that doctors fail to report and divert, or mask as other causes. Once patients truly understand the disease and source causes that may contribute, they can determine what probably caused their GBS.
We as patients also understand that the true cause has not yet been determined, and the cause is still being researched. But we also understand source causes, even though not a perfect science, can be determined based on the patient’s clinical history and symptoms within the last 2-4 weeks with a reasonable amount of accuracy.
The CDC shows Campylobacter jejuni bacterium as the leading cause of GBS, and as many as 30-40% of all GBS source causes. This may be true in China and Japan, but that does not appear to be so in the USA. There is no doubt that the leading cause of GBS is upper respiratory infections, and the cause may be as high as 30% of GBS cases. The poll taken at the Forum showed 33%, but only 5% of the causes from Cj.
The CDC reports that only one in one million people that get flu shots get GBS from the vacccination, or about 60 people per year. However, in the poll completed by the 100 patients that have/had GBS at Guillain-Barre’ International web link Forum, there were 18% that voted their susceptible cause for GBS was from the flu shot. This was second only tio upper respiratory infections. Assuming the number of people that get GBS are 2/100,000, this would equal approximately 5,600 that would get GBS per year, and of those approximately 18% (or 1000 people) would get GBS from the flu shot. This is a big difference from the currently CDC reported 60. In fact, the poll number of 18% is more than Cj and gastrointestinal infections combined (5 and 6% respectfully), and flu shots also leads influenza which was 11%. This would suggest that chances are greater of getting GBS from the flu shot than from influenza. Something is wrong with the flu shot scenario; vaccination cause of GBS and influenza ratio.
I do not think these poll numbers will shock the world. I do think they represent a large organization’s web Forum, with people that understand the disease. That is why this data is different than data collected by telephone from patients released from a hospital. Those patients really do not understand the complete stages of GBS…IVIg or plasmapheresis, or may not really know which treatment they received, if either. Most know only what their doctors have told them (if told at all), and many doctors have never treated a GBS patient before.
I urge you, and strongly suggest that you review this poll data taken from 100 patients that either have, or had GBS. I think thhis data can be helpful in up-dating the CDC’s statistical data base that is referenced more than any other place for accurate numbers on diseases.
The other 99 people and I believe the statistical data needs to be looked at and are trying to help you provide the world with better information. We are trying to help make a difference with information about our disease.
Thank you for your time and attention.
Yours sincerely,
Jethro
Incl: (1) copy of survey poll data
This letter does not represent Guillain-Barre’ Foundation International-END
P. S. Please excuse any typo errors…I could not copy and paste.
Secondaly: In no way would I try to mislead or discourage my fellow brothers and sisters on this forum. In fact, I encourage each of you to write a letter to the editor of your local newspaper about GBS, and perhaps your story. I write letters to my editor nearly every May (GBS Awareness Month).
Warmest regards.