Monday, November 7, 2011

And another SSPE case: Angelina is dying

I had seen girl previously on a board, but the parents had not gone public until now, after Natalie's death.

Angelina caught measles in 2006 from an adult, when she was 7 months old. She recovered well - this is her before SSPE broke out:



This is her now:



Gina, Angelina's mum says (my translation):

"In February of this year, we noticed pronounced problems with our daughter. She kept falling off her bike, and had speech blockades. When this was getting worse, we went to the clinic. The diagnosis SSPE was a shock for us. Our child became dependent on care within 8 weeks. She cannot walk nor speak and needs to be tube fed. She would have entered school this year. This blow of fate is very hard for us all."


According to Sean Monks, spokesperson of the German Association of Pediatricians, this is the third case of SSPE from measles infection in infants in 2006 - in 2006 a total of 313 infants with measles were reported to the RKI (German CDC equivalent) in Berlin. One of these children died in 2007, another has been suffering from SSPE since 2009, and now Angelina is the third victim from that year.

Importantly, this shows that the risk of SSPE is much higher than previously thought. Overall risk for SSPE had recently been adjusted to about 1 in 11'000 notified cases of all ages, and "at least" 1 in 2'000 for infants (German pdf). From 2005 to 2010, 27 patients died of SSPE in Germany, although measles incidence had been sinking to reported numbers under 2000/year for some time. The current cluster of SSPE cases indicates that the risk of SSPE for infants who contract measles lies closer to 1 in 200.

Research has not yet identified the causative mutation for SSPE (see for example here) nor found strains with a particularly high risk of causing SSPE which could explain this high incidence. What is clear is that all cases in which measles virus has been amplified from the brain of SSPE victims, it was the wild type rather than the vaccine virus, and that with increasing vaccination coverage, SSPE incidence sank (see for example here and here, for review here).

The only way to prevent more SSPE cases is to vaccinate your child against measles (2xMMR) and to check your own immunity if you are unsure of your history of measles/measles vaccination. Your immunity protects those too young or too sick to be vaccinated. Your decision not to vaccine could cost lives, not necessarily yours.

45 comments:

  1. So sad and heartbreaking; especially since we know the inevitable outcome of SPPE.

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  2. A ~1:100 SSPE case ratio in infants is alarmingly high. I wonder if it is better vigilance and diagnostics and if so, how many cases went undiagnosed prior to mass vaccination or in areas where SSPE is simply not tested for? This is truly heartbreaking.

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  3. I would also deduce significant under-reporting of measles cases from these numbers.

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  4. One of the things limiting research into the specific viral mutations that lead to SSPE has been the shortage of cases.

    Back in "the good old days", when everybody got measles, there were thousands of SSPE cases available for study, but the ability to sequence the viral genome had not yet been developed. Now, it appears that the "good old days" are coming back and researchers will once again have plenty to study.

    How sad that we should be facing the return of epidemic measles because of the hubris and greed of one man.

    I should also point out that there is nothing about the measles vaccine strain that would prevent the types of mutations reported from SSPE cases (all of which originated from wild-type measles virus), so the decline in SSPE incidence (to zero, in some countries) after introduction of the measles vaccine indicates that the measles vaccine strain is probably incapable of causing SSPE.

    I sincerely hope that the apparent "new" incidence of SSPE turns out to be the result of under-reporting of measles. However, since measles virus is an RNA virus (and they mutate rather rapidly) it is entirely possible that a "mutation-prone" strain of wild-type measles is circulating. If so, leaving your children unvaccinated would be a very bad idea.

    Prometheus

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  5. Prometheus - the wild measles causing SSPE is like the white swan - whenever virus from the brains of SSPE-deceased was amplified, it was wild virus. This doesn't exclude the (rare) existence of a black swan (vaccine virus induced SSPE). Vaccine virus has caused the similarly devastating MIBE in immuno-suppressed children. One of the toddlers who died soon after measles infection in 2006 had an immune-deficiency, which is why he had not been vaccinated and had to rely on herd immunity....

