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Autistic Child Tests Positive for XMRV

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by Summer, Jan 9, 2010.

  1. Countrygirl

    Countrygirl Senior Member

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    Hi fresh eyes,

    Have just googled to check if abnormal pupil responses are especially noted in M.E. Interestingly, it is frequently documented.
  2. starryeyes

    starryeyes Senior Member

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    Jill,

    I would wait if I were you. Wait until they come up with a treatment for it and by then the price for the test may have dropped down.

    I know you're desperate for answers but I think you'll be happier if you save your money for treatment or at least try to.

    Sorry you have to deal with all this.

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~

    Yes, PWC do have problems with their pupils adjusting or not adjusting to light. That's part of why we have light sensitivity. I found out my pupils don't react correctly when my CFS was mild and I was teaching about the pupil response. We all did an activity where we use light and darkness to test each others' pupils in my class and my students were telling me that mine weren't responding. I went from student to student asking if they were and they all said they weren't.

    I didn't suffer from light sensitivity back then either. I chalked it up to another weird CFS symptom.
  3. Hi Fresh Eyes. My pupil response has been noted as sluggish by an Optician and a Neurologist.

    This is apparently a common observation in neurological ME (Myalgic Encephalomyeltis).

    I should mention it's a common finding in Autonomic Nervous System dysfunction/Neuropathy.
    (ANS dysfunction is legion in ME).

    Also note this feature we are discussing here would invalidate any of us from having CFS

    “Abnormal physical signs should not be accepted as compatible with a diagnosis of CFS"

    Professor Michael Sharpe
    Chronic fatigue syndrome and occupational health. A Mountstephen and M Sharpe
    Occup Med 1997:47:4:217-227












    Also note this feature would invalidate us from the Imperial College XMRV UK study.

    Hence we are all 'hidden' away in society........
  4. CJB

    CJB Senior Member

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    Does that explain why I've been so miserable after having my pupils dilated for exam every time?
  5. Hi Fresh Eyes. My pupil response has been noted as sluggish by an Optician and a Neurologist.

    This is apparently a common observation in neurological ME (Myalgic Encephalomyeltis) and Autonomic Nervous System dysfunction/Neuropathy.
    (ANS dysfunction is legion in ME - interestingly).

    This feature we are discussing here about pupil dilation would invalidate any of us from having CFS

    “Abnormal physical signs should not be accepted as compatible with a diagnosis of CFS"

    Professor Michael Sharpe - Professor Simon Wessely's colleague.
    Chronic fatigue syndrome and occupational health. A Mountstephen and M Sharpe
    Occup Med 1997:47:4:217-227

    Also note this feature would invalidate us from the Imperial College XMRV UK study.

    Hence we are all the ''undeserving sick of our society and our health service.''
    Professor Michael Sharpe - Professor Simon Wessely's colleague.
    University of Strathclyde Lecture, 1999
    "M.E. What do we know (real illness or all in the mind?)

    It's interesting to note so far we have the comments from Dr Mikovits that XMRV is linked to Autism, and now this news inside this thread.
    It won't be beyond the realms of possibilty that 'CFS' (Neuro Immune disease rebranded CFS) and Autism share a common pathogen.

    :rolleyes:
  6. natasa778

    natasa778 Senior Member

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    Dr Klimas talks about it in her recent presentation, in one of the later segments.

    There is a group of doctors under the umbrella term of NIDS - neuroimmune dysfunction syndrome, approaching and treating autism as a consequence of viral infections and immune dysfunction. Excellent presentation by a doctor whose wife suffered CFS years ago, when he clicked that his pediatric "autism" patients display exact same symptoms and respond to same treatments: http://www.tarzanacme.com/video.asp?VidID=notautism
  7. gracenote

    gracenote All shall be well . . .

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    might be the drops

    CJB,

    On another thread in a galaxy far away, some of us discussed the eye drops used for dilation. I've had to request mine be without epinephrine (although I'm not sure it is called that). When my optometrist used the other drops, it was much better.
  8. flybro

    flybro Senior Member

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    The pupil dialation stuff was really painful for me.

    My daughter that's ASD has different coloured eyes.
  9. Martlet

    Martlet Senior Member

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    That is so bizarre. I have ALWAYS had a slow pupil response.
  10. fresh_eyes

    fresh_eyes happy to be here

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    So, kind of a basic question here - is testing pupil response part of a normal eye exam, like to get prescription glasses? I've only had one of those, ever, and don't remember anything about pupil response. Also it didn't involve the drops that expand the pupil, I don't know why.

    Perhaps related? When I first came down with CFS my vision took a rapid nose dive and I had to get glasses for the first time. Night vision in particular. And my vision seems to fluctuate with my overall ups and downs. Anyone else?
  11. Lily

    Lily *Believe*

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    I read a significant paper on this a couple of years ago. It's very common in CFS and FM to have eye problems. It has been noted that muscles of the eye weaken and become sluggish espcially during a crash, just as any other muscles. Also, part of the problem with photophobia is attributed to sluggish pupil reaction. Our visual problems are especially noted when looking at something up close then far away. Normally there is an instant adjustment, but in CFS and FM, it's slower. There was a lot of numbers and measurements that verified this. That was about all I can remember. Except there was something about certain optometrists being trained to deal with this......It was a very interesting article. You can find it probably by googling CFS + vision problems. I think that's how I found it because I was having significant new problems for the first time. I should probably have tried to find it again instead of going through all this garble. I might just do that!
  12. Hysterical Woman

    Hysterical Woman Senior Member

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    Could the sluggish pupil response be considered Horner's Syndrome?

