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  • 7/30/2019 Cart a Banff

    1/5

    Braslia, May 23rd

    , 2013.

    Dear doctors,

    My name is Nathlia Kneipp, I lost

    my mother to CJD last March inBraslia, Brazils capital. As Banffs

    meeting approaches I decided to

    send you this message with a list

    of Brazilians one-in-a-million,

    the most recent CJD cases that

    made it to the news or appeared

    in personal testimonies, shared

    on-line, and will never be counted

    in any official statistics or be

    mentioned in scientific papers,even though notification is

    mandatory since 2006. These are

    what I call the people of the

    messages in a bottle. Instead of

    throwing them in the ocean, they

    are being tossed in the Internet.

    Everytime a CJD case is discovered

    in this country and this classified

    information leaks to the public

    sphere, it is said, up-front, that it

    has nothing to do with mad cow

    disease. The so called daisy

    plaques are considered the only

    and main concern pertaining to

    prion diseases in humans as far as

    the authorities remarks are

    concerned.

    For our disgrace, there is a source

    of misunderstanding for the

    vocabulary used in the scientific

    prose: contagious-infectious-

    transmissible, distinguishable in

    technical medical use only, are

    considered synonyms in our daily

    talks. Brazilian government

    officials adore that the MRC Prion

    Unit from London states that

    prion disease is not contagious.

    1. A forestry engineer that worked for Emater, 45, in Santarm (PA),

    diagnosed with CJD in November 2011, treated at Hospital Porto Dias,

    Adventist Hospital in Bethlehem, Guadalupe Hospital in Bethlehem,

    and the Portuguese Beneficent, in So Paulo.

    http://diaconoluizgonzaga.blogspot.com.br/2011/10/doenca-misteriosa-vitima-engenheiro.html

    2. Adalia Pains sister, 63, diagnosed with CJD in 2011, in Ceres, Gois

    http://weblog.aventar.eu/blogue.weblog.com.pt/arquivo/2011/03/do

    enca_de_creut.html

    3. The Amazon man diagnosed with CJD at University Hospital Getlio

    Vargas (HUGV), in Manaus (AM) in 2012. Supposedly two simultaneous

    cases in the Amazon. The statement of a local politician in the

    assembly: "let's shut up about that story."

    http://g1.globo.com/am/amazonas/noticia/2012/03/homem-e-

    diagnosticado-com-suspeita-de-mal-da-vaca-louca-no-am.html

    http://al-am.jusbrasil.com.br/noticias/3068328/tony-medeiros-faz-

    esclarecimentos-sobre-mal-da-vaca-louca

    4. A woman that worked as a cook in Recife (PE), 54, admitted to the

    Hospital Tercentenary in Olinda, diagnosed with CJD in 2012

    http://www.diariodepernambuco.com.br/vidaurbana/nota.asp?materi

    a=20120423182923

    http://www1.folhape.com.br/cms/opencms/folhape/pt/cotidiano/noti

    cias/arquivos/2011/outubro/1010.html

    5. The engineer in Belo Horizonte (MG), 63, admitted to the Mother

    Teresa Hospital, diagnosed with CJD in 2012

    http://www.em.com.br/app/noticia/gerais/2012/04/05/interna_gerais

    ,287392/engenheiro-com-sintomas-de-doenca-da-vaca-louca-esta-

    internado-em-bh.shtml

    6. The agricultural worker aged 27, of St John's Paradise (MG),

    admitted to the Hospital Aroldo Tourinho in Montes Claros (MG),diagnosed with CJD in 2012. Received a corneal transplant, which is

    contemplated as a source of contagion.

    http://odia.ig.com.br/portal/brasil/minas-acompanha-pacientes-com-

    sintomas-de-doen%C3%A7a-do-mal-da-vaca-louca-1.429737

    7. A 42 y. o. mand and a 31 y.o. woman, both unrelated to each other

    and admited to the same hospital (interval of one month between

    admissions) at the University Hospital Onofre Lopes, both diagnosed

    with CJD in 2011. Before them, other six individuals were diagnosed

    with the disease since 2006 and admited to that very same hospital,

    what can be considered a cluster, such as Meixoeiros in Galicia

    (Spain).