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  6. Catherina,

    True enough - I haven't "run the numbers" to see if there have been enough vaccine-strain MIBE cases identified to give a reasonable probability of finding a case of SSPE from the vaccine strain.

    The best studies have established a pre-vaccine-era SSPE incidence of 4 - 11 cases per 100,000 measles infections (18 per 100,000 in children infected before 1 year of age).

    The incidence of MIBE is a bit harder to pin down, but it is somewhere in the range of 30 to 50 per 100,000 cases of measles, depending on how much of "measles encephalitis" (about 100 per 100,000 cases) is MIBE.

    Given these two admittedly rather dodgy figures, we could expect to see - following wild-type measles infections - one case of SSPE for every 3 - 13 cases of MIBE.

    Given that no case of SSPE has yet been shown - through sequencing - to be caused by vaccine-strain measles, despite what must by now be hundreds of vaccine-strain MIBE cases (almost all in immunosuppressed patients), it seems that (keeping the "black swan" parable in mind) we can cautiously say that the vaccine strain of measles appears less prone to SSPE-causing mutations than it's wild-type relatives by a few orders of magnitude.

    Of course, if we limit our scrutiny to just those MIBE cases without known immune deficiency, then we probably haven't got enough cases yet for a single case of SSPE to be statistically expected. Personally, I see that as a good thing - despite millions of doses of measles vaccine given each year, we still haven't found a case of vaccine-strain SSPE. That's much better than the wild-type strain.

    The problem is that we're comparing apples to oranges here. Historical data about the incidence of MIBE and SSPE is likely skewed in favor of more reporting of SSPE (which is late onset and slowly progressive, giving more time for diagnosis and consultation) and less reporting of MIBE (which is more acutely fatal and might be mistaken for something else or simply not diagnosed at all). In addition, since "everybody" (greater than 95% of the population) got measles back in the pre-vaccine days, measles wasn't always reported, meaning that the historical data probably inflate both SSPE and MIBE incidence.

    But, in the end, none of that might matter at all.

    Today, most of the world's measles infections are happening in desperately poor nations, with only a relatively minor number of cases occurring in countries that have the resources to diagnose and study the infection.

    In those developed countries experiencing measles outbreaks, the population at risk is very different - large numbers of children under 1 year (too young to be vaccinated) and immunosuppressed people along with a smattering of unvaccinated adults and older children and people whose vaccinations didn't "take" or who -for other reasons - no longer have sufficient antibody levels (but not necessarily zero antibody levels).

    As a result, it's probably not valid to try and predict the incidence of MIBE and SSPE from measles outbreaks in developed countries using historical records or data from outbreaks in countries with nil to poor vaccination coverage. Germany's SSPE incidence may represent under-reporting of measles or it could reflect the fact that more very young children are exposed - relative to the total exposed and susceptible population - than happened in times or places where/when there is/was no vaccine uptake.

    Clearly, we need to do more research to get a firm grasp on the MIBE and SSPE risk, but I fervently hope that we don't get the "clinical material" for that study, because I know the suffering it costs.

    Prometheus

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  7. Good comments, Prometheus.

    Measles has always been under-reported as per CDC's comments that there were once 4 million cases a year. Given that countries which do serological surveys used to find that by the age of 14, nearly 100% of adolescents were immune to measles, it can be assumed that each outbreak, a number larger than that country's annual birth cohort would be infected, and that there are far more subclinical measles cases than has ever been commonly admitted to.

    The other relevant issue is that as Bale et al found in Africa http://www.ncbi.nlm.nih.gov/pubmed/21753261
    "The risk of measles was significantly higher among children born to younger mothers. The children of younger mothers had also lower maternal antibody levels at 4.5 months of age. This most likely reflects that there are more vaccinated than naturally infected mothers in the younger age group since the initiation of vaccination programs for measles 20 to 25 years ago."

