My News About The Symposium

Hi Liz,

Glad that you had a good time and got to meet everyone. Sounds like a good time had by all of you who met. That’s wonderful.

Now for the Doctors, I cannot believe that they said to take the flu shot. Most recommend never again. I only hope that anyone who decides to take the flu shot does not get GBS again, that would be my biggest fear for those people.

Glad to hear you managed on the trip and it went well. I am a little worried about next time I have to travel on my own. I can wheel myself to baggage claim and am not worried about that as I can always take a break if need be on the way, but I was really worried about how I would get from the door of the plane (after retrieving my gate checked wheelchair) to the top of the jetway as that could be difficult as uphill roll. Good to know that they had someone to help. Did you have to request that or did they just coordinate that when you told them that you had a wheelchair when buying your ticket?

Would love to see any pics anyone has. I wish I could have gone but its too soon in my recovery, medical bills that I gotta pay, and no time off from work right now either. I wish they had this every year as I would plan on going next year but, oh well guess I gotta wait 2 yrs now.

[QUOTE=codystanley]I could not believe it either that all of the doctors on the panel of experts who spoke up recommended that both GBS and CIDP patients can safely get the flu shot. Dr. Lisak stated that the warnings we read and hear about are from pharmacy companies who want to avoid lawsuits.[/QUOTE]

Of course the pharmacuetical companies put the warning in the inserts, because they know how dangerous their vaccines are. That is why most Drs don’t take vaccines or vaccinate their children, they also know how dangerous vaccines are. Believe me I know this to be a fact after working with them for so long. You wouldn’t believe the conversations the doctors have with their staff regarding medications and vaccines or other things they really don’t believe in.

I am still in shock over this.

Well anyway, I’m still glad you got to meet so many nice people.

I find this so disturbing 😮 Do I remember correctly that pharmacutical companies were sponsoring the Symposium?? If so, then of course there would be a ‘push’ to have the flu shot. I am so terribly disappointed that our “experts” would stand behind that recommendation 🙁

As has already been stated on another thread, each one of us will have to make that decision for ourselves. I wish each of you “well”.

[QUOTE=Judi Z]Do I remember correctly that pharmacutical companies were sponsoring the Symposium?? If so, then of course there would be a ‘push’ to have the flu shot.
[/QUOTE]

Just a short comment … I completely agree that the flu shot decision should be made by individuals. But, I have to take the other side of your comment just to provide a different view. This is neither pro nor con flu-vaccine, but regardless, the potential bias expressed above just does not exist.

From an economic perspective, a pharma company would have NO interest in pushing the flu-shot to GBS persons for personal gain. First, a flu-shot costs, at absolute most, $20 … and that includes the labor. Second, the potential audience of the symposium could not even add up to a rounding error on a tiny income statement. Third, GBS itself is so rare, even if every GBS person in the world were targeted for flu-shot, the pharma’s still would not come close to a rounding error in earnings. Simply, they just have no incentive to try and push the flu-shot on GBS patients or their families … it is just too small to ever matter. Additionally, I am sure that their liability with GBS patients and flu-shots would incent them to keep flu-vaccine away from GBS patients.

There simply is no financial incentive for pharma companies to push flu-vaccine at the Symposium, or for the experts to express their opinions as stated from a financial bias.

Note: That does NOT mean that I agree with the experts … I just feel I need to defend them against the potential bias mentioned above.

[COLOR=”Navy”][B]Very respectfully [/B][/COLOR]submitted,
Doug

Judi,

I was there and I have no problem saying that I 100% do not think that the pharmaceutical companies being there had any influence whatsoever on the Dr.’s on the panel nor on the foundation. They went to great pains to keep the companies booths away from the conference area. Those Doctors made their recommendations based only on what they think is best for us, the CIDP/GBS patient.

I heard all of the information that was presented and I will not be getting a flu shot, thats my choice that I am making based on what I know and what I also heard at the symposium.