    http://diaconoluizgonzaga.blogspot.com.br/2011/10/doenca-misteriosa-vitima-engenheiro.htmlhttp://diaconoluizgonzaga.blogspot.com.br/2011/10/doenca-misteriosa-vitima-engenheiro.htmlhttp://diaconoluizgonzaga.blogspot.com.br/2011/10/doenca-misteriosa-vitima-engenheiro.htmlhttp://weblog.aventar.eu/blogue.weblog.com.pt/arquivo/2011/03/doenca_de_creut.htmlhttp://weblog.aventar.eu/blogue.weblog.com.pt/arquivo/2011/03/doenca_de_creut.htmlhttp://weblog.aventar.eu/blogue.weblog.com.pt/arquivo/2011/03/doenca_de_creut.htmlhttp://g1.globo.com/am/amazonas/noticia/2012/03/homem-e-diagnosticado-com-suspeita-de-mal-da-vaca-louca-no-am.htmlhttp://g1.globo.com/am/amazonas/noticia/2012/03/homem-e-diagnosticado-com-suspeita-de-mal-da-vaca-louca-no-am.htmlhttp://g1.globo.com/am/amazonas/noticia/2012/03/homem-e-diagnosticado-com-suspeita-de-mal-da-vaca-louca-no-am.htmlhttp://al-am.jusbrasil.com.br/noticias/3068328/tony-medeiros-faz-esclarecimentos-sobre-mal-da-vaca-loucahttp://al-am.jusbrasil.com.br/noticias/3068328/tony-medeiros-faz-esclarecimentos-sobre-mal-da-vaca-loucahttp://al-am.jusbrasil.com.br/noticias/3068328/tony-medeiros-faz-esclarecimentos-sobre-mal-da-vaca-loucahttp://www.diariodepernambuco.com.br/vidaurbana/nota.asp?materia=20120423182923http://www.diariodepernambuco.com.br/vidaurbana/nota.asp?materia=20120423182923http://www.diariodepernambuco.com.br/vidaurbana/nota.asp?materia=20120423182923http://www1.folhape.com.br/cms/opencms/folhape/pt/cotidiano/noticias/arquivos/2011/outubro/1010.htmlhttp://www1.folhape.com.br/cms/opencms/folhape/pt/cotidiano/noticias/arquivos/2011/outubro/1010.htmlhttp://www1.folhape.com.br/cms/opencms/folhape/pt/cotidiano/noticias/arquivos/2011/outubro/1010.htmlhttp://www.em.com.br/app/noticia/gerais/2012/04/05/interna_gerais,287392/engenheiro-com-sintomas-de-doenca-da-vaca-louca-esta-internado-em-bh.shtmlhttp://www.em.com.br/app/noticia/gerais/2012/04/05/interna_gerais,287392/engenheiro-com-sintomas-de-doenca-da-vaca-louca-esta-internado-em-bh.shtmlhttp://www.em.com.br/app/noticia/gerais/2012/04/05/interna_gerais,287392/engenheiro-com-sintomas-de-doenca-da-vaca-louca-esta-internado-em-bh.shtmlhttp://www.em.com.br/app/noticia/gerais/2012/04/05/interna_gerais,287392/engenheiro-com-sintomas-de-doenca-da-vaca-louca-esta-internado-em-bh.shtmlhttp://odia.ig.com.br/portal/brasil/minas-acompanha-pacientes-com-sintomas-de-doen%C3%A7a-do-mal-da-vaca-louca-1.429737http://odia.ig.com.br/portal/brasil/minas-acompanha-pacientes-com-sintomas-de-doen%C3%A7a-do-mal-da-vaca-louca-1.429737http://odia.ig.com.br/portal/brasil/minas-acompanha-pacientes-com-sintomas-de-doen%C3%A7a-do-mal-da-vaca-louca-1.429737http://odia.ig.com.br/portal/brasil/minas-acompanha-pacientes-com-sintomas-de-doen%C3%A7a-do-mal-da-vaca-louca-1.429737http://odia.ig.com.br/portal/brasil/minas-acompanha-pacientes-com-sintomas-de-doen%C3%A7a-do-mal-da-vaca-louca-1.429737http://www.em.com.br/app/noticia/gerais/2012/04/05/interna_gerais,287392/engenheiro-com-sintomas-de-doenca-da-vaca-louca-esta-internado-em-bh.shtmlhttp://www.em.com.br/app/noticia/gerais/2012/04/05/interna_gerais,287392/engenheiro-com-sintomas-de-doenca-da-vaca-louca-esta-internado-em-bh.shtmlhttp://www.em.com.br/app/noticia/gerais/2012/04/05/interna_gerais,287392/engenheiro-com-sintomas-de-doenca-da-vaca-louca-esta-internado-em-bh.shtmlhttp://www1.folhape.com.br/cms/opencms/folhape/pt/cotidiano/noticias/arquivos/2011/outubro/1010.htmlhttp://www1.folhape.com.br/cms/opencms/folhape/pt/cotidiano/noticias/arquivos/2011/outubro/1010.htmlhttp://www.diariodepernambuco.com.br/vidaurbana/nota.asp?materia=20120423182923http://www.diariodepernambuco.com.br/vidaurbana/nota.asp?materia=20120423182923http://al-am.jusbrasil.com.br/noticias/3068328/tony-medeiros-faz-esclarecimentos-sobre-mal-da-vaca-loucahttp://al-am.jusbrasil.com.br/noticias/3068328/tony-medeiros-faz-esclarecimentos-sobre-mal-da-vaca-loucahttp://g1.globo.com/am/amazonas/noticia/2012/03/homem-e-diagnosticado-com-suspeita-de-mal-da-vaca-louca-no-am.htmlhttp://g1.globo.com/am/amazonas/noticia/2012/03/homem-e-diagnosticado-com-suspeita-de-mal-da-vaca-louca-no-am.htmlhttp://weblog.aventar.eu/blogue.weblog.com.pt/arquivo/2011/03/doenca_de_creut.htmlhttp://weblog.aventar.eu/blogue.weblog.com.pt/arquivo/2011/03/doenca_de_creut.htmlhttp://diaconoluizgonzaga.blogspot.com.br/2011/10/doenca-misteriosa-vitima-engenheiro.htmlhttp://diaconoluizgonzaga.blogspot.com.br/2011/10/doenca-misteriosa-vitima-engenheiro.html
  • 7/30/2019 Cart a Banff

