Expert opinions on vaccines and mitochondrial disorders

7 Nov

ResearchBlogging.orgThe Hannah Poling case has raised many questions about vaccines and metabolic disorders (of which mitochondrial disorders is a subset). Which is a way of saying, yes, the paper we are about to discuss covers more than just mitochondria. But, would you have read this if you saw the title of the paper:


Attitudes regarding vaccination among practitioners of clinical biochemical genetics

But, don’t let that stop you. The paper takes a look at questions asked by many since the Hannah Poling case went public:

The issue of vaccination in patients with diagnosed—or undiagnosed—metabolic disease has been an important question for those of us who care for patients with inborn errors of metabolism, but has come to the fore recently as an item of general interest.

While it is acknowledged that there is a lack of hard data on many questions, the paper’s authors polled experts in the field with a series of questions about vaccines. For experts, they chose members of the Society for Inherited Metabolic Disorders (for which there were 379 email addresses: that gives us an idea of how specialized this field is). They received 111 responses. But, it is worth noting that they requested one response from each group, not individual, so they consider this to be a fairly complete response.

So, what do these experts think about vaccines and their patients with metabolic disease (mitochondrial or otherwise)?

When asked, to respond to the position: ‘‘I view the risk of vaccination in known metabolic disease patients to generally be outweighed by the risk of the infectious diseases being vaccinated against”

63.2% strongly agreed
31.1% agreed
0.9% disagreed
and 0.9% strongly disagreed.

Asked about the opinion that the risk of vaccination in metabolic disease was ‘‘greater than the risk of the infectious diseases being vaccinated against”

52.9% strongly disagreed
40% disagreed
3.5% agreed
and none strongly agreed

One idea that has been floating around the autism blogosphere and discussion groups is that metabolic specialists prefer an alternate vaccine schedule. Well, only 21.3% said that they recommend the routine vaccination schedule, it is true. But, 73.1% use the routine schedule plus the annual influenza vaccination. 5.6% recommended a modified schedule. If you’ve been adding this up in your head, you already know that none indicated no vaccination.

Since this is such a key question, let’s repeat: over 90% use the recommended schedule or the recommended schedule plus the flu vaccine.

Similar trends were noted for live-virus vaccines:

45.7% recommending restriction of the practice for none of their metabolic disease patients
44.8% for a few
6.7% for most
2.9% for all of their patients

A big question that comes up often is “how many Hannah Polings are there?”, which in this community is a fairly narrow question of “how many people have had adverse reactions to vaccines resulting in autism or autistic-features”. The paper asks the more broad question, how many groups have seen a patient suffer “long-term deterioration or adverse outcome attributable to a vaccination:

78.3% ‘‘never”
8.5% ‘‘once”
12.3% ‘‘seldom”seen this in a patient

Again, this is not to say that autism or autistic features were seen, or that mitochondrial disease was the metabolic disorder linked in the deterioration. The group is more broad than that.

Now, the flip side of that coin: how many groups have seen long term deterioration from a vaccine preventable disease:

48.5% replied they had ‘‘never” seen this
12.1% ‘‘once”
33% ‘‘seldom”
3% ‘‘routinely”
3.0% ‘‘frequently seen this in a patient

Asked if whether ‘‘the benefits of the current vaccination schedule outweigh the risks to patients with undiagnosed metabolic disease in the general population,”

64.8% strongly agreed
27.8% agreed
4.6% disagreed or strongly disagreed

An open ended question was posed as to whether there were ‘‘reasonable health policy changes you would make regarding undiagnosed metabolic disease patients”. 43 groups responded, 29 said no, 4 said “no” or “not sure” and 1 suggested adding additional influenza and/or pneumococcal vaccine. A few stressed evaluation by IEM specialist in any case with deterioration after vaccination.

There is some more. All good stuff. But, I am at risk of basically copying the entire paper here if I add it.

If there is one thing to take away from this, it’s the concluding paragraph:

In summary, it is clear that the general opinion held by practitioners in the field of Clinical Biochemical Genetics favors the full schedule of vaccination for their patients. The overwhelming majority also feel that the benefits of the current schedule outweigh the risks to individuals with undiagnosed metabolic disease. Most have never observed any significant adverse event which was attributed to a vaccine reaction. Some respondents have seen the association once or seldom in their careers, but none felt it to be frequent. The fact that there were few encountered events of long-term deterioration due to a disease for which vaccination is available probably simply reflects the low incidence of those diseases, due to the effectiveness of vaccination practices. A panoply of questions remain, however, and there is a great need for more data.

