# Post-Polio Syndrome ( Symposiums in Canada & San Diego)



## Susan Purry (Nov 6, 2001)

This was posted to the Co-Cure email list. It's about a conference on M.E/CFS, Fibro and how they might be linked to the Polio virus.


> quote:From: Lydia Neilson <ag922###freenet.carleton.ca>Chronic Fatigue Syndrome-------------------------------------is not about being tired all the time !Myalgic Encephalomyelitis (ME), Chronic Fatigue Syndrome(CFS) and Fibromyalgia (FM)are Neurological Disordersinvolving the immune system, the neuroendocrine system, themuscles and the brain !How can so many systems of the body be involved?Decades of research linking polio and ME/CFS and newresearch comparing the late effects of polio with ME/CFS andFM provide the answer to this question. *Learn what wasdiscovered in the 2001 International PPS/ME/CFS/FM Surveyconducted on Canadians, Americans and Britons!*To find out more attend the*National ME/FM Action Network's1st Annual SymposiumonParallels BetweenPost-Polio Sequelae, Myalgic Encephalomyelitis/ChronicFatigue Syndrome and FibromyalgiaJune 15, 20021:00 - 4:00 P.M.at theHoliday Inn Hotel & Suites Toronto-Markham, Ontario*(approximately 20 mins. drive from Toronto's Lester B.Pearson International Airport)Conference SpeakersDr. Elizabeth Dowsett is an internationally renowned expert onME/CFS and is the founder of the CFS Diagnostic andManagement Service, Essex, England. She has treatedpeople with ME/CFS for forty years.Dr. Richard L. Bruno is the world's leading expert onPost-Polio Sequelae (PPS). He is the director of theInternational Center for Post-Polio Education and Researchand Fatigue Management Programs at New Jersey'sEnglewood Hospital and Medical Center.TICKETS: $8.00 in advance or $10.00 at the door. *To reservea seat, please contact: Mary Ellen, National ME/FM ActionNetwork, P.O. Box 66172, Town Center Postal Outlet, 1355Kingston Rd., Pickering, ON L1V 6P7. E-Mail:marye###pathcom.com. Tel/Fax: (905) 831-4744*Out-of-towners wishing to stay at the Holiday Inn Hotel & SuitesToronto-Markham, Ontario, should ask for a reducedsymposium room rate by phoning the hotel. Please book assoon as possible. Call toll-free at 1-800-387-3303 or (905)474-0444.This symposium is sponsored by the National ME/FM ActionNetwork of Canada. The National ME/FM Action Network is aCanadian, registered, charitable organization dedicated tohelping people who suffer from ME/CFS and/or FM throughadvocacy, support, education, research and the publishing of abi-monthly newsletter QUEST.


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## Guest (Jun 16, 2002)

I am not far from Ontario and wish I could attend, but my schedule won't permit it. I've read about FMS (M.E) and CFS being linked to vaccines... is that what we're talking about here.... vaccines or the actual disease of polio?


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## weener (Aug 15, 2000)

Unfortunately, I didn't read this post until today. I do live in Ontario and my parents live about 20 minutes from this hotel. Guess where I was yesterday, yep visiting the folks for an early Father's Day celebration. Oh well, I'll have to catch another seminar. Thanks anyways, Susan for the post.


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## Feisty (Aug 14, 2000)

Susan,I'm interested in the same question ArtSpirit asked. Are they saying it's from contracting polio itself, or from getting the vaccine? I know the vaccine was "live" polio virus that was given to us in the form of a sugar cube back when I was a little girl (I'm going to be 53 in a couple of weeks)---I remember standing in line at the County Garage, waiting for my turn to get the little white paper cup with the sugar cube in it!! 3 times I think I had to go over so many weeks.This is interesting, to say the least. But the question remains---now what do we do?Karen


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## Susan Purry (Nov 6, 2001)

I just realised I posted this after the symposium had taken place.







How stupid of me - I'm sorry. Entirely unhelpful of me. BTW, M.E. (myalgic encephalomyopathy or encephalomyelitis) is another name for CFS. My own thoughts/experience of vaccinations and M.E/CFS is this... the first hospital consultant I saw for M.E./CFS (Dr Weir, Dept. of Tropical & Infectious Diseases at the Royal Free Hospital in London) told me not to have vaccinations wherever possible because it's just not known what effects they have on M.E/CFS. I was also advised that until I had had 2 years of FULL remission of M.E/CFS symptoms, not to contemplate foreign travel to Southern countries because of the vaccinations that were required. My first two episodes of M.E/CFS followed a little while after the MMR vaccination and the Polio & Tetanus vaccinations respectively. Whether the vaccinations had anything to do with the development of M.E/CFS I don't know. In 1996 I had the Meningitis vaccination and prophylaxis (whilst I was in M.E/CFS remission), with no effects on the M.E/CFS. This third relapse of M.E/CFS which started in 2000 does not seem to be related to any vaccinations. Here's some info on the possible relationship between M.E/CFS and polio, post-polio syndrome or the live polio vaccine:General on vaccines and CFS: http://www.cfids.org/archives/2001rr/2001-rr1-article03.asp http://www.cfsresearch.org/cfs/research/treatment/5nf.htm


