Professor & patients' paper on the solvable biological challenge of ME/CFS: reader-friendly version
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Similarities between Post Polio Syndrome and ME

Discussion in 'General ME/CFS News' started by rlc, Dec 2, 2011.

  1. rlc

    rlc Senior Member

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    meandthecat, medfeb and Snow Leopard like this.
  2. mrpanoff

    mrpanoff

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    Looks like one more argument in favour of HERV involvement.
     
  3. Enid

    Enid Senior Member

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    Very interesting ric - definately one of the things my Neurologist thought long and hard about ten years ago.
     
  4. justinreilly

    justinreilly Senior Member

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    I consider post-polio to be ME.

    can't belief the font is in red. talk about hard on ME eyes! : )
     
  5. snowathlete

    snowathlete

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    have their been any studies on polio, or antibodies to it in ME/CFS people?
     
  6. fawkes

    fawkes Yesterday's gone.

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    Absolutely there are a lot of similarities to post-polio on paper. I went so far (about 15 years ago) as going to a PPS physician (and subsequent work-up for MS as well) who said there was no particular difference between what I had and PPS, that the treatment (or lack of it) would be essentially the same in any event, and that I should 'pep up' and do some volunteer work to get my energy back! I went to a number of meetings of the PPS support group in my city, and of course talked with several of the people. It became clear to me that what I had was NOT what they had. They had mental energy, loved (and therefore tolerated) alcoholic drinks, loved a party, etc., etc. Sure, many rode scooters or motorized wheelchairs and had levels of muscle 'inability', but they did not have the neuroendocrine exhaustion or post-exertional malaise anything like mine (or my alcohol intolerance) or type of cognitive problems I and people in my CFS support group had. While the similarities are stunning (read the book The Summer Plague), the differences, to me, were also stunning, and not particularly something I'd attribute to my never having realized I had had polio, if in fact I did.
     
  7. rlc

    rlc Senior Member

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    Hi Snowathlete, RE

    have their been any studies on polio, or antibodies to it in ME/CFS people?

    To the best of my knowledge there havent been any recent studies into polio antibodies and ME, except of course the only person who actually seems to get the idea that ME existed long before 1988 and takes the old research into ME seriously, especially the information from epidemics, because it get rid of the problems of mixed cohorts that we are plagued with today, this of course is Dr Byron Hyde, he states in this article http://www.wicfs-me.org/Pdf Files/Byron Hyde - Complexities of Diagnosis.pdf

    Another curious feature is that many acute onset ME patients have incredibly high polio 1, 2, or 3
    antibody levels. They obviously do not have polio, but perhaps some of the viruses that cause acute onset
    ME are similar in nature to poliovirus.

    Unfortunately the rest of the ME researchers seem to be asleep at the wheel when it comes to the link between polio and ME (it would help if they read the older research which is full of very interesting leads which have largely been forgotten about today)

    The three Polio viruses are all Enteroviruses a large family of very similar viruses, the thing that separates the polio viruses from the rest is that they cause paralysis in a minority of patients, although there is another Enterovirus that can cause the same symptoms Coxsackie A7 which has been called the fourth polio virus.

    Enteroviruses have been proven to cause encephalitis, muscle infection, serious heart conditions etc and when you look at the older research which isnt beset with the problems of mixed cohorts, you find that what they are reporting fits with what Enteroviruses do.

    So you not only have people in previous ME epidemics being immune to Polio, and showing high antibodies to Polio viruses when they dont have Polio which implies that I virus almost identical to Polio must be present e.g. another Enterovirus.

    You also see that the epidemics have very short incubation periods of under a week, exactly the same incubation period as Enteroviruses including Polio.

    The illness is biphasic starting with a relatively minor infection, which is then followed by the second long lasting ME phase, a pattern that is consistent with Enterovirus infection.

    You also find that ME epidemics and infection rates normally occur in late summer early autumn, which is well known to be the peak time for Enterovirus infections.

    As the article above shows the symptoms and recorded damage found in Post Polio Syndrome and ME are extremely similar, which implies a extremely similar virus e.g. member of the Enterovirus family.

    The reason why Enteroviruses werent found in the early epidemics is quite simply they didnt have a test that could find them, Polio was only discovered because Polio has a mortality rate of about 2% and they found the virus by dissecting dead patients and sticking the samples under microscopes because ME patients dont tend to die so rapidly they never had any bodies to dissect.

    As time went on and viral detection methods improves Enteroviruses were recovered from 4 of the epidemics.