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    As if they were parrots of the British

    most renowned intelligentsia they

    publish official notes, rephrasing the

    statement in a chamaleonic fashion:

    the classical form of CJD is non-

    transmissible and represents no

    threat to human health.

    My mothers death certificate states

    that she died as a result of

    spongiform encephalopathy. The t

    of TSE is deliberately omitted. When

    the time came to ask for her

    autopsy, it was denied with a strong

    resurection of the T word combined

    with the other two: it is highly

    contagious for the pathologist and

    assistants, there is no adequate

    facility and equipment available to

    handle such transmissible, infectious

    tissues, we wont do it, nobody will.

    In the worst day of our lives, my

    sister and I had to go to the police,

    and wait for hours in the same

    ecosystem that receives handcuffed

    criminals, in order to get a judicial

    order requesting the autopsy. We

    got it but it was useless: chamaleonic

    contagious-infectious-

    transmissible discourse won.

    Number 12s family also had to face

    this very same quest. The family

    went to the police, but, in that case,

    as they were in Sao Paulo, theysucceeded.

    We often use a dual way of thinking

    to understand a words meaning. We

    distinguish a good person as the

    opposite of a bad one. In the

    wording of CJD world, sporadic is a

    synonym of rare, uncommon (one-in-

    a-million), as if there were an

    opposite type, a much morecommon CJD (one in a thousand, for

    http://tribunadonorte.com.br/news.php?not_id=193394

    http://www.jeancarlos.com.br/index.php?option=com_content&view=articl

    e&id=4446:mal-da-vaca-louca-e-descartado-em-pacientes-de-

    natal&catid=1:blog&Itemid=1

    8. Claudia Correia, 51, Rio de Janeiro, diagnosed with CJD in 2012. Assisted

    by her family, at home. Biopsy confirmed CJD.