    Which leads to the concern, as Tishon states http://www.ncbi.nlm.nih.gov/pubmed/8898755 that measles is much more dangerous in young babies who previously, would have had immunity for much longer - in developed countries as well - and would have been less likely to be exposed at such an early age.

    More research is needed using both MIBE and SSPE infections to find out why the immune system of the children who get either, doesn't work correctly. That research might also help shed "lateral" light on other diseases which affect children whose immune systems are different, including all bacterial invasive diseases.

    There is enough in the medical literature and Gregory Poland's work on vaccinomics using measles, HIb, Hep B etc, to show that the people who get these diseases seriously, are the ones whose immune systems are dysfunctional somewhere.

    Germany has never had a 0% vaccination rate. They had a relatively good record with single measles vaccines, and some do get the MMR.

    Of course, that's not seen as "a problem", when all vaccines viewed as so inherently safe that the current solution to that is simply to makes sure you vaccinate everyone with MMR more often and earlier.

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  8. "Of course, that's not seen as "a problem", when all vaccines viewed as so inherently safe that the current solution to that is simply to makes sure you vaccinate everyone with MMR more often and earlier."

    "That" being babies being so much more susceptible to measles and complications if they contract it at a much earlier age than they ever would pre-vaccine.

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  9. actually, the number of infants who died of measles in pre-vaccine times is still higher than the number of infants who *catch* measles today (in the US). The 2xMMR strategy is tremendously successful!

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  10. In pre-vaccine times, doctors didn't know how to treat measles and about vitamin A. And many of the statistics on mortality with measles are in malnourished countries. Why do the vaxers always haul out the one big sob story to gain support for vaccination? Yes this is a tragedy, but it is ONE story that we do not have complete details on. I could just as well show you a child in a coffin after measles vaccine, or in a helmet because of the new seizure disorder, or with poop smeared all over themselves because the autism and bowel disorder. Do you know anything about immunity? Do you know that measles vaccine, while it does suppress measles in populations, the vaccinated are MORE likely than the naturally immune to be secondarily infected and spread the disease, just like pertussis? Read Damien's papers and stop your fear mongering with one-case stories.

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    1. I can't even reply to something as silly as your post.

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    2. The stupid!!! It burns!!!!

      Have you looked up how many people die of vaccine preventable diseases like rabies, measles, pertussis, etc today? Look it up on the WHO website.

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  11. In pre-vaccine times, doctors didn't know how to treat measles and about vitamin A.

    This isn't relevant to developed countries where vitamin A deficiency isn't a problem and yet the mortality rate of measles is still 1-3/1000 - 1/5000.

    And many of the statistics on mortality with measles are in malnourished countries.

    Last I checked, Angelina is in Germany and there are also these current statistics: 26,000 cases in Europe as of September, 2011, 14,000 cases and 6 deaths (not including hundreds of severe complications) just in France. http://www.travelhealth.gov.hk/english/outbreaknews/2011/ond05september2011.html

    Why do the vaxers always haul out the one big sob story to gain support for vaccination?

    It is called consequences of not vaccinating and obviously makes you uncomfortable. And here you trot out your own made-up stories; surely you have documentation as such to share

    Yes this is a tragedy, but it is ONE story that we do not have complete details on. I could just as well show you a child in a coffin after measles vaccine, or in a helmet because of the new seizure disorder, or with poop smeared all over themselves because the autism and bowel disorder.

    Show me then.

    Do you know anything about immunity? Do you know that measles vaccine, while it does suppress measles in populations, the vaccinated are MORE likely than the naturally immune to be secondarily infected and spread the disease, just like pertussis? Read Damien's papers and stop your fear mongering with one-case stories.

    I see you don't know anything about immunity because measles vaccine virus doesn't transmit. Typical uneducated anti-vaxxer. And I have no idea who Damien is.

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  12. the vaccinated are MORE likely than the naturally immune to be secondarily infected and spread the disease, just like pertussis?