    Since then, a Google scholar search using terms like Enteroviruses, Coxsackie virus and Echo virus, plus ME, PVFS etc reveals that Enteroviruses have been found in ME patients over and over again, by blood test, faeces test, muscle biopsy, stomach biopsy, in the spinal fluid and in the brain at autopsy.
    Such as
    http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(70)91097-4/abstract
    http://pmj.bmj.com/content/66/777/526.full.pdf
    http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(88)92722-5/abstract#
    http://bmb.oxfordjournals.org/content/47/4/872.short

    In the new Byron Hyde ME definition http://www.hfme.org/Other/DefinitionBooklet_Sept_2011.pdf page 24 he explains how during the 1980s when ME was sweeping across Canada, doctors were regularly testing these patients for Epstein Barr virus and the results came back negative, but a Dr McLaughlin sent thousands of these samples for further viral testing, the finding was that only one viral group was responsible for theses thousands of sick patients Enteroviruses, including a new previously unidentified strain. Dr Hyde also ran his own tests on patients and found that they were infected with Enteroviruses.

    Recently we have had Dr Chia finding 80% of acute onset patients have Enteroviral infections that he has found by stomach biopsy.

    So what has been the result of all this research, absolutely nothing, the likes of the CDC and Wessely School have ignored it all, and have instead wasted all available money trying to imply that ME patients are nuts, and have produced and endless stream of crap CFS definitions that dont define ME, and guarantee that vast numbers of other people who have other known fatigue causing illnesses get misdiagnosed as having CFS and are left to suffer.

    My hope is that the Lipkin Pathogen search will be based on selecting the right cohort of ME patients and based on the evidence of the past, what he will find is Enteroviruses, and because he is such a big name in the medical world, the results will actually be taken seriously this time, and more reliable tests and treatments developed. Fingers crossed!

    All the best
     
  8. Snow Leopard

    Snow Leopard Hibernating

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    The problem is we've all been immunised to it...
     
  9. rlc

    rlc Senior Member

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    Hi snowleopard, yes weve all been immunized against polio, but not to any of the other Enteroviruses, in the Iceland outbreak patients who had been exposed to ME, but were latter given the polio vaccine, showed a large increase in Polio antibodies, which is not found in patients who hadnt been exposed to ME in other areas.

    In Hydes works he found that people who had already been immunized to Polio, when they contracted ME suddenly had very high antibody levels for Polio, both these reaction imply the strong possibility that the cause of ME is Enteroviruses, because they are all so similar, it appears that the body is firing out Polio antibodies, but is mistaken because of the similarities, and it is actually a different Enterovirus involved.

    Hopefully we will get some well funded research into Enteroviruses in the near future which will sort all this out. The really sad thing, if it does turn out to be Enteroviruses that cause ME, and all the previous research was right, is that it is just as easy to make a vaccine for any of the other Enteroviruses as it is for Polio, and if the original research was followed up on they could have invented a vaccine years ago and wiped ME out and averted so much suffering.

    All the best
     
    halcyon and Antares in NYC like this.
  10. Enid

    Enid Senior Member

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    Thanks ric - I do feel this is going down the right path now.
     
  11. snowathlete

    snowathlete

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    Yes, this is my hope to, that he finds it - whatever it is.

    Yes, very interesting. I had a bunch of immunizations shortly before getting ill. So its something I am aware of as a potential cause, and this sort of reaction sounds sensible to me as an idea.
     
  12. justinreilly

    justinreilly Senior Member

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    fawkes, interesting info about the post-polio patients you met.

    Ric, really fascinating posts. I have saved them for later reference myself. It would be great if you could make them a blog post. Such great info!

    I haven't read enough about post-polio; it's on my to do list! I skimmed some info on cardioviruses, which are closely related to enteroviruses and have very similar symptoms (lifelong severe neurological symptoms, etc) except they cause more prominent cardiomyopathy, so just based on that it seems like they could also be a candidate, but noone has looked at them in ME (to my knowledge). Any thoughts off the top of your head?
     
  13. barbc56

    barbc56 Senior Member

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    I'd be interested to see the sources. Thanks. :>)
     
  14. mrpanoff

    mrpanoff

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    Me too, especially those Hydes works!
     
  15. rlc

    rlc Senior Member

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    Hi all RE sources of information, for those that dont know, when in articles like the one about the similarities between post polio and ME, you see some information followed by a number in brackets e.g. When patients were re-examined six years after the original outbreak, 72% reported chronic "nervousness and general tiredness" and 21% complained of "loss of memory" (55). The number in brackets (55) refers to the source article which you can then find at the bottom of the article in the references, you can then do a Google scholar search and if youre lucky the article will be online.