    http://terratv.terra.com.br/videos/Noticias/Brasil/4194-424616/Mulher-e-

    contaminada-com-mal-da-vaca-louca-no-Rio-de-Janeiro.htm

    9. Maria do Carmo L. Sena, retired, 74, died in 2013, diagnosed with CJD in

    2012 in Braslia, DF. Even with police interfering it was not allowed to have

    an autopsy, allegedly because the authorities lacked infrastructure and

    there was the risk of contagion for the professionals involved.

    http://www.fabiocampana.com.br/2012/12/ministerio-deve-confirmar-

    exame-positivo-para-vaca-louca-no-parana/

    10. The farmer in Cajazeiras (PB), 66, admitted to the University Hospital of

    Joo Pessoa, diagnosed with CJD in 2012. According to the report, fed on

    "cow skin", which is prohibited.

    http://www.paraiba.com.br/2012/12/19/84599-diretor-do-hu-de-jp-

    confirma-suspeita-de-mal-da-vaca-louca-demencia-progressiva

    http://saudeparaiba.blogspot.com.br/2012/12/mal-da-vaca-louca-na-

    paraiba.html

    11. Es uncle. (Prefers to remain anonymous), in Curitiba (PR), diagnosedwith CJD in 2013.

    12. Maria Cristina Lessas uncle, who died in Taubat (SP), diagnosed

    with CJD in 2012, died in two months. Upon police request, an autopsy was

    performed.

    http://noticias.terra.com.br/mundo/brazil-no-

    radar/blog/2012/12/10/brasil-escondeu-casos-de-vaca-louca-diz-revista-

    americana/

    http://youtu.be/piGkw8ThRFM

    13. Ribamar C. Almeidas brother,, diagnosed with CJD in Maranho in 2012,

    died in March 2013.

    http://noticias.terra.com.br/mundo/brazil-no-

    radar/blog/2012/12/10/brasil-escondeu-casos-de-vaca-louca-diz-revista-

    americana/

    14. Adelia Amorim, 69, diagnosed with CJD in 2013 in Rio de Janeiro.

    http://oglobo.globo.com/rio/ancelmo/posts/2013/02/21/suspeita-de-mal-

    da-vaca-louca-assusta-cidade-do-rio-487100.asp

    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para-vaca-louca-no-parana/http://terratv.terra.com.br/videos/Noticias/Brasil/4194-424616/Mulher-e-contaminada-com-mal-da-vaca-louca-no-Rio-de-Janeiro.htmhttp://terratv.terra.com.br/videos/Noticias/Brasil/4194-424616/Mulher-e-contaminada-com-mal-da-vaca-louca-no-Rio-de-Janeiro.htmhttp://www.jeancarlos.com.br/index.php?option=com_content&view=article&id=4446:mal-da-vaca-louca-e-descartado-em-pacientes-de-natal&catid=1:blog&Itemid=1http://www.jeancarlos.com.br/index.php?option=com_content&view=article&id=4446:mal-da-vaca-louca-e-descartado-em-pacientes-de-natal&catid=1:blog&Itemid=1http://www.jeancarlos.com.br/index.php?option=com_content&view=article&id=4446:mal-da-vaca-louca-e-descartado-em-pacientes-de-natal&catid=1:blog&Itemid=1http://tribunadonorte.com.br/news.php?not_id=193394
  • 7/30/2019 Cart a Banff

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    example). Fortunately, this is not true. Moreover, sporadic is mistaken as a synonym of

    spontaneous (that needs no external force to happen). Many doctors describe sporadic CJD as

    a result of a spontaneous mutation, sometimes said to be a spontaneous genetic mutation

    (different from fCJD). There is no evidence for spontaneous PrPSc formation in any animal or

    human TSE(says Aguzzi and Calella, 2009). The sporadic word is often used as a cover-up

    for lets not cogitate cases of iCJD and vCJD. Case closed. All 14 individuals listed in this

    message are considered sCJD and no questions asked. Number 8 got a vCJD diagnosis as a

    result of a brain biopsy. A few weeks later it was rapidly replaced by a sCJD corrected report.