Jerimy

[quote=Judi Z]I find this so disturbing 😮 Do I remember correctly that pharmacutical companies were sponsoring the Symposium?? If so, then of course there would be a ‘push’ to have the flu shot. I am so terribly disappointed that our “experts” would stand behind that recommendation 🙁

As has already been stated on another thread, each one of us will have to make that decision for ourselves. I wish each of you “well”.[/quote]

liz,
I am so glad you had a good trip. Being new with my dx of cidp i would have loved to go!!!
I just wanted to let all know that i had my flu shot, it has been 3 weeks and i am fine. I was freaking out after reading everybody’s stories AFTER i got my shot. Maybe i was lucky or maybe everybody is different.
lisa

I apologize for setting off such a ‘fire storm’. Apparently, pharmacutical companies/reps have changed their approach. My skepticism was very ingrained from my medical career experiences pre~GBS. I choose not to have vaccinations. Judi

I contracted GBS in August of 2004. I got a flu shot that year at my neurologists recommendation and every year since. The probablility of my contracting GBS a 2nd time seems to me to be quite remote. Not so the flu. My neurologist expressed the belief that with my compromised immune system, I was far more vulnerable to the flu. I have no reason–no evidence on which to disagree with him. I do agree that it is an individual decision If you get the flu, I’ll still talk to you, stay by your side if you need me, help you in any way I can because I’ve had my flu shot.

Judi,

No firestorm, I just wanted to clarify and give my opinion, having been there.

Jerimy

[B]An FYI for everyone, phamacuetical companies are not liable for any serious effects that their vaccines have on anyone.[/B]

They are exempt from lawsuits, but anyone who got GBS/CIDP from any vaccine can collect money from our government. My Frank had a case pending for compensation, but when he passed away the lawsuit died.

We all give our opinions here and we all have said it is your personal choice to take a vaccine. That is what’s so great about these forums, you post your opinion and any facts you have to let everyone know the pros and cons, then you and you alone make your final decision whether to have any vaccine.

[QUOTE=Judi Z]I apologize for setting off such a ‘fire storm’. Apparently, pharmacutical companies/reps have changed their approach. My skepticism was very ingrained from my medical career experiences pre~GBS. I choose not to have vaccinations. Judi[/QUOTE]

Judi,

There is no need to apologize to anyone. You are stating your opinions just like everyone else has. I stand on my opinions and will not apologize because I have given an opinion about any vaccine. I know the dangers that vaccines hold and I for one am againist any vaccine.

I had a great time meeting so many individuals at the symposium. I was afraid it would be a real downer and was so pleaseantly surpried. I learned so much in all the sessions. They mentioned that the foundation would be posting all the handouts on the GBS website that the speakers distributed sometime during the next month.

I attended the CIDP sessions and got all my questions answered. All the doctors were approachable in between talks.

I will summerize me session in the next couple days.

We even found a couple attendees who were in charge of fun! I t was a great time and I feel like I have some new friends, they were all instant friends!

Cindy

did someone say fun :p

Welcome back to our travelers!

To add my two cents to this. While I was in the hospital they went around giving everyone a flu and pneumonia shots. Since I had pheumonia they said to get one every year starting this Winter. I had to question them before they gave me the shots. They were going to give me both! That is when I started to be fiesty and question every move they made! I wanted control back! They told me I was right not to get those shots so soon and to wait till this year.

I am hand or gun shy and don’t even think I will get them this year. I had never had one before and I am a little younger than a senior citizen. Next year I will again think about my options and think about any shots like tetnus etc.

Liz good point brought back from your travels. I am glad to see it bought out so many opinions! Thanks everyone!

No flu shots for me,…..ever!!!!!!!!!!!!!! I am VERY opinionated inre. to this. Yes, everyone has their own opinion (as it should be), but, these vaccinations definitely are a concern for GBS issues!!!!!!!

Per

How I wish I could have been there at the symposium with all of you from the forum. So what if there still isn’t a breakthrough insight in GBS/CIPD or a miracle therapy which would cure us from our discomforts. Just having a nice meal together and even having FUN, well, I would settle for that:) .

Congradulations Liz on you sucessful trip. You are indeed very brave to go it alone.

