Braslia, May 23rd, 2013.

Dear doctors, My name is Nathlia Kneipp, I lost my mother to CJD last March in Braslia, 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-infectioustransmissible, 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/doencamisteriosa-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-ediagnosticado-com-suspeita-de-mal-da-vaca-louca-no-am.html http://al-am.jusbrasil.com.br/noticias/3068328/tony-medeiros-fazesclarecimentos-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-estainternado-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-comsintomas-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).

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 nontransmissible 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-infectioustransmissible 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, they succeeded. 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-ina-million), as if there were an opposite type, a much more common 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-denatal&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-econtaminada-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-confirmarexame-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-jpconfirma-suspeita-de-mal-da-vaca-louca-demencia-progressiva http://saudeparaiba.blogspot.com.br/2012/12/mal-da-vaca-louca-naparaiba.html 11. Es uncle. (Prefers to remain anonymous), in Curitiba (PR), diagnosed with 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-noradar/blog/2012/12/10/brasil-escondeu-casos-de-vaca-louca-diz-revistaamericana/ 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-noradar/blog/2012/12/10/brasil-escondeu-casos-de-vaca-louca-diz-revistaamericana/ 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-malda-vaca-louca-assusta-cidade-do-rio-487100.asp

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

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 transdermal uptake. 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 that worked with ranchers up North. His case has a common aspect with a 42 y. o. woman that was

diagnosed with CJD in the same state (Par) in 1998. She had the right for an autopsy and her brains tissue analysis was performed by Aguzzi in 1998. Both individuals manifested as a first symptom (what lead them to seek medical help) a strong backache, spinal cord involvement. If they were both in a CJD database and were part of a cluster in the North region of Brazil this kind of info could lead to identifying a strain that is (remains) active/killing there. There was a 6 month old baby in Campinas, Sao Paulo, with CJD, she stayed in the hospital until she was 5 years old and died. A 46 y. o. man had a slowly 16-year course of very slowly progressing CJD with a 7-week terminal phase of florid Creutzfeldt-Jakob disease. These exceptions are not mentioned in the scientific literature. It is stated as a rule that CJD can not have a slow progression, therefore, CJD is not cogitated when the person is experiencing the symptoms for years. I suggest that you show Christinas video http://www.youtube.com/watch?feature=player_embedded&v=oYDTBHCNx3w an 11 year old Spanish girl that is battling CJD during the meeting in Banff. I would ask for prayers + HIGH QUALITY SCIENCE and decent public policies for CJD worldwide. Thank you for your attention. Nathlia Kneipp Sena nkneippsena@gmail.com