Remarks from a 2006 Posting…

Dear GBS/CIDP Friends,

This same subject comes up every year. I made a post concerning an Article in the GBSFI Newsletter [Summer 2003] [I]The Communicator[/I] by Joel Steinberg, MD, PhD, [U]Safety of Immunazations for Guillain-Barre Patients.[/U] Dr. Steinberg’s opinion is By and large, the risks of complications from the flu are substantially greater than the small risk of side effects from the flu shot. Accordingly, the flu shot appears to be relatively safe for most candidates for it, including most former GBS patients. However, if your GBS was caused by a flu shot you probably should not get the shot again.

In all cases it’s best to discuss your pros and cons with your family physican for his help and guidance in making the decision.

The Article also discussed 311 “recovered GBS patients” that received a flu shot. My opinions and theories did not agree with the Article. I explained and asked why? Below is all concerning my Posts about that Article:

The GBSFI Administrator did not take kindly to my original post, so I edited it as not to be so harsh and critical of the Author.

Read below.

Jethro
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10-26-2006, 03:38 PM
gbsfi
Administrator Join Date: May 2006
Posts: 64

To Our Discussion Forum Community

The GBS/CIDP Foundation International is appalled at the recent posting with negative remarks to Dr. Joel Steinberg. There are several reasons we find these comments unacceptable and harsh. Dr. Steinberg, himself a GBS patient, has for 25 years voluntarily written all of our educational literature, sits on both the Medical Advisory Board and Board of Directors. He is always available, free of charge to address the needs of all GBS patients.

His dedication is beyond reproach. Our Medical Advisory Board, our “think tank” of neurologists has always respected and supported the work he does for GBS/CIDP patients everywhere.

GBS/CIDP Foundation International
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10-26-2006, 07:06 PM
Jethro
Senior Member Join Date: May 2006
Location: Southern Indiana
Posts: 601

GBSFI Article By Joel Steinberg, MD, PhD

To GBSFI and all Members:

The recent post has been edited. Dr. Steinberg’s name has been eliminated from all comments and the language is less harsh.

However, the statistics remain the same and connot be changed unless GBSFI would like to challenge the theories I used based on “symptoms for GBS” and numbers used by the “CDC on flu shots and GBS”.

Respectfully,

Jethro

P.S. GBSFI has now posted the Article [url]http://www.gbs-cidp.org/newsletters/2003summer.htm[/url]
__________________
Understand your illness. Recovery and progress will require YOUR knowledge of the disease.

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10-26-2006, 05:02 AM
Jethro
Senior Member Join Date: May 2006
Location: Southern Indiana
Posts: 601

GBSFI Summer/2003 Newsletter…

The following is from the Summer/2003 GBSFI Newsletter, The Communicator. Safety of Immunizations for Guillain-Barre’ Syndrome Patients By Joel Steinberg, MD, PhD

Guillain-Barre’ syndrome (GBS) briefly came to public attention in the fall of 1976 when it developed in an unusually large number of people who had received 1976 swine flu shots. More recently, rare mild increases in GBS cases have been associated with influenza immunizations. These events have raised concerns among GBS patients about the safety of immunizations. Most recommendations about immunizations have been derived from experiences with the population at large. The general teaching has been that most former GBS patients who would otherwise be a candidate for an immunization should still likely receive it, with rare exceptions. But what about the actual experiences of GBS patients with immunizations? Through the efforts of our sister organization, the Guillain-Barre’ Syndrome Support Group of the United Kingdom, data was collected from a large body of patients, and reported by Drs. J. Prichard, R. Mukhergjee, and R.A.C. Hughes of Guy’s, of the King’s and St. Thomas’ School of Medicine, Dept. of Clinical Neurosciences, London (J Neurol Neurosurg Psychiatry 73:348-9, 2002). [B]Of 311 GBS patients who, after recovering, received an immunization, only one got sick enough to prevent walking.; ten other patients developed mild symptoms such as abnormal sensations, weakness or fatigue, but they did not require hospital care. Information about exactly what type of disorder these patients developed was not available. However, the low risk of substantial problems, in one patient out of 311, or 0.3%, suggest that most immunizations are safe for most recovered GBS patients.[/B]

The general approach to making a decision about the safety of immunizations is based on comparing the risks of developing an illness and its complications with the risks of developing complictions from the immunization that is used to prevent it. By and large, the risks of complications from the flu are substantially greater than the small risk of side effects from the flu shot. Accordingly, the flu shot appears to be relatively safe for most candidates for it, including most former GBS patients.