B BARSHOP, M SUMMAR (2008). Attitudes regarding vaccination among practitioners of clinical biochemical genetics Molecular Genetics and Metabolism, 95 (1-2), 1-2 DOI: 10.1016/j.ymgme.2008.08.001

18 Responses to “Expert opinions on vaccines and mitochondrial disorders”

  1. lacshmiybarra November 7, 2008 at 17:35 #

    Sullivan,
    Come on you know better than this:
    1. There are very few mitochondrial experts
    2. It is very difficult to get referred to one.
    3. It has always been a theory that vaccination was better than the disease. This makes sense based on the fact that a common cold could cause a regression. It does not makes sense however, when adding multiple vaccinations or more than one live vaccination for the very reason that a common cold can cause regression.
    4. Mitochondrial experts are not in charge of the vaccine schedule but you can bet they will start paying attention now.
    5. More and more people are being found to have mitochondrial disfunction that were previously not referred or thought to look “too good” to have the disorder.
    6. The time begins now to start looking and asking the question in this group that had not been asked.
    7. Finally, go read Neurology today. No one but DiMauro was reluctant to admit that it is possible–no one has been looking.

  2. Patrick November 7, 2008 at 18:16 #

    People want to go around using Hannah’s situation as a representative background for mito problems, she was not. Even from AoA itself “received five shots (nine vaccines) at once to catch up.” So people come up with even more extreme siutations, perhaps the worst they can find in teh literature, to try and make it look like they actually understand, which they dont … “common cold can cause regression.”

    She wasn’t being submitted to the regular schedule at all.

    The mito Expert Groups support the regular schedule, especially for mito patients!

  3. Patrick November 7, 2008 at 18:26 #

    Excuse me, but I should have referenced metabolic disease versus mitochondrial disorder in the last sentence. And undiagnosed metabolic disease in the Especially group.

  4. Sullivan November 7, 2008 at 19:56 #

    Sullivan,
    Come on you know better than this:

    Could you be a little more specific about “this”? I don’t mean that flippantly, but I’d like to make sure I am responding to the correct sentiments. I am somewhat confused as I tried to add as little to the above as possible–quoting from the original and adding emphasis (in the quotes).

    The basic thesis is: there is a lack of studies; in place of that they are polling clinicians; most clinicians support vaccination even in people with diagnosed or undiagnosed metabolic disorders.

    1. There are very few mitochondrial experts

    Agreed. I tried to emphasize that in the above post.

    2. It is very difficult to get referred to one.

    I have no direct knowledge of that. But, I find that to be highly likely.

    3. It has always been a theory that vaccination was better than the disease. This makes sense based on the fact that a common cold could cause a regression. It does not makes sense however, when adding multiple vaccinations or more than one live vaccination for the very reason that a common cold can cause regression.

    Well,

    4. Mitochondrial experts are not in charge of the vaccine schedule but you can bet they will start paying attention now.

    Yes, I believe there is a study already in the works on mitochondrial disease and vaccines–at least in the planning/scheduling stage.

    At the same time, I would bet that the mitochondrial experts pay very close attention to the vaccination status of the public at large. At least the ones I have contacted do. The idea of “community immunity” to protect the vulnerable is quite on the minds of these teams.

    5. More and more people are being found to have mitochondrial disfunction that were previously not referred or thought to look “too good” to have the disorder.

    Yes. I believe we will hear more about that in the not too distant future. However, I think the discussion will be far more complicated than a single line can do justice.

    6. The time begins now to start looking and asking the question in this group that had not been asked.

    There are multiple questions–so I’d be interested which one you are thinking of here? There are questions of (a) can vaccines cause dysfunction where none existed before? (b) can vaccines act as the transient stressor to precipitate a crisis in someone with pre-existing dysfunction? (c) can you screen for the vulnerable in (b)? (d) If vaccines do precipitate crises, what is the mechanism?

    7. Finally, go read Neurology today. No one but DiMauro was reluctant to admit that it is possible—no one has been looking.

    Thank you for pointing that out. I assume you mean the article Questions About Links Between Mitochondrial Encephalopathies and Autism Raised in National Meeting. as I think that is the only one quoting DiMauro.

    He is quoted as stating that the dots aren’t connected (an analogy he’s made elsewhere).