Liz was such a trooper we wanted to enter her in the wheelchair races!
Cindy

wheelchair races, I would go for that. Had my chair up to speed 5 once, wheew!! My neurologist said NO flu shot.

I have to add to that I was not much for vacinations before I got GBS.

When will they announce the next symposium?

I know on the flu shot it asks if you ever have had GBS.

Two questions:

1) Will they give it to you if you admit you have had it?

2) I have CIDP. Since they are not the same, should I not get the shot? I know this is in the middle of the symposium thread, but the theme has adapted a bit. I find the discussions on this thread interesting to read. Of course, now I’m confused with differences of opinions, but I’m getting used to that with my own doctors!! 😀

Dennis

[QUOTE=Jerimy]Judi,

I was there and I have no problem saying that I 100% do not think that the pharmaceutical companies being there had any influence whatsoever on the Dr.’s on the panel nor on the foundation. They went to great pains to keep the companies booths away from the conference area. Those Doctors made their recommendations based only on what they think is best for us, the CIDP/GBS patient.

I heard all of the information that was presented and I will not be getting a flu shot, thats my choice that I am making based on what I know and what I also heard at the symposium.

Jerimy[/QUOTE]

Hello everyone:

This is my first official post and I am going to say just a few quick words about flu shots and my experience at the Phoenix symposium.

I’m not at the age that I need to worry about taking the flu shot, so I don’t, for now. I’m not afraid of shots or even catching the flu. I think my GBS has made me “healthier,” if that’s possible, in that I have never had more than a slight head cold during any given winter cold season since being diagnosed in 1971 at the age of ten (go ahead, do the math, LOL).

I listened to the doctors at the symposium and it is because they are doctors, and a few of these doctors have been stricken with GBS (I don’t recall any of them having had CIDP), so they have to know what they are talking about and we have to put our “faith” in them and what they’re saying. But, it’s still anyone’s individual call, either take the shot, or don’t, it’s up to you. I understand the fears that a few have spoken about, but realistically, if the flu shot is what it takes to keep one “healthy” during the season, then it makes sense to take it. If, however, one wants to gamble with one’s health during the season, then that person has to handle the “consequences” that might come from not taking the shot. Life’s a crapshoot…, do you want to shoot craps?

About the Symposium. I am so pleased with myself for having taken the plunge and made the decision to travel west (from the east) and participate in the symposium. Aside from meeting so many terrific people, and building on my “family,”(having been a foster child when I was stricken), the day’s events were informative (for the research I will have for my next book) and enlightening (to see the many varients to this disorder and to learn about CIDP as well). I look forward to traveling (in my AFO’s) to the next one in 2008, provided I remain healthy enough to travel.

Take care everyone.

Alex

Hey Alex,

Glad you had a good time and great to see you posting. I hope you continue to come to the forums 🙂

Jerimy

Hi Alex, enjoyed talking with you at the States dinner. Let us know when your book is published and keep in touch.

I was at the forum, in a wheelchair; however, unlike Liz, I had my daughter to help push me around and was able to attend every workshop, which I taped, but haven’t had time to play back because I had skin surgery in Pomona, NY, a long trip on a miserable rainy day. Again, my daughter helped me out.

Regarding flu shots, I will not have them no matter what the experts say. One of the doctors told me that because I have 3 autoimmune diseases I am at risk for another and should have an evaluation done by a neurologist at Columbia Hospital, Dr. Gooch. Plan to talk with my neurologist about it.

Have some pictures which I will post when I learn how to do it. Meanwhile, trying to get ready for a Thanksgiving dinner for 16, another trip to Pomona to have stitches taken out, more doctors’ appointments, a nuclear stress test etc.

Peg

Just stopping by to read a few posts and to thank others for their greetings.

After reading some more about the concern/s about taking a flu shot, I wonder, how serious of a concern should one have over getting GBS/CIDP following a flu shot? Also, if one already has GBS/CIDP (but mainly GBS), can one get GBS again?