    The sources for information on the Iceland ME epidemic are
    54 A disease epidemic in Iceland simulating poliomyelitis.
    SIGURDSSON B, SIGURJONSSON J, SIGURDSSON JH, THORKELSSON J, GUDMUNDSSON KR.
    http://aje.oxfordjournals.org/content/52/2/222.extract

    55 Sigurdsson B, Gudmundsson KR. Clinical findings six years after outbreak of Akureyri Disease. Lancet 1957;i: 766-767. http://www.sciencedirect.com/science/article/pii/S0140673656912363

    56 Sigurdsson B, Gudnadottir M, Petursson G. Response to poliomyelitis vaccination. Lancet 1958;i: 370-371. http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(58)90989-9/fulltext

    Doctor Hyde also did an investigation into the long term effects of ME in the patients in Iceland which has been published AKUREYRI DISEASE (MYALGIC ENCEPHALOMYELITIS), FORTY YEARS LATER
    Byron Hyde , Sverrir Bergmann
    The Lancet, Volume 332, Issue 8621, Pages 1191 - 1192, 19 November 1988
    http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(88)90255-3/fulltext#

    The American airman bring ME back to the states from Iceland is in these articles

    57 Hart RH. Epidemic neuromyesthenia. N Eng J Med 1969;281:797. Cant find this one on line

    58 Henderson DA, Shelokov A. Epidemic neuromyesthenia. N Eng J Med 1959;260:757- 764. http://www.nejm.org/doi/full/10.1056/NEJM195904092601506

    This statement. More recent support for a relationship between poliovirus and ME came in 1989 when a "dangerously rising titre" to Type III poliovirus was documented in a patient who did not have polio but who had been diagnosed with ME (59). Is based on Dr Hydes work in

    Hyde BM, Jain A. Clinical observations of central nervous system dysfunction in post- infectious, acute onset ME/CFS. In BM Hyde J Goldstein, P Levine (Eds.) The Clinical and Scientific Basis of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome . Ottawa, Ontario: The Nightingale Research Foundation, 1992. Which can be purchased here http://www.nightingale.ca/index.php?target=bookoffer

    Hydes statement that

    Another curious feature is that many acute onset ME patients have incredibly high polio 1, 2, or 3
    antibody levels. They obviously do not have polio, but perhaps some of the viruses that cause acute onset
    ME are similar in nature to poliovirus.

    Is from http://www.wicfs-me.org/Pdf Files/Byron Hyde - Complexities of Diagnosis.pdf page 13.

    Dr Hyde has also had published an article called Three Babuska Clusters of Enteroviral-Associated Myalgic Encephalomyelitis by Byron Hyde MD
    Which unfortunately I cant find online, this may have more information about high levels of polio antibodies in ME patients in it? The only bit of it I can find on line is

    Although physicians associated with Nightingale have been studying both M.E. and CFS patients since 1984, it was only in 1995 that we began to include in the investigation of each new Nightingale M.E. patient, an evaluation by PCR for chronic persisting enteroviral infection. The material employed was frozen blood serum that was evaluated by the research team of the viral laboratory of Ruchill Hospital in Glasgow. These patients were re-evaluated approximately once or twice a year for a period of three years. Blood serum from control patients of similar age and sex were submitted with serum from M.E. patients. Blood from other patients with various autoimmune diseases or neurological illnesses were also submitted along with our samples. The names were changed in repeat samples. The serum received at Ruchill Hospital was divided into reserves and two blinded samples of this serum were investigated by PCR in different laboratories. Only when each sample source was found to be positive for the same enteroviral code was the serum accepted as having a specific circulating enterovirus.
    From HFME site, very frustrating I want to know what the rest says.

    Maybe there are people on the forum that have more information, or are in contact with Hyde who could get him to provide more information on his Enterovirus findings, and the high levels of Polio antibodies he has found in ME patients?

    All the best
     
  16. rlc

    rlc Senior Member

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    Hi Justin, dont know if you have this problem, but every year leading up to Christmas somebody always has to have a major disaster that I have to help them with. True to form, this happened yesterday, so I cant see myself having the time and energy to right up a blog any time soon, but if you want to write a blog, feel free to copy anything Ive written and Ill do my best to help if I have the time.

    Your right the Enterovirus family is responsible for a lot of cardiomyopathy, I would have thought this would be reason enough by its self for them to have developed vaccines and treatment for Enteroviruses, but unfortunately not so far, the interesting thing with Enteroviruses is that the same Enterovirus can cause very different illnesses in different patients, the exact same virus can cause myocarditis in one patient, encephalitis in another and a mild flu in other people, it all depends on the patients immune system and were in the body the virus travels to, brain, heart muscles, nervous system etc, They have found when doing needle biopsies for Enteroviruses for myocarditis, that the needle has to go in exactly the same place where the virus is, if it isnt in the right place the results come back negative, then if they redo the test in the right location, sometimes only centimetres from the original location the results are positive. Which makes me think when I see results from ME patients showing that only a percentage have Enteroviral infection, a lot maybe being missed just because the needle has missed the right spot. Seems like better testing methods need to be developed.