    That is a big fat anti-vaccine lie. MCV does not transmit virus, the vaccinees are not immuno-suppressed (unlike patients who have measles and get pneumonia and other opportunistic infections in the double digit percent range).

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    1. This is a big fat pro-vaccine lie. The MMR causes immunosuppression post-injection. Not to the extent that the disease itself does, but do not kid yourself or your dear readers, there is immune suppression after administration of MMR.

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    2. And certainly you have a source for that, anon, because my many sources say: no immunosuppression from MMR, for example here:
      http://www.ncbi.nlm.nih.gov/pubmed/19146903
      http://www.ncbi.nlm.nih.gov/pubmed/12598383
      http://www.ncbi.nlm.nih.gov/pubmed/12477820

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    3. Anonymous: read this before making another blunder like the one you just made:

      http://www.cdc.gov/vaccines/vac-gen/6mishome.htm

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  13. as for Damien:

    Among 44 fully protected, late convalescent adults re-exposed to measles, four developed an asymptomatic secondary immune response (SIR) with a significant increase in measles virus (MV)-specific IgG and low IgM. The boosted antibodies were mainly of the IgG1 subclass and reacted with the nucleoprotein and the haemagglutinin protein. About 30 weeks after re-exposure, antibody levels had decreased by 35-50%, suggesting that the booster effect may only be transient. SIR was only found in individuals with a pre-exposure IgG level below a well defined threshold. Antibody levels above this threshold fully protected against SIR. SIR seems to be an 'all or none response' where the magnitude of increase in specific IgG is independent of pre-exposure antibody levels as long as these are below the above threshold. In combination with pre-exposure neutralizing and haemagglutination inhibiting titres, a threshold was defined below which SIR is likely to occur. This may be useful to predict susceptibility to SIR in a given population, since individuals undergoing clinically inapparent SIR are among seropositive subjects, the most likely candidates to support transmission of virus.
    http://www.ncbi.nlm.nih.gov/pubmed/9328115

    and

    Serological evidence indicates that measles virus (MV) could circulate in seropositive, fully protected populations. Among individuals fully protected against disease, those prone to asymptomatic secondary immune response are the most likely to support subclinical MV transmission. The serological characteristics of protected subjects who developed secondary immune response after reexposure to measles have been described recently [Huiss et al. (1997): Clinical and Experimental Immunology 109:416-420]. On the basis of these data, a threshold of susceptibility was defined to estimate frequencies of secondary immune response competence in different populations. Among measles, late convalescent adults (n = 277) and vaccinated high school children (n = 368), 3.2-3.9% and 22.2-33.2%, respectively, were considered susceptible to secondary immune response. A second vaccination did not seem to lower this incidence. Even when estimates of symptomatic secondary immune response (e.g., secondary vaccine failure) were taken into account, susceptibility to subclinical secondary immune response was still 5-8 times higher after vaccination than after natural infection. Although viral transmission between protected individuals has never been directly demonstrated, the data describe a population in which protected but infectious persons could potentially be of epidemiological importance.
    http://www.ncbi.nlm.nih.gov/pubmed/9700638

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  14. PK, The two studies you cited do not provide any evidence that secondary transmission of measles vaccine strain occurred, even among household contacts. They merely hypothesised that it could happen due to subclinical measles infection and secondary immune response. Given the large outbreaks of measles that continue to occur and molecular epidemiological data collected, if measles vaccine virus was being transmitted, it would have been detected by now. But the fact is it hasn't been.

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  15. Thank you for your reply. I think you misunderstood the point "The two studies you cited do not provide any evidence that secondary transmission of measles vaccine strain occurred, even among household contacts".

    Darmien et al suggest that wild measles virus can be transmitted by those vaccinated with seroconvertion (under certain conditions).

    "Serological evidence indicates that measles virus (MV) could circulate in seropositive, fully protected populations. Among individuals fully protected against disease, those prone to asymptomatic secondary immune response are the most likely to support subclinical MV transmission."