    But, his position as I understand it has been that while there is no evidence that vaccines cause mitochondrial disorders, they could be a stressor that instigates a crisis. I believe he thinks that research is warranted in that area.

  5. Schwartz November 8, 2008 at 03:11 #

    Sullivan,

    First, you misread point #7 above. The point is that only DiMauro was reluctant to admit that there was a possible connection. The others acknowledge that there could be a connection.

    Since I don’t subscribe to the journal I don’t have access to the full text, but I’m curious who funded the study.

    The basic thesis is: there is a lack of studies; in place of that they are polling clinicians; most clinicians support vaccination even in people with diagnosed or undiagnosed metabolic disorders.

    Taking all this in perspective, there isn’t much value in any sort of “expert” opinion if the experts have only a fraction of the data required to reach any conclusions.

    So why exactly are we interested in their guesses?

    1) They haven’t even been exposed to these cases they’re guessing about (i.e. undiagnosed).
    2) They don’t have any good explanations for the described behaviour.
    3) There is evidence that the prevalance numbers in their own specialty are likely underestimated by a good margin?

    Since anecdote rates at about the same level as expert opinion in evidence based medicine, we can safely conclude that guesses from experts without data ranks even lower.

    Orac would call that crankery, but I still call it an interesting study of expert opinion and training.

  6. Joseph November 8, 2008 at 03:30 #

    So why exactly are we interested in their guesses?

    Clearly, Sullivan was countering speculation about their guesses, which actually were different to their actual guesses. Not that it comes as a surprise. For example, the opinions of pediatricians about the “autism epidemic” are often misrepresented.

    Since anecdote rates at about the same level as expert opinion in evidence based medicine

    Nah. You must be referring to case reports. Case reports are not the same as anecdotes. I’d say they are at least a notch above anecdotes.

  7. Sullivan November 8, 2008 at 05:09 #

    Schwartz,

    you seem to be arguing two sides at once, but let me point out two fundamental flaws that make answering you point-by-point moot.

    1) This is not a study. This is a report of a poll. The authors certainly didn’t pose it as such, and I hope it was clear in my presentation that I don’t consider it a “study” either.

    2) Notice the plural of “opinions” in the title of this post. You keep try to compare these with a singular opinion or, worse, an anecdote. As a plural, with very large majorities, these become a “concensus”. As such, it is at a significantly higher level than a singular “expert opinion”.

    We could go into more details about whether an expert opinion is significantly different than an anecdote (it is) or whether you can read Orac’s mind (you can’t), and other details. But, what’s the point if your very premise is flawed?

  8. B Campaigne November 8, 2008 at 17:51 #

    So?
    What causes Autism?

  9. Schwartz November 8, 2008 at 21:28 #

    Joseph,

    Nah. You must be referring to case reports. Case reports are not the same as anecdotes. I’d say they are at least a notch above anecdotes.

    Fair point on anecdote, but case reports is a higher bar. Specific clinical experience with patients is plenty sufficient.

    Clearly, Sullivan was countering speculation about their guesses, which actually were different to their actual guesses. Not that it comes as a surprise.

    Not so clearly at all. It was represented as a paper that answers some of my questions. I certainly didn’t ask any questions that can be answered with guesses by experts in “clinical biochemical genetics”. I’ve already had plenty of occassion to read many of their guesses and speculation in the various articles that have been published since the beginning of the year. Like it states, it is an interesting discussion of attitudes.

    It has no scientific value whatsoever.

  10. Schwartz November 8, 2008 at 21:48 #

    Sullivan,

    As a plural, with very large majorities, these become a “concensus”. As such, it is at a significantly higher level than a singular “expert opinion”.

    Now that is a false statement! You are implying that scientific consensus ranks higher in the evidentiary scale than actual evidence like clinical experience? Not at all. Scientific Consensus is a matter of attitude or opinion at a particular point in time. It has no scientific value without evidence, nor is it even part of the scientific method.

    Your scientific consensus based on attitudes without evidence or experience is pretty pointless, unless one is interested in what certain groups of people are guessing.

    We could go into more details about whether an expert opinion is significantly different than an anecdote (it is) or whether you can read Orac’s mind (you can’t), and other details. But, what’s the point if your very premise is flawed?

    I never said expert opinion was the same as clinical experience (a form of anecdote, by doctors, but anecdote was the improper term). I just stated that the level of evidence in terms of Evidence based medicine was the same.