    There is a bit of research on herbs as treatments for Enteroviruses being done in China, which is where Dr Chia found the information for the treatment he uses for his patients, theres an interesting article here if youre interested http://www.itmonline.org/arts/coxsackie.htm

    This article in which they claim to have found Enteroviruses in ME patients is interesting because they also mention finding mitochondrial problems, and hypothalamic dysfunction, and when they infected mice with Enteroviruses they found increased Cytokins, and muscle lesions, which all fits in with other research finding in ME http://onlinelibrary.wiley.com/doi/10.1002/9780470514382.ch9/summary

    Theres a couple more interesting articles about finding Enteroviruses in ME patients here

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1669122/pdf/bmj00118-0028.pdf
    http://www.ncbi.nlm.nih.gov/pubmed/2161907

    All the best
     
    Antares in NYC likes this.
  17. justinreilly

    justinreilly Senior Member

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    ric, i'm not a big blogger (yet), so i won't take you up on that invitation. Just thought your knowledge here is really interesting and could lead somewhere good so I'd like to see it 'immortalized' rather than just get lost in a thread. Maybe some day when you are less besieged? Good luck with the holidays and helping your friend!
     
  18. rlc

    rlc Senior Member

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    Cheers Justin, know what you mean about important information getting lost in treads.

    Came across this piece of information which seems very important, all the evidence in the tread so far seems to very strongly implicate Enteroviruses, this bit of information could explain why Rituximab works? Although there has been some suggestion that it may be affecting the likes of EBV infections. I havent seen anyone mentioning Enteroviruses. In this study of Coxsackie B3 infection in mice http://www.ncbi.nlm.nih.gov/pmc/articles/PMC190986/pdf/708888.pdf guess which part of the immune system they found that Enteroviruses like to hide out in and avoid detection? B lymphocytes (B cells) they also suggest that the Enteroviruses hiding out in the B cell are disrupting the immune system and stopping it fighting the Enteroviruses, so maybe Rituximab by destroying B cells, is destroying the Enteroviruses hiding place, and exposing them to being destroyed by the immune system, which is no longer being disrupted by the Enteroviruses hiding in the B cells.

    Its unfortunate that so little attention is paid to the earlier research into ME, because it actually describes what ME is, and ME is the illness described in the earlier literature, its where the original name and definition of ME comes from, and theres no mixed cohorts or endless CFS nonsense causing confusion, in the documented ME epidemics they always found that whatever was causing the illness had a very short incubation period 4-7 days, if modern researchers were aware of these facts they wouldnt be wasting so much time and money wondering about viruses like Epstein Barr, because there incubation periods are far too long, which immediately rules them out as the cause of ME.

    If people are aware of the epidemics of ME, it makes speculation that it is an auto immune disease, immediately seem very silly, because you cant have epidemics of auto immune disease.

    Another interesting bit of information is that as Im sure you know SPECT scans show up damage in the brains of ME patients, there is a new anti Enteroviral medication that has been invented called Pleconaril, and a small study was done treating Enteroviral infected patients with this drug and measuring the response with SPECT scans, what they found was that as the patients improved with the drug, so did their SPECT scan results!! Which strongly suggests that Enteroviruses can cause failed SPECT scans, and treating the virus causes the SPECT scan results to improve. See http://www.ncbi.nlm.nih.gov/pubmed/12634077

    This study shows a patient with Enteroviral infection who had failed SPECT scan results, who then recovered and the SPECT scan results went back to normal http://www.sciencedirect.com/science/article/pii/S088789940000206X

    So it would appear that Enteroviruses can cause the failed SPECT scan results found in ME patients.

    Hopefully with the Lipkin study and the Rituximab results we should start to get some decent science done and the causes and cures found soon, and the disease finally taken out of the psychiatrists hands and given to real scientists to investigate.

    Have a great Christmas Justin, Ill keep posting as and when I have the time.

    All the best
     
  19. mrpanoff

    mrpanoff

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    Ok, after reading this topic and hfme.org I had my serum polio antibodies levels checked (cytopathic effect neutralisation method) and did enterovirus PCR (stool).

    I had an acute onset and a part of my symptoms holds something in common with what is described at hfme.org.

    PCR came back negative, antibody levels were more than modest, with serum dilutions of 1/32, 1/32, 1/16 to polio types 1, 2, 3 respectively.
     
  20. Levi

    Levi Senior Member

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    mrpanoff,
    Interesting. What lab was used for your serum polio antibodies? Was there a reference range? Viral reactivations tend to decline in intensity levels after the sudden onset. they do their damage to the immune system and fade back into the woodwork. How long ago was your onset?

     

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