I have several comments to make, respectfully, about this topic, as I have read a good deal about it over the two and a half years since I started this particular path in my life.
First, I think the CDC has and presents the best evidence that it available about immunization risks and benefits and I admire that this is scientific evidence (to the best that it published in the medical literature) and that it is thoughtful for a great variety of different groups at risk of complications. The balancing of risks and benefits is, by no means, a black and white, absolutely one-way or the other, situation, and I also admire that this is taken into consideration in the recommendations of the CDC. Also the balance and the data is an evolving field–as the scientific and medical fields learn more about immunizations and about the immune system. In all the literature that I saw in the CDC before the recent publication, they recommended that people with GBS get flu shots unless they got GBS within 4-6 weeks of receiving an influenze vaccination. The reasons were clearly stated–that getting influenza can cause serious illness in anyone with chronic health conditions–including weakness. Influenza is a serious illness in a lot of people, not just the annoyance that most healthy people have. As Canuckgirl says, she had to search on the CDC for this most recent change and I had to search a lot for the reason behind it.
Second, regarding the 311 former GBS patients that got the flu immunization and symptoms, the most important word in this is symptoms. Having increase in symptoms is not the same as having GBS again. Most of us get an increase in symptoms if he/she try to do too much in a day or a week, but that does not mean that he/she has had GBS again–it just means that he/she has not completely healed. The point that only one of the 311 needed hospitaliztion takes that into account–that a slight worsening is part of this disease that has ups and downs, as does CIDP. Some people have on-off GBS, but a lot of us have a recovery with steps of improvement and steps that go in the opposite direction mixed into this. I think it is an accomplishment for there to be more acknowledgement that recovery is complex, as there used to be a lot of literature that said that people got better and almost all fully recovered. Now there is understanding that this takes time and that there are residuals in a lot.
Third, regarding VAERS, it is the best recorded information that we have. I want global decisions made on evidence that is recorded and is trackable, that is scientific–expecially in rare conditions like GBS. Otherwise, we are basing decisions on word of mouth, reports, etc. That does not mean that the experience of people with GBS is not important, it absolutely is and is a call to do more good research in our rare group, it means that looking at what is published and reported is using the best scientific or medical data that we have in a complex situation. It is based on facts that can be checked and not word of mouth or fear.
fourth, regarding pronounciation of Guillain-Barre, in reality there is no “L” sound in Guillain. Because in English, double “ll” does get pronounced as an “L”, it is acceptible to say it both the original and the English way in peoples that speak English. You can listen to it both ways on line at the Marriam-Webster medical website (google this if you care). Phonetically it is ge yan or ge lan with a line over the e since it is a long “e” sound.
Fifth, in reading about influenza and the struggles that humanity has had to make safe vaccine, the swine flu vaccine of 1976ish stands out. The vaccine was made differently than flu vaccines are made today and the big point with this HINI flu vaccine is that it is made like the regular seasonal flu vaccines. No one knows why the previous swine flu vaccine causes an increase (although probably small–still very important as GBS is a very, very serious illness) in GBS, but the best hypothesis is that it had to do with the method of production and that people are not at higher risk of GBS from this flu that has parts of flus that affect humans, pigs, and birds. Equally important in all this is that the flus each year are very different and the vaccines are very different. There are innumerable combinations of the parts of flu and these parts keep mixing so that a person cannot make one immune reaction and not ever get influenza again, but has to make a new (not completely new, but majorly new) immune reaction each time you get a new strain of influenza. This is probably the strongest argument that it may be okay to get another flu shot another year, because what is “presented” to your body is very different than what one got whenever it was that you got a flu shot before. This is why you have to have a flu shot each year–influenza has millions of variations–it is not caused by one thing. Some people definitely relapse after another flu shot, because their immune system must recognize something in common, but most people even having gotten GBS after a flu shot will not get GBS again. This being said, if I had gotten GBS after a flu shot, I probably would not get a flu shot again because in my life, GBS is up close and personally BAD. This is why most of us understand the personal choice to avoid anything that has any non-trivial risk of recurrence.
Last, as a person who works in the scientific and medical fields, it is hard to have people on this site saying so frequently how stupid and unknowledgable doctors are all the time. I understand that people need to vent, but the sweeping generalizations are stressful and hurtful to those that do the best they can to be thoughtful with all the complexity and differences/individuality that is in people and in disease. I admire the dedication and commitment to help in the people I work with. I also am saddened that most nurses and physicians do not stay on this site long, probably bcause it is hard to listen to sweeping generalizations about people that you work with or are. It is never good to group all people in whatever class together–we are all different in many ways–there is not one experience of GBS. Please be respectful.
This is from the MMWR report which is the official recommendation of the Advisory Committee on Immunization Practices (ACIP) regarding seasonal influenza. The report is 52 pages long and earlier in it, it says that the risk of getting GBS from the flu is about 4-7 times greater than getting it from the flu vaccine. It is also worth noting that almost everywhere on the CDC, it states that if you got GBS within 6 weeks of a flu vaccine, you should discuss with your doctor whether to get the flu vaccine again.
“Use of TIV Among Patients with a History of GBS
The incidence of GBS among the general population is low, but persons with a history of GBS have a substantially greater likelihood of subsequently experiencing GBS than persons without such a history (ref. 232). Thus, the likelihood of coincidentally experiencing GBS after influenza vaccination is expected to be greater among persons with a history of GBS than among persons with no history of this syndrome. Whether influenza vaccination specifically might increase the risk for recurrence of GBS is unknown. Among 311 patients with GBS who responded to a survey, 11 (4%) reported some worsening of symptoms after influenza vaccination; however, some of these patients had received other vaccines at the same time, and recurring symptoms were generally mild (ref 247). However, as a precaution, persons who are not at high risk for severe influenza complications and who are known to have experienced GBS within 6 weeks generally should not be vaccinated. As an alternative, physicians might consider using influenza antiviral chemoprophylaxis for these persons. Although data are limited, the established benefits of influenza vaccination might outweigh the risks for many persons who have a history of GBS and who also are at high risk for severe complications from influenza.
MMWR (July 24, 2009) vol 58: 1-52. Prevention and Control of Seasonal Influenza with Vaccination: Recommendations of the Advisory Committee on Immunization Practices (ACIP)”
TIV is the inactivated (dead) influenza shot. Chemoprophylaxis means to use antiviral drugs to reduce the chance of getting influenza or to lessen the severity of the illness. In English, the main point is that if one if not at a high risk of complications from the flu (such as pregnant people, people with serious heart or lung diseases, etc) AND if you got GBS within 6 weeks of getting a flu vaccine, it is generally recommended by this committee that you not get the flu vaccine. People with a higher risk of getting very ill after the flu (such a serious chronic lung disease, etc) probably should get the vaccine to help keep them safe from the serious illnesses associated with the flu, although each person is different.
WithHope for a cure of these diseases.