    Just trying to make sense of some of this.

    Take care,

    Maxine
  13. fresh_eyes

    fresh_eyes happy to be here

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  14. flybro

    flybro Senior Member

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    Yep WOW Maxine

    In children Horner syndrome sometimes leads to a difference in eye color between the two eyes.
  15. muffin

    muffin Senior Member

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    Let us all hope and pray

    that XMRV (and the other Retroviruses out there NOT being discussed) are the cause or play a major cause in CFIDS/ME, Autism, cancers, and many other diseases - despite the damage done over and over by William Reeves and Simon Wessely.

    Again - do we have a lawyer out there who has any interest in bringing a class action against the CDC and/or Reeves here in the US??????

    I don't know what can be done against Wessely in the UK, legally. But, something must be done to stop that moron as well.

    Why are these two schmucks so hateful and destructive? Both are at the age of retirement and should be thinking of a nice warm place to retire and play golf instead of continuing to damage millions and millions of sick people - not just us CFIDS/ME people but all those kids/adults with Autism (numbers on that disease have gone through the roof in past 2 decades - why?).

    Rambling: Do we have a lawyer in the house??????
  16. Hysterical Woman

    Hysterical Woman Senior Member

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    Fresh_eye/flybro/Eye stuff

    Hi Guys,

    I thought it was fascinating to read about Horner's Syndrome. When you were discussing the pupil thing earlier, I remembered seeing an opthamologist years ago who told me that my pupils didn't dilate at the same rates. He spent an inordinate amount of time looking at them because he said it could be a symptom of a brain tumor. This was years before I had CFS. At the end of the exam he said he was confident that what I had wasn't an indication of a brain tumor and since that was years and years ago, he must have been right. He said it was possibly from a fall or car accident when I was very young.

    I also remember reading somewhere that opthamologists (not optomistrists) can sometimes help primary care docs diagnose difficult illnesses. If I am not mistaken, opthamologists are M.D.'s who go on to specialize in diseases of the eye. I used to wonder whether I should try to find a good one since contracting CFS, but, like most of us, have to be careful about how I spend my $$$. It might be worth it, tho - especially if one can get their insurance to pay for it.

    In any case, I came across the Horner's information and was fascinated by it. I hope it helps others to read it.

    Take care,

    Maxine
  17. Hysterical Woman

    Hysterical Woman Senior Member

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    Flybro,

    Please let me know if you check this out in your daughter.

    Take care,

    Maxine
  18. flybro

    flybro Senior Member

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    I will Maxine,

    I'm awaiting a fragile-x refferal currently. If and when I get to see a geneticist I intend to leave no question unasked or unaswered.

    I hope I get a nice understanding geneticist that can explain things in easy english to me.
  19. jewel

    jewel Senior Member

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    Levi-- I agree with you about waiting for the above before overgeneralizing from preliminary studies -- I hope that Oprah is still on the air at that time-- but I also understand wanting to act, wanting a cure immediately! My thanks to the person who posted the link to Dr. Goldberg's talk. I find this simultaneously fascinating, hopeful, and very, very sad. As much as intensive behavioral, speech and OT interventions (and social skills training, rdi, etc.etc) can be very helpful to young children on the spectrum, what a shame it would be if all of the resources stay "downstream" to help kids function despite a malfunctioning neuroimmune system, rather than, if these medical approaches are correct, strengthening the neuroimmune system through diet, and/or using as appropriate antivirals/antimicrobials to eliminate or keep at bay chronic or recurrent viral, bacterial, and/or fungal infections that are causing the poor brain functioning (and at worse, brain damage) to begin with. I work in the field; families have been on their own for the medical aspects of these disorders. Doctors refer to schools or regional centers for the funding of direct interventions (educationally-based), but the medical field by and large has not provided or paid for treatment (either speech, ot, educational interventions or medically-based ones). At least, that has been my experience.... Anyway, it will be interesting to see how xmrv plays out in this population as well, but it is also interesting to see how some of the same other infections (EBV, HHV6,etc) implicated in CFS are also implicated in autism spectrum disorders, possibly in ADD etc. Hopeful, and yet sad for the families and kids who have not been sufficiently helped by existing educ. treatments, and it is hard enough to get these as it is. Hopeful that there continues to be energy and synergy in the research findings...
    Signing off, Jule
  20. Lily

    Lily *Believe*

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    I've always been one to prefer seeing an ophthalmologist over an optometrist until the last few years. Years ago optometrists could not perform as comprehensive exams as they do now. I think it's a good idea to see an ophthalmologist once in a while. Well I did, anyway, when it wasn't such a big deal to get to a doctor appointment.

    I had an interesting exam by a neuro-ophthalmologist that my neurologist referred me to for suspected optic neuritis. Now that was one long ordeal. I would never have made it in my current condition and barely made it then. It was exhausting and took about 3 hours. The neuo-ophthalImologist ended up refering me to a retinologist. I've not seen anyone for all of the weirdness I've experienced during the past 3 years though.

    I think I'd save my money if I were you, Maxine. That is unless you begin to have some scary new symptoms. Insurance would cover any suspected medical issue.

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