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  16. Sorry PK, I thought you were a previous poster that implied that vaccinated were supporting measles outbreaks and referred to Damien's studies. There are reports of individuals vaccinated (mostly with just one dose) that do acquire measles and become part of the chain of transmission. Thank you for clarifying.

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  17. In 2019:
    a 6-year-old picture of health but at serious risk of SSPE. SSPE is caused by damage to the brain. This will be the reason a 6-year-old at serious risk of SSPE will without warning suddenly fall off. SSPE is similar to epilepsy [correct me if wrong]

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  18. There are bad consequences of not vaccinating. Now the poor little girl is mental retardation/developmentally retarded. My heart breaks for this child...

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  19. This comment reeks of Thingy...

    "Catherina,

    I hope you know by now that measles vaccines can cause SSPE."

    Before your comment gets put into the troll bin Thingy...show us with a citation, where the strain of measles contained in vaccines, was ever found in the autopsied brain tissue of people who died from SSPE.

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    1. And in a citation less than twenty years old. As in these two examples:

      J Infect Dis. 2005 Nov 15;192(10):1686-93.
      Subacute sclerosing panencephalitis: more cases of this fatal disease are prevented by measles immunization than was previously recognized.

      Int J Epidemiol. 2007 Dec;36(6):1334-48.
      Review of the effect of measles vaccination on the epidemiology of SSPE.

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    2. You are cherry picking the 2005 and 2007 papers, which both describe the earlier papers. The latter one explains clearly the problem with the earlier papers, and the issues with Andrew Wakefield's interpretation.

      Apparently you cannot absorb anything that criticizes St. Andy. So it seems your reading comprehension problems stem from your infatuation with St. Andy.

      Go away Thingy. Or at least learn how to read.

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    3. sadly my daughter Laine died from SSPE....she caught measles at 10 1/2mths old....would have been immunised at 12 mths....gifted 'normal' child until 7 1/2 years old.....blind, unable to talk or walk,....died at 12 years of age.....sad, cruel disease!!!

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    4. Cecily - I am so sorry to hear about your daughter's fate, which is so typical for SSPE (the early infection, the 7 year delay, the ~4 year decline). Hopefully, spreading Laine's/your story and that of Angelina and Micha and Natalie will change some parents' minds and save them (and their neighbours) the heartache of losing a child in this cruel way!

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    5. My brother has SSPE and I think he's somewhat a walking miracle. He got measles when he was 2....in 1960. the virus stopped at the midline in his brain for some unknown reason. He had a hemispherectomy in 1989 when he had become toxic on phenobarbital and the quality of life was worth the risk for my mom.
      I was born in 1969 right as my brother's paralysis was setting in (again his body gave a very slow reaction to the SSPE) My mom chose to not vaccinate me for measles because she had met people who did get SSPE from the vaccine (again the vaccine in the 60's, not today) I did get the MMR shot when I was in college and all of my children are vaccinated. SSPE is a horrible disease--we are very lucky that the Dr. was able to cure my brother (with surgery) but he is a rare case.

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    6. Sharon - I am so sorry to hear about your brother's illness. It is indeed a miracle, since nearly all SSPE patients die, even if it sometimes takes many years (Max was very ill for 10).
      I am glad you and your kids are vaccinated now. We know for a fact that MMR does not cause SSPE. In the time where measles still circulated, some babies had measles subclinically/undiagnosed and then got vaccinated and when they developed SSPE, even doctors thought that was due to the vaccine. However, at autopsy, the virus found in the brains of such patient has always been wild virus, never the vaccine virus.
      All the best to your brother :)

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    7. actually the vaccination DOES cause SSPE
      http://www.whale.to/vaccines/sspe1.html
      http://www.whale.to/m/christien.html
      more cases
      http://www.whale.to/v/mmr101.html

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    8. And again you are wrong, has we have pointed out several times before to some anonymous person:

      Int J Epidemiol. 2007 Dec;36(6):1334-48.
      Review of the effect of measles vaccination on the epidemiology of SSPE.