    Sporadic is a shallow fallacy invented to avoid the phrases: I dont know,I dont want to

    know or I cant know or Im not allowed to research that. Also, we do not say: I got a

    sporadic flu or will die of sporadic cancer. This adjective yada is being exported to Alzheimer,

    they are talking about sporadic Alzheimer these days.

    If human beings killed by CJD had the same status that cattle conquered, they would have a

    mandatory detailed notification of their conditions and the right for an autopsy. A professional

    system, sponsored by the World Health Organisation (WHO), conceived to make it work. The

    humans brain tissues would have the same privilege of being sent to Weybridge in the United

    Kingdom, as it was done to the Brazilian cow with BSE in the South (two years to clarify this

    story there was a fire in one of the 4 labs that received her brain tissue etc.). There would

    be an international database, an open archive to all interested parts, of all images obtained by

    immunohistochemistry/western blot analysis as well as a detailed description (anamnesis) of

    every single CJD case in the world. Cattle got a visualization tool of their TSEs clusters (image

    below). Imagine the day we start plotting every CJD case using Google Maps. How powerful

    this visualization tool can be, if we succeed to free CJD notification from the hands and

    schemes of politicians/politics (shut up, be a patriot, think about your countrys economy)even scientific and med politics, and bureacratic mise-en-scnes.

    Figure 1 BSE cases in Western Canada

    http://www.calgaryherald.com/news/case+case+history+Canada/8406561/story.html#ixzz2TpfAMzzZ

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    What science has been providing for CJD victims other than unanswered questions? Nothing.

    Millions spent year after year with no result so far. A person that visits a doctor and receives

    an irrevocable death sentence followed by a description of the horrors that are supposed to

    happen would have the same check-mate context announced in a modern hospital of the

    twenty-first century or as a patient in the home-office of Hippocrates, 370 BC, in ancient

    Greece. The same thing: There is nothing to be done. Go home and deal with it. What

    about the countries that face famine in a daily basis. This Indian man with CJD

    http://www.youtube.com/watch?v=daU1Lx7g6hA, for instance, what science is doing for his

    well being? His doctor says he uploaded the video for educational purposes. Some piece of

    science will have the nerve to promote this:

    It is one of the most outrageous paragraphs I had to read about CJD as I compare what is said

    there with what I have witnessed as a family member of a CJD patient. I cant put in words the

    amount of torture and pain my mother had to endure from 2008 to 2013, no matter what

    parameters science use to measure or determine what defines emotional and physical pain.

    This is not an anti-science manifesto. In order to have an opinion about this matter

    (https://bitly.com/SWfcKb) I read many scientific articles. Those researchers that are thinking

    out of the box: Claudio Soto (is Alzheimer transmissible/prionic disease?); Aguzzi and

    Collinge (some cases of sCJD could be a result of a different type of BSE); Johannes Haybaeck

    [prions colonize the brain of hosts after oral, parenteral, intralingual, or even transdermaluptake. However, prions are not generally considered to be airborne(...). We conclude that

    aerogenic exposure to prions is very efficacious and can lead to direct invasion of neural

    pathways] and many others deserve appreciation and funding for their research projects.

    As a layperson I find that researchers repeat ad nauseum the very same thing, what they

    consider the common aspects of CJD. I understand that it is part of their craft (literature

    revision), but I also think that the common aspects of CJD or the 10K mice may not be the only

    source of new meaningful questions and answers. There should be a group of researchers

    screening significant differences among CJD cases as part of an intriguing thread of how this

    disease can be presented in different manners, varying (a lot) from what is described in the

    scientific literature. Number 1 in the list of Brazilian most recent one-in-a-million is a man thatworked with ranchers up North. His case has a common aspect with a 42 y. o. woman that was

    http://www.youtube.com/watch?v=daU1Lx7g6hAhttp://www.youtube.com/watch?v=daU1Lx7g6hAhttps://bitly.com/SWfcKbhttps://bitly.com/SWfcKbhttps://bitly.com/SWfcKbhttps://bitly.com/SWfcKbhttp://www.youtube.com/watch?v=daU1Lx7g6hA
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