    And I don’t need to read Orac’s mind, we’ve all got plenty of public posts that clearly describe many of his inconsistent positions.

  11. Schwartz November 8, 2008 at 21:49 #

    Sullivan,

    This is not a study. This is a report of a poll. The authors certainly didn’t pose it as such, and I hope it was clear in my presentation that I don’t consider it a “study” either.

    You did refer to it as a paper twice so it is clear. My comment “but I still call it an interesting study of expert opinion and training.” is confusing but was not referring to an actual study, but the study of something (i.e. the study of law, or the study of specialist training/opinion).

    Notice the plural of “opinions” in the title of this post. You keep try to compare these with a singular opinion or, worse, an anecdote.

    I am quite aware of the plural as I used the term guesses several times.

    My point is that in Evidence Based Medicine, the quality of evidence of Expert Opinion is at the same level of quality of clinical experience (i.e. a practitioner reporting on Autistic regression after vaccination). Given that this paper is merely an aggregation of the attitudes of experts on a topic for which there is little data or experience, the quality of evidence doesn’t even reach the minimum level.

  12. Sullivan November 13, 2008 at 01:01 #

    Schwartz,

    A paper is not a study. I referred to it as a paper as it is in a journal. That does not make it a study.

    <blockquote cite="" >Now that is a false statement! You are implying that scientific consensus ranks higher in the evidentiary scale than actual evidence like clinical experience? Not at all. Scientific Consensus is a matter of attitude or opinion at a particular point in time. It has no scientific value without evidence, nor is it even part of the scientific method.

    Which–as you are likely aware–is a great argument for you to take to ARI/DAN! and all the people who rely on their opinions to state that vaccines cause autism without evidence.

    The difference here is that this paper relates the consensus opinion of basically all of the groups in the field of metabolic medicine.

    DAN! likes to pretend to have a consensus, but they tend to be self-selecting. If they were to poll all of the pediatricians and report those results, it would be much more informative than only polling their membership.

    Anyway, you comment is confusing. You are trying to paint this paper as somehow being a "scientific" consensus and that being less than a "clinical experience"? Did you miss the part where this is a report on clinical experiences? The vast majority of those polled were clinicians.

  13. alyric November 13, 2008 at 17:19 #

    Amazing! Give ’em a paper chock ful of clinical data, which is what this little marvel is and the Danite doesn’t like it? I thought that ‘clinical’ had extra special clout with this crowd. Only up to a point it seems.

  14. Schwartz November 14, 2008 at 03:40 #

    A paper is not a study. I referred to it as a paper as it is in a journal. That does not make it a study.

    Read the post again. I’m agreeing with you. It’s not a study. It’s a paper. The paper is a study of opinions, but not a study in the formal sense. Two different uses of the word.

    Which—as you are likely aware—is a great argument for you to take to ARI/DAN! and all the people who rely on their opinions to state that vaccines cause autism without evidence.

    The difference here is that this paper relates the consensus opinion of basically all of the groups in the field of metabolic medicine.

    You’re changing the topic again to avoid defending your inaccurate statement. Where did DAN come into this? You made a statement that the aggregated opinion was equivalent to scientific consensus and that the scientific consensus had a greater weighting than clinical experience. That is not at all true.

    As I stated, scientific consensus has no evidence value on it’s own and does NOT rank higher than clinical experience in Evidence Based Medicine. Why are you discussing what someone else is saying?

    Anyway, you comment is confusing. You are trying to paint this paper as somehow being a “scientific” consensus and that being less than a “clinical experience”? Did you miss the part where this is a report on clinical experiences? The vast majority of those polled were clinicians.

    I didn’t paint it as scientific consensus, you did! I pointed out that this is an aggregate of attitudes and opinions based on little or no clinical experience with the target group in question.

  15. Schwartz November 14, 2008 at 03:41 #

    alyric,

    Hmm, somehow attitude got transformed into clinical data? When did that magically happen?

  16. Robert Nowinski March 26, 2009 at 08:33 #

    Interesting studies. Thank you for putting this information together and taking out the key questions, responses, etc!

  17. ImHeather February 11, 2012 at 10:32 #

    My twins were both deaongsid with a mitochondrial disorder around age 2.5 (shortly after being deaongsid with autism) but their markers weren't consistent with "mitochondrial autism" and they never experienced regression – there were delays from the beginning. I think that goes against the findings of that paper? You did a great job explaining it! Thanks.

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