Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Coxiella burnetii dormancy in a fatal ten-year multisystem dysfunctional illness: case report

Discussion in 'Latest ME/CFS Research' started by Dolphin, Apr 20, 2016.

  1. Dolphin

    Dolphin Senior Member

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    Contains post-mortem results of somebody you had the diagnosis of “post viral syndrome”



    Free full text:

    http://bmcinfectdis.biomedcentral.com/articles/10.1186/s12879-016-1497-z


     
  2. msf

    msf Senior Member

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    Well, duh. That´s why the CDC says you need to treat it for 18 months with Doxy.

    (I´m saying duh to the authors, not you)
     
    Last edited: Apr 20, 2016
  3. msf

    msf Senior Member

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    So, post-Q fever Syndrome is actually chronic Q fever...and post-Lyme Syndrome is...
     
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  4. msf

    msf Senior Member

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    Does anyone else think it´s odd that the only chronic bacterial diseases that are treated as such are the ones that kill you fairly quickly? I´m thinking Q fever, Glanders (thanks The Americans!), Tuberculosis. There doesn´t seem to me to be any reason why this should be the case, unless the reason is that it is much harder to ignore people and pretend that they are not really ill when they die at 29.
     
    Last edited: Apr 21, 2016
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  5. msf

    msf Senior Member

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    ´Some of the scepticism and difficulty of acceptance of QFS may have rested on a mistaken assumption that the model of infection with the small intracellular bacterium, Coxiella burnetii, would follow a familiar set of characteristics of invasion, bacteraemia, inflammatory responses, finally resolution with rising antibody levels, acquired cellular immune responses and elimination of the invading organism´

    I feel like a lot of doctors make this mistake.
     
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  6. anciendaze

    anciendaze Senior Member

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    Coxiella Burnetii is a bacterial pathogen living inside cells, like other Rickettsia. So why was a case of this called a post-viral syndrome?
     
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  7. Scarecrow

    Scarecrow Annie Gsampel

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    Scotland
    C burnetti wasn't identified until post mortem:

     
  8. Justin30

    Justin30 Senior Member

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    So my guess is that Drs failed to test titers for Q Fever at onset or later on down the line? Using test like in Canada and Europe dont test active infective titers.....they seem to be much more sensitive as many have found by getying tested in the US.

    It mentioned that she had Encephalitis like-illness how much do you want to bet the Drs didnt test her spinal fluid.

    Labeled her with PVFS and she was left to rot like many people that are labeled with one of a thousand names given to this disease.

    I hate reading about these stories...so sad...preventable in my eyes
     
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  9. aaron_c

    aaron_c Senior Member

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    Why isn't there a project to do autopsies like this on everyone (they can) who dies with ME/CFS? I know Jered Younger suggested that there are too many confounding factors when someone dies with ME/CFS, but...I don't know if I buy that, as long as you keep everything in perspective.

    A second question I have (and I hope someone who knows more can help me) is why we don't do tests like this on people who are alive? I understand that most of us probably don't have Coxiella burnetii, and I also understand that many of the tests done were done on places we don't want to biopsy, like bone marrow or the brain. Finally, I understand that in this case maybe they didn't do the tests in 1996 (which she died) because they weren't available yet. But--and I know very little about testing--why can't we take liver biopsies and test ourselves with PCR tests for...Coxsackie Virus, for example? Or am I talking jibberish?
     
  10. Dolphin

    Dolphin Senior Member

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    The ME Association and Action for ME have done a feasibility study on this [post-mortem biobank]. They are interested but don't have the money.
     
    Last edited: Apr 21, 2016
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