Common Variable Immunodeficiency Support Group
Common variable immunodeficiency (CVID) is a group of 20-30 primary immunodeficiencies (PIDs) which have a common set of symptoms but with different underlying causes. CVID's underlying causes are different, but the result of these are that the body doesn't produce sufficient antibodies in response to exposure to pathogens.
Hello everyone - this is a repost from another forum, but I thought it was important to share with you.
In the interest of brevity I am cutting and pasting a letter that I wrote to the editor and the author of an article in the medical journal "Internist" here in Europe where they advise that live immunizations are ok for folks with CVID (e.g. yellow fever etc.). Well, they are NOT ok...and since sending my letter this afternoon they have already responded to indicate that they will issue a correction.
What is of tremendous concern to me is that I, a layperson, found this error while doing my monthly review of PubMed abstracts for new CVID research. What is worse is that I can imagine that if someone was less inclined to dig into the details than I am, that they might blindly follow the advice of their doctor, who could have pulled this info out of this very specialized article about travel medicine. Therefore all I can say is please please please inform yourself and second guess or at least do some of your own research on things that your doctor tells you to do. Clearly even in what I assume is a peer reviewed medical journal, mistakes happen. Frankly it curls my hair to think of how we basically have to become our own experts with this disease. Ugh.
Here is my letter in case you are interested:
*****************************************
Dear Ladies and Gentlemen,
I would like to respectfully advise you that the article "Reisen mit Immunsuppression" in the recently released 2014 edition of Internist contains a factual error that could potentially be life-threatening to individuals with Common Variable Immune Deficiency ("CVID"). Furthermore I would like to request that you kindly retract and issue a correction for this erroneous information so that individuals affected by CVID are not unduly harmed by the inadvertent reliance by a medical doctor upon the advice contained therein.
On page 263 of the above mentioned article, in the section titled "Reisen mit common variable immunodeficiency syndrome oder ohne Milz (funktion)", the article states "Fuer sie gelten als allgemeine Empfehlungen die Optimierung des Impfschutzes, wobei keine Einschraenkungen fuer Tot- oder Lebendimpfungen bestehen....". The article then reiterates its statement that there are no restrictions in the use of "Lebendimpfstoffe" for CVID patients in the summary table presented on page 264 of the journal. In fact, both the recently released IDSA guidelines (see attached, page 5 paragraph 48) as well as the German Leitlinien for CVID (see page 32 of the attached - note that enclosed version might not be the most current version available) state that live vaccines should be avoided for individuals with CVID. In fact the IDSA goes further and states that there could be risk to CVID individuals from exposure to healthy individuals who have been recently vaccinated with certain live vaccines (see IDSA page 20, Table 8).
I realize that CVID is a complex and rare disorder for which relatively little research exists, and thus I think it is commendable that an effort has been made to address the very practical issue of how affected individuals can best mitigate their health risks while traveling abroad. Nevertheless I think it is of paramount importance that the information presented is in alignment with current medical opinion and guidelines for CVID patients.
I would appreciate it if you could confirm that you have received my e-mail as well as respond to me to indicate that the appropriate actions have been taken to correct this error. Although I am not a medical doctor, but rather only a layperson with CVID, having read this otherwise very interesting article I now feel a moral obligation to my fellow CVID compatriots to ensure that this issue is satisfactorily resolved.
Thank you in advance for your attention to this matter.
Kind regards,
In the interest of brevity I am cutting and pasting a letter that I wrote to the editor and the author of an article in the medical journal "Internist" here in Europe where they advise that live immunizations are ok for folks with CVID (e.g. yellow fever etc.). Well, they are NOT ok...and since sending my letter this afternoon they have already responded to indicate that they will issue a correction.
What is of tremendous concern to me is that I, a layperson, found this error while doing my monthly review of PubMed abstracts for new CVID research. What is worse is that I can imagine that if someone was less inclined to dig into the details than I am, that they might blindly follow the advice of their doctor, who could have pulled this info out of this very specialized article about travel medicine. Therefore all I can say is please please please inform yourself and second guess or at least do some of your own research on things that your doctor tells you to do. Clearly even in what I assume is a peer reviewed medical journal, mistakes happen. Frankly it curls my hair to think of how we basically have to become our own experts with this disease. Ugh.
Here is my letter in case you are interested:
*****************************************
Dear Ladies and Gentlemen,
I would like to respectfully advise you that the article "Reisen mit Immunsuppression" in the recently released 2014 edition of Internist contains a factual error that could potentially be life-threatening to individuals with Common Variable Immune Deficiency ("CVID"). Furthermore I would like to request that you kindly retract and issue a correction for this erroneous information so that individuals affected by CVID are not unduly harmed by the inadvertent reliance by a medical doctor upon the advice contained therein.
On page 263 of the above mentioned article, in the section titled "Reisen mit common variable immunodeficiency syndrome oder ohne Milz (funktion)", the article states "Fuer sie gelten als allgemeine Empfehlungen die Optimierung des Impfschutzes, wobei keine Einschraenkungen fuer Tot- oder Lebendimpfungen bestehen....". The article then reiterates its statement that there are no restrictions in the use of "Lebendimpfstoffe" for CVID patients in the summary table presented on page 264 of the journal. In fact, both the recently released IDSA guidelines (see attached, page 5 paragraph 48) as well as the German Leitlinien for CVID (see page 32 of the attached - note that enclosed version might not be the most current version available) state that live vaccines should be avoided for individuals with CVID. In fact the IDSA goes further and states that there could be risk to CVID individuals from exposure to healthy individuals who have been recently vaccinated with certain live vaccines (see IDSA page 20, Table 8).
I realize that CVID is a complex and rare disorder for which relatively little research exists, and thus I think it is commendable that an effort has been made to address the very practical issue of how affected individuals can best mitigate their health risks while traveling abroad. Nevertheless I think it is of paramount importance that the information presented is in alignment with current medical opinion and guidelines for CVID patients.
I would appreciate it if you could confirm that you have received my e-mail as well as respond to me to indicate that the appropriate actions have been taken to correct this error. Although I am not a medical doctor, but rather only a layperson with CVID, having read this otherwise very interesting article I now feel a moral obligation to my fellow CVID compatriots to ensure that this issue is satisfactorily resolved.
Thank you in advance for your attention to this matter.
Kind regards,
Dianna