> quote:Theories--------There are probably 50 good theories on the cause of ME, each of which isvery interesting. And there are also lots of bad ones.Different theories: Post-polio syndrome is indistinguishable from ME/CFS. The pattern ofsymptoms of the two illnesses are quite similar. 91% of polio survivorshave:+ moderate to severe fatigue (primary cause of disability);+ significant cognitive dysfunction;+ poor concentration and memory etc.+ Polio virus lesions have been found at autopsy.


 http://www.cfsresearch.org/cfs/conferences/4nf.htm


> quoter Michael Carter BSc PhDThe effect of polioviruses (part of the group of enteroviruses) onmitochondrial function...To return to the question of how viral infection can affect the nervousfunction. It can occur in a number of theoretical ways, and ways that arenot so theoretical. Viral infection as we have heard can become latent andcan express proteins that may affect the nervous system. Those sameproteins that can reside in muscle cells can also be taken up by nerveendings and transported to the brain.The virus itself can be taken up by the nervous endings and transported tothe brain. Polio virus is a well known example of this and there are manyothers.


 http://sitelevel.whatuseek.com/query.go?cr...de1&query=polio


> quote:Results from This Site: 1 - 10 of 10 total results for polio CFS & Fibromyalgia Research Notices, Co-Cure Articles and Posts ... =b [ back to index ] Posted to Co-Cure Thu, 13 Jan 2000 20:27:07 -0500 by Gail Kansky Childhood polio infection may cause CFS in baby-boomers Englewood Hospital and Medical Center 350 Engle Street Englewood ... http://www.co-cure.org/infores7.htm - 34k - 2001-07-17 CFS & Fibromyalgia Research Notices, Co-Cure Articles and Posts ... Co-Cure Mon, 7 Aug 2000 10:26:55 +0200 by Jean Linn CFS May Be Result of Childhood Non-paralytic Polio Infection A layperson-accessible introductory article on this subject by Dr. Richard Bruno appears ... http://www.co-cure.org/infor15.htm - 29k - 2001-02-12 Co-Cure Additional Resources - Discussion Lists, Newsgroups, and Other Resources ... , send the message: SUBSCRIBE PAIN-L Your full name To: LISTSERV###MAELSTROM.STJOHNS.EDU * Post-Polio-Med (An open forum for questions and answers to and from post-polio syndrome researchers, physicians ... http://www.co-cure.org/addtalk.htm - 34k - 2002-01-09 The Ongoing Saga of the CDC's Use of CFS Research Funds ... misleading information to Congress. Resources intended for CFS were actually used for measles, polio and other disease areas. This was a breach of CDC's solemn trust and is in direct conflict with its ... http://www.co-cure.org/audits1.htm - 30k - 2000-03-07 CFS & Fibromyalgia Research Notices, Co-Cure Articles and Posts ... function with emphasis on GH secretion in CFS * CFS May Be Result of Childhood Non-paralytic Polio Infection * Enhanced sensitivity of the peripheral cholinergic vascular response in patients with chronic ... http://www.co-cure.org/inforesf.htm - 20k - 2002-03-07 CFS & Fibromyalgia Research Notices, Co-Cure Articles and Posts ... Associated With CFS * Hair calcium and magnesium levels in patients with fibromyalgia * Childhood polio infection may cause CFS in baby-boomers * Fibromyalgia: a risk factor for osteoporosis [ Index page ... http://www.co-cure.org/inforesc.htm - 9k - 2001-02-12 Chronic Fatigue Syndrome FAQ ... been discounted as being hysteria, depression, somatoform disorders, etc. One hundred years ago, polio was dismissed in just that fashion. When CFS gained notice in recent times, many of its symptoms ... http://www.co-cure.org/faq.htm - 85k - 1999-10-15 Co-Cure Additional Resources - Other Websites and Resources ... to some other ME/CFS related sites, and a print-out and send application form. Lincolnshire Post-Polio Network in eastern England Lupus Foundation of America., Inc. Lupus Home Page of Hamline University ... http://www.co-cure.org/addlink1.htm - 27k - 2002-02-27 CFS Reseach - Co-Cure Reading Room ... Mazlen Radio Show on 1-31-99. He discusses a number of issues concerning his work, including a polio-like virus that he is seeing in some of his sudden-onset CFS patients as well as the results of SPECT ... http://www.co-cure.org/cfsres.htm - 36k - 2002-03-07 Chronic Fatigue Syndrome & FMS Medical Notices, Co-Cure Articles and Posts ... Fatigue Management Program, developed by Dr. Bruno nearly a decade ago to treat chronic fatigue in polio survivors, has been used by the British Chronic Fatigue Centre for six years and has been found ... http://www.co-cure.org/infomed1.htm - 30k - 2000-07-04