If however, a patient’s GBS followed shortly after receiving an immunization, within two weeks or so, it would likely be unwise to receive that immunization again.

Finally, it is likely best for a patient with GBS to wait at least a year after its onset to receive an immunization, in order to help assure that the immune system is now stable and in normal working order. Ultimately, the best approach to decision making about various immunizations is to discuss the pros and cons with the family physician who can take the patient’s individual medical history into account to help offer a recommendation. END

[B]FACTS AND QUESTIONS:[/B]

Quote:
[COLOR=”Blue”]1. Of 311 GBS patients who, after recovering, received an immunization, only 1 got sick enough to prevent walking; 10 other patients developed mild symptoms such as abnormal sensations, weakness or fatigue, but they did not require hospital care.[/COLOR]

[B]So, it appears that 1 person definately had a case of GBS. Now, 10 more with “abnormal sensations (pins and needles), weakness and fatigue”[/B] – this sounds familiar, and any knowledgable neurologist would diagnose GBS after they received a flu shot. [B]So, it really looks like there was 1 confirmed case of GBS and 10 relapses back to GBS from the 311 patients.[/B]

Quote:
[COLOR=”blue”]2. According to the CDC statistics (in 2003), only 1 person in 1 million that get a flu shot will get GBS from the flu shot, or approximately 60 per year (out of 60,000,000 that get the flu shot).[/COLOR]

So, 11 out of 311 doesn’t sound very good when compared with the CDC stats. [B]In fact, that’s about 33,000 times the CDC numbers – wow! And the flu shot is still recommended?[/B]

Quote:
[COLOR=”blue”]3. Information about exactly what type of disorder these patients developed was not available.[/COLOR]

It would appear that all it would have taken is a phone call to find out the information. [B]After all, the data was at GBSFI’s sister organization, the Guillain-Barre’ Syndrome Support Group of the United Kingdom. How difficult could that be?[/B]

Quote:
[COLOR=”blue”]4. However, the low risk of substantial problems, in one patient out of 311, or 0.3%, suggest that most immunizations are safe for most recovered GBS patients.[/COLOR]

[B]Surely GBSFI knew the CDC statistics on flu shots[/B]…and it’s not 1 (which would be more than 3,200 times the CDC number), it’s 11 patients (over 33,000), check the math, and get the records. [B]It sounds like “the dog ate my homework”…how difficult could it be to get the medical data?[/B]

Quote:
[COLOR=”blue”]5. Ultimately, the best approach to decision making about various immunizations is to discuss the pros and cons with the family physician who can take the patient’s individual medical history into account to help offer a recommendation.[/COLOR]

[B]After the eradication of polio, Guillain-Barre’ syndrome is now the most common cause of acute flaccid paralysis worldwide.[/B] One of the main problems is the lack of experience in general doctors, emergency doctors, and some neurologist in recognizing the symptoms of GBS quickly so that treatment can be started. [B]This is because GBS is rare, and asking advice from a family physician about GBS and a flu shot (in my opinion) would be about like asking a pig when Sunday comes. The fact is, doctors are part of the bureaucracy…the money loop that helps protect the need for the useless influenza vaccine.[/B]

As always, these are my opinions.

Regards to all.

Jethro
__________________
Understand your illness. Recovery and progress will require YOUR knowledge of the disease.

Last edited by Jethro : 10-26-2006 at 06:39 PM.