Invisible Illness Awareness Week 2016: Our Voices Need to Be Heard
Never heard of Invisible Illness Awareness Week? You're not alone. Jody Smith sheds a little light to make it more visible
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Discussion in 'General ME/CFS Discussion' started by Sandman00747, Apr 12, 2016.

  1. Sandman00747

    Sandman00747

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    United States, Kansas

    Over the years I have been reading more and more of these types of articles by various docs and scientists. This would certainly be a good explanation as to why we all have so many similar symptoms and yet many different symptoms and degrees of illness. I must say these types of articles greatly alarm me!

    https://gdsajj.wordpress.com/2012/05/10/the-hidden-polio-epidemic/
     
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  2. aaron_c

    aaron_c Senior Member

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    Interesting... But the author appears to be much too certain that he is right. He quotes other people as agreeing with him, but as far as I can tell he is the only one saying that this is an open-and-shut case. Even if what he says about some polio caregivers coming down with CFS is true, it doesn't preclude the role of other triggers, infectious or otherwise.

    Basically, I have heard this tune so many times before (ME/CFS is hidden Lymes! ME/CFS is Ehler's Danlos Syndrome! Or definitely XMRV!) that I don't pay it too much attention.
     
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  3. Skippa

    Skippa Senior Member

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    Sounds so plausible ... But then... Advocates resisting all vaccinations and promotes homeopathy. Oh dear, it was going so well!
     
  4. halcyon

    halcyon Senior Member

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    The anti-vax sentiment is highly misguided in my opinion, but there are some other important points in there. I don't think the answer is less vaccination, probably the opposite. Eradicating polio didn't create ME, it just unmasked the fact that poliovirus has other neurotropic cousins that could be just as devastating, just in a different way.
     
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  5. Jonathan Edwards

    Jonathan Edwards Senior Member

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    I don't think you need to be alarmed. The author may be a doc but is not a scientist. It is not even an article really - just ramblings to fit in with the author's preconceived ideas. No need for alarm. CFS is not polio.
     
  6. TiredSam

    TiredSam The wise nematode hibernates

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    Thanks for that, saves me reading the article.
     
  7. Sandman00747

    Sandman00747

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    Skippa, I should have mentioned the anti-vax part was too much for me also. I was just interested in people's thoughts on the coxsackie or polio connection to ME/CFS. However, I knew several Gulf War soldiers and from what they told me I don't think anyone should receive that many vaccinations(they said they were told 10 or 12) at the same time. That may well kill me in my state today!
     
    Last edited: Apr 13, 2016
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  8. alex3619

    alex3619 Senior Member

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    There is not much doubt that some vaccines in some people can trigger CFS. However what we do not know is how many will get CFS from severe infections because they were not vaccinated. Had the measles vaccine existed when I was a child I might not have become sick. Vaccines are tricky things, and they can cause harm, but they also prevent a great deal of harm. The specific vaccine, for a specific patient, has to be considered when thinking about potential harm.

    Coxsackie virus triggers are common in ME and CFS. Its also known that some strains of Coxsackie, in mice, can induce a polio like syndrome. However this is a different virus family, and we need to treat it as such.

    There is also a correlation between polio outbreaks and ME outbreaks for last century. However not all polio outbreaks resulted in ME, and not all ME outbreaks are linked to polio. While I have speculated about a link for maybe twenty years now, its one thing to call it speculation and another to say its certain. I wouldn't want to do that with current evidence. However I wouldn't want to completely dismiss it either, and I would treat it as a research question at most.

    You can't just interchange polio with Coxsackie in an argument. They are not the same. You might be able to draw some analogies, then speculate, then pose research questions which would need to be investigated.

    I consider it likely that a Coxsackie infection triggered my ME from mild to moderate in 1985, for a few reasons I shan't mention here.

    We know this virus can trigger ME. We know that some research shows possible persistent gut infection. We do not know Coxsackie is ME.

    I would like to add that, if I recall correctly, paralysis was an uncommon symptom of polio. Very few ME patients develop full paralysis. We hear of a few isolated cases, though I am not aware of any study investigating this epidemiologically. What I am unsure of, and have not investigated, is the full range of polio symptoms aside from paralysis. I do know there was enough similarity that it was long speculated that post polio syndrome is ME. However my suspicion is that its more likely that ME includes post polio syndrome, rather than the other way around. ME appears, at least for now, to be in part a post pathogen syndrome with wide etiology.

    I find the speculation about Coxsackie operating in the missing niche that used to be occupied by polio to be a bit of a leap. Its not impossible, but its beyond even idle speculation. I have considered this in the past myself, and I do not find any persuasive evidence that this can occur. It can happen with some strains of bacteria due to how they communicate, or outright competition, but I don't think viruses communicate like that. However there is some suggestion that viral responses may change depending on existing co-infections, so I cannot completely rule it out either.

    PS It might help to think of bacteria as an ecology, but viruses swarm. They are more like locusts than most things in an ecology.
     
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  9. Sandman00747

    Sandman00747

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    Alex, I so enjoy and take interest in your well thought out and educated responses to many questions including mine and have followed you for several years. Thank you so much!
     
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  10. halcyon

    halcyon Senior Member

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    The connection is well established and has been since at least the 1970s. Echovirus is one of the only viral agents to be found during an ME outbreak.
     
  11. halcyon

    halcyon Senior Member

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    I agree it's a bit of a leap but my guess is that nobody knows for sure. Given that polio is mostly eradicated this particular topic will likely never be studied. There are certain serotypes of coxsackievirus and echovirus that are more commonly seen than others, perhaps poliovirus was yet even more common and was the dominant enterovirus. We do know that it's possible for poliovirus (and other enteroviruses) to cause persistent GI infection even in healthy individuals. They find this sometimes in vaccinated individuals who are shedding poliovirus in their stool. The only question is what happens during superinfection. Do the viruses cooperate or do they antagonize each other?

    Again I don't think it much matters because ME outbreaks were happening while polio was still around so that probably answers the question.
     
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