I think from listening to the experts at the symposium, the chances are extremely rare…, so why such concern over this? I’m not criticizing anyone over their concern about taking the shot, but…???

Anyway, I’ll try to keep up with the discussions as much as possible, but I am a little busy with writing the next book (only three more parts and a few poems to write still).

Have a great evening and a good weekend everyone.

Alex

Hi there,

I had a flu shot given to me while in the rest home recovering, which shouldn’t have been done. Mainly because they didn’t ask my permission. Came through it alright with no ill effects.
What I see not mentioned by anyone here, about weather or not to get one, is the big factor of exposure. A single shot to a single person should go no furthur then that as far as effects to condition. Should be no worry if your exposure to other people, especially kids, is low or almost non-existent. Should people contact be high, then expect every single disease or flu to be of some threat to an individual. That’s how I navagate not getting one. By staying away from all the other sick people, and the ones sniffing, when ever I’m exposed to them. Pretty easy to spot in a group. The worse group has to be kids in a daycare setting, as far as exposing oneself to trouble. You go out looking for trouble, most will find it. Like us being the ones to never wash our hands after contact with others. Kind of hard to keep up with, but it’s part of protection, so not getting a shot has an equal chance of working.

hi alex, i’m one of those rare cases who has gotten gbs more then once. each onset was acute, and brought on by either an infection or food poisoning. i now have the type of remitting/relapsing gbs-which is also rarely seen-2-3%. it is possible to get gbs more then once-there is no immunity that comes with the first gbs onset. the odds of it reoccurring is low only 2-3%, but it does happen. i don’t go living my life like a hermit because of that fact, and i also don’t go out looking for trouble either. life is way too short to worry about things like that. let us know what the name of your book is when it comes out, best of luck on your endever. take care.:)

Cheryl is “special”

LOL I’m “special,” Cindy’s “special” and Cher’s “special.” Jer, no offense, but I think *you’re* the “special” one. :p

Yeah that’s why I avoid you 3, I think it’s contagious 😉

Jerimy,
You need to behave there is power in numbers!
Cindy

Jerimy, that is so mean! I wasn’t even here to defend myself when you wrote that!

aww I am sorry Shan, not 😉

[B]Sorry, but back to the flu shot …… [/B]

This is a subject that we have discussed so often, and at great length on the forums ….. Having had GBS I know the ‘statistics’ a little better than the ones for CIDP – so I speak from a GBS perspective. As we all know, the chances of getting GBS is 1 – 2 in 100 000. The Swine Flu shot brought a greater ‘awareness’ to GBS. A number of cases have been reported recently of teenagers getting GBS due to the meningitis shot which is now becoming popular for doc’s to give because of the risk of getting Meningitis seems to have become greater lately. But I digress …… The chances of getting GBS is rare – so everyone says. We know that there are people on this forum who have had GBS more than once, and unfortunately Cheryl is on of those ‘unlucky’ people who has the relapsing type. Personally, I have had ‘true’ flu a few times and colds on many occasions. Having the flu shot [B]DOES NOT[/B] prevent me from getting the flu. The shot only protects you from certain strains, and those strains quickly become outdated (for lack of a better word). Unless I am at risk of death, I will certainly not get the flu shot. I doubt I will get GBS again from the flu shot, but there is the very slight possibility that I may. I think the real reason I really dont get the shot is because I dont believe that it is effective to the latest and greatest strains out there. What doctors know about medications and injections is what they read in the little books (darn, cant think of the name) they carry around with them, and what they are told by the pharm. reps. Thank you very much, but I will take my chances ……

Hi Ali,

The book you are referring to for Drs is called:

“Physicians Desk Reference” book. It has all the latest and older medications listed in there for them to read what they need to prescribe it for and the dosages for all ages.

Thanx Donna,

Was caught up in the moment and couldnt think of the correct term used in the US. I worked for a pharmaceutical company in South Africa and am trying to think of the name of the reference book that came out every year and was given to docs, medical reps etc – had a few copies lying around my house for quite a number of years. The acronym was PIMS or PIMMS, just for the life of me cant remember.