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## Susan Purry (Nov 6, 2001)

These 2 were posted to the Co-Cure list, it tells of another symposium, what post-polio syndrome is, and mentions M.E/CFS and Fibro.I know I keep posting info from that list here, but it is really useful.


> quote:Hello, this is Judith Silverman. I am on the Organizing Committee for theSan Diego Post Polio Symposium. * This symposium addresses PPS; however,you may recognize some issues that also may effect people with ME/CFS andsome with FMS. Since this symposium is not being sponsored by a CFS/ME orFMS group, please do not expect that these illnesses will be directlyaddressed.*Dr. Bruno was invited to speak, but his schedule could not accommodate itat this time.*If you need more info on how this symposium may relate to ME/CFS or FMS,e-mail me. Please note, I am the only non-polio person on this organizingcommittee.*I know what will be discussed and will be able to relate to your questions.Everyone else on the committee had paralytic polio as a child and now haspost polio.Mary Clare and her husband Steve are the organizers who are 95% responsiblefor this wonderful post polio symposium.If you are going to attend please RSVP Mary Clare Schlessinger at (760)741-5075.You can e-mail her at > :PostPolio###cox.netWe have gotten a huge response so far and have a cut off. The hall onlyaccommodates about 250 people. (There will be tapes available later of thePost Polio Symposium in San Diego.) http://sandiego_polio.tripod.com/symposium.htm


 http://www.nctimes.net/news/2002/20020616/60547.html


> quote:*Escondido polio survivor organizes symposium for patients, doctorsGARY WARTH *...To educate patients and doctors, Schlesinger has organized a free post-polio symposium from 1 to 4 p.m. June 23 at the Schaetzel Center, Scripps Memorial Hospital, 9890 Genesee Ave., La Jolla.


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## Guest (Jun 18, 2002)

Scarey stuff. My son nearly died from a MMR vaccination at the age of 15 months. I also remember the days of the sugar cube polio vaccinations that people took like candy. I suppose any virus, once inside the body, no matter how it got there, can react in numerous ways. Think about Herpes Zoster...more commonly known as the chickenpox virus. Later in life when people get sick or stressed or both.... it manifests as shingles.I'm even old enough to remember having had the smallpox vaccination. My arm swelled up like a balloon and I was an extremely sick little girl for months.... I missed almost the entire year of Kindergarten


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## Susan Purry (Nov 6, 2001)

More from the Co-Cure list which may help us understand:


> quote:Send an Email for free membership~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~ >>>> Help ME Circle <<<< 12 June 2002Editorship : j.van.roijen###chello.nlOutgoing mail scanned by Norton AV~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~From: <snipped>T'N'T---------TIPS AND TECHNIQUES FOR TREATING CFS/MEJune, 2002by Dr. Richard L. Bruno<<Have you heard of a Dr. William Campbell Douglas and hiscontention that polio "may be with us again in a disguisedform" and that the oral polio vaccine is causing PPS andchronic fatigue syndrome? Could this be true>>~~~~~~~~~~~~~~~~~~I have read Dr. Douglas' writings. He also says polio is "morecommon than ever." But I don't think he means that the threepolioviruses are more common than ever, are "with us again ina disguised form" or that the oral polio vaccine is causing PPSand chronic fatigue syndrome. That is not to say that Dr.Douglas isn't on the right track about "polio" being with usagain and that the oral polio vaccine is indirectly "causing"PPS and chronic fatigue syndrome. This is becausesomething unexpected, frightening and totally unrecognizedhappened after the polio vaccine was distributed: The numberof cases of CFS/ME went through the roof. British infectiousdisease specialist Elizabeth Dowsett plotted the cases ofCFS/ME she and CFS/ME pioneer MeIvin Ramsay had seenin their practice since 1919 against reported cases of polio inEngland. When the Salk and then Sabin vaccines brought theyearly number of British polio cases below 25 in the early1960s, the number of CFS/ME patients took off. In Ramsay'sand Dowsett's practice alone, between 1960 and 1980 thenumber of CFS/ME patients increased by fifty times. Between1980 and 1990, the number of patients with CFS/MEincreased yet again by a factor of fifty! Throughout the world32 CFS/ME outbreaks were recorded after the polio vaccinewas distributed. So something other than the poliovirus wascausing CFS/ME.What is that something? It appears that the vaccine thateliminated polio had an unintended consequence. Theelimination of the three types of poliovirus left a vacuum thathad to be filled. Just as a flock of dominant and aggressiveblue jays blocks less aggressive robins from roosting in yourback yard, poliovirus are the blue jays of enteroviruses, theviruses that live and grow in your intestines. When poliovirus"blue jays" disappeared from your intestines thanks to thevaccine, other enteroviruses "robins" took over the poliovirus'old intestinal breeding ground and filled the vacuum. With thepolioviruses gone other enteroviruses were able to multiply,spill into the bloodstream and enter the spinal cord and brain.In 1990 Dr. Dowsett looked for antibodies to non-polioenterovirus in her CFS/ME patients. Fifty percent hadantibodies to the first non-polio enterovirus ever discovered --the Coxsackie B virus -- named after Coxsackie, New York, thetown where it was found to have paralyzed children in 1948.Yes, paralyzed. It is not just the polioviruses that enter and killneurons in the spinal cord and brain stem. Neuron damage,weakness, paralysis and symptoms of brain fatigue caused bynon-polio enteroviruses can be so similar as to beindistinguishable from the actions of polioviruses. OneCoxsackie virus, named A7, produces paralytic symptoms sosimilar to polio that it has been named poliovirus "Type IV."Other enteroviruses that cause damage and symptoms similarto the polioviruses include all the other Coxsackie viruses, theECHO viruses (which in 1956 were the first viruses associatedwith a CFS/ME outbreak) and the recently discoveredEnteroviruses 71. One piece of evidence directly links anenterovirus to CFS/ME and damage to the neurons thatactivate the brain. Sadly, the evidence comes from a CFS/MEpatient who took her own life. Traces of Coxsackie B virus --the same virus for which Dowsett found antibodies in herCFS/ME patients -- was found in both the hypothalamus andbrain stem, the very heart of the brain activating system whichour and others' research has found is damage in poliosurvivors with fatigue and in patients with CFS/ME.So the "disguised form" that polio may be talking is not adisguise at all but replacement by another enterovirus. And theoral polio vaccine is "causing" chronic fatigue syndrome bymaking way for other enterovirus to grow in the intestines andbe able to do damage like that done by the poliovirus, exceptthat the damage is most frequently found in brain activatingsystem neurons and causes fatigue, not in the spinal cordcausing paralysis.~~~~~~~~~~~~~~~~~~~~~~~~~~Dr. Richard Bruno is Director of Fatigue ManagementPrograms and The Post-Polio Institute at Englewood (NJ)Hospital and Medical Center. His new book, THE POLIOPARADOX: UNCOVERING THE HIDDEN HISTORY OFPOLIO TO UNDERSTAND TREAT "POST-POLIOSYNDROME" AND CHRONIC FATIGUE, is published byWarner Books. (AOL Keyword POLIO PARADOX.) E-mailquestions to him at PolioParadox###aol.com~~~~~~~~~~~~~~~~~~~~~~


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## mazzy (Feb 20, 1999)

I am a polio survivor (age 7, 1956) and was diagnosed with post-polio syndrome in 1987. I recently attended the post-polio/chronic fatigue conference in N.C. where Dr Bruno was the featured speaker. If you haven't read his book "The Polio Paradox" you may want to check it out. The similarities between CFS and PPS are striking. I do not post here often, but do come to read the posts as many are helpful to me. My PPS is somewhat stabilized now, although I do have to use a powerchair 24/7. My major complaint to my physiatrist on my last visit was the overwhelming fatigue that still knocks me back too often, even after living with PPS for 15 years. As far as the vaccine goes, Dr Bruno spoke about this at the conference. The live polio vaccine was used for many years, both because it was thought to be more effective, and also because it was more economical to treat so vast a population. Just recently, the U.S. has stopped using the live vaccine because of the many complications attributed to it. It is still widely used in many other parts of the world. My first two children were given the Salk vaccine (injection) because I insisted on it, and was given a choice then....but my last child (who is only 9) was given the Sabin or live vaccine (what many of us remember as the sugar cube, or given orally). I was extremely upset by this at the time, as I know other polio survivors personally who actually contracted polio by the live vaccine. Ironically, while I was being shipped off to a quarantine hospital in 1956, my first grade class was receiving their first polio shots in school. I later had to go through the series of shots myself, and then the oral vaccine, even though I already had polio. Every other polio survivor I know went through the same routine. Our parents were told this was done to prevent us from getting one of the other types of polio viruses, since they could not determine which type we had contracted. My heart goes out to all of you dealing with CFS... believe me, I know so well what you are going through.


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