      J Infect Dis. 2005 Nov 15;192(10):1686-93.
      Subacute sclerosing panencephalitis: more cases of this fatal disease are prevented by measles immunization than was previously recognized.

      By the way, posting to John Scudamore's whale.to site invokes Scopie's Law: In any discussion involving science or medicine, citing Whale.to as a credible source loses you the argument immediately... and gets you laughed out of the room.

      In general it is not a good idea to use a farmer who thinks "cloud buster", or balls on copper pipes, will protect one from satanic ley lines.

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    9. You quoted Whale.to - you automatically fail.....

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    10. http://realfoodeater.com/measles-from-mmr/

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    11. The plural of anecdote is not data.

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    12. Anonymous: realfoodeater blog? You must be kidding.

      Try this science blogger and his analysis of realfoodeater.

      http://www.sciencebasedmedicine.org/more-measles-myths/

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    13. I am not wrong, here is an 'official' case on a goverment site, SSPE can be caused by vaccination too!
      http://www.ncbi.nlm.nih.gov/m/pubmed/9567594/
      http://www.ncbi.nlm.nih.gov/m/pubmed/21555060/

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    14. I clicked through to those NCBI papers.
      The first one said "who developed SSPE presumably as a result of a delayed effect of measles, mumps, and rubella (MMR) vaccine."
      Operative word "presumably", and it dates from 1997.
      The second one, from Israel, involves "a 16-year-old boy who manifested the disease despite proper vaccinations." Once again, that doesn't mean the vaccines caused the SSPE. In fact, he was 16. Also "Immunoglobulin G antibodies against measles were strongly positive, with a high relative cerebrospinal fluid/serum ratio." He could have caught the measles despite being properly vaccinated. It happens sometimes.
      You have nothing, Anonymous. All you have are two cases where the vaccine might, and I stress might, have caused the SSPE. But given that the one case dates back to 1997 and wasn't replicated, and the other has a plausible alternate explanation, you don't have a leg to stand on.

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    15. Anonymous is clueless about SSPE, because confirmation of SSPE is only obtained by a brain biopsy or a postmortem testing of brain tissue, which was not done in either case.

      http://www.cdc.gov/measles/about/complications.html

      "....All of the genetic analyses of viral material derived from brain tissue of SSPE patients have revealed sequences of wild-type measles virus, never vaccine virus. There is no evidence that measles vaccine can cause SSPE. Cases of SSPE in patients who have a history of measles vaccination but no knowledge of having had measles either had an undiagnosed rash illness or possibly a mild measles infection early in life due to the presence of maternal antibody. Therefore, physicians should consider SSPE in the differential diagnosis of encephalitis even when the patient does not have a history of measles...."

      When you come up documentation of a brain biopsy or postmortem testing of brain tissue from a SSPE patient, that has been diagnosed as being caused by the strain of measles contained in measles vaccine, and that has been published in a first tier, peer reviewed medical journal, come back here to provide us with the citation and the link to that citation.

      Bye-bye anonymous.

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  20. Thingy's in the spam, where she belongs.

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  21. Thank you Catherina.

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  22. Ou furst son, stil 7 weeks before he was due to be paid, died 5 days after BCG; now they do not let children who are premature, immunosuppressant, or colic and digestive disorders, and encephilitis was nt listed as a side effect. We were ignore, and put dow as anxious patients, until at 6 weeks gestitation (when they apologised) his brother showed thesame traits - they let him be carried until jus over 2 weeks before his EDD - and they no longer ignored us. Himself and his siblings were given more precautionary care and the rules changed to prohibit stupid deaths which had they tken our concerns about his fever seriously would have prevented their big brothers death..

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  23. This comment has been removed by a blog administrator.

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    1. not the place for anti-vaccine insanity

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