1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
August 8th - What is the one thing about suffering with severe ME that the world needs to know?
Andrew Gladman brings our coverage of the Understanding & Remembrance Day for Severe ME, airing the voice of patients ...
Discuss the article on the Forums.

Judy Mikovits and David Kirby to speak at Autism Conference

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by Frickly, Feb 22, 2010.

  1. JillBohr

    JillBohr Senior Member

    Messages:
    247
    Likes:
    0
    Columbus, OH
    Hey Omerbasket, from reading Cort's comment, I think he was just commenting on the parents reaction to Dr. Mitkovits. As a matter of fact, I thought it was hilarious and I am a parent of two kids with autism. Trust me, I have corresponded with a lot of parents and they can be an angry crowd.

    Hey Acer2000, you make some valid points here. As a parent of 2 children wih autism, I want to know what actually caused their autism no matter how brutal the truth is. If it was caused by me passing down the XMRV retrovirus to them, so be it. If it was from some genetic mutation that I passed down to them, so be it. Although, I must say, research has poured the majority of their dollars and time into genetic research and they have come up with nothing. They are finally concentrating on epigenetics which is the study how environments can turn on/off certain genes. Well, that is the way I see it. There was an IACC meeting last January and there is a really great talk on epigenetics, methylation, etc. in twins. You can view the video here and I think the talk is about 1 hour and 10 mintues in.

    http://videocast.nih.gov/Summary.asp?File=15567
     
  2. acer2000

    acer2000 Senior Member

    Messages:
    616
    Likes:
    271
    Yeah I know and thats the "right way" to think about this. But not everyone is so rationalat least on first pass. Anyways, it is what it is. Whatever causes CFS and or Autism won't change, regardless of how people react emotionally to it.
     
  3. JillBohr

    JillBohr Senior Member

    Messages:
    247
    Likes:
    0
    Columbus, OH
    So true! And.... a lot more people are not rational even on the 2nd and 3rd pass. Sigh.
     
  4. omerbasket

    omerbasket Senior Member

    Messages:
    510
    Likes:
    13
    Okay, as I said I wasn't quiet sure what Cort meant, so thank you!
     
  5. FernRhizome

    FernRhizome Senior Member

    Messages:
    412
    Likes:
    0
    Does anyone know what happened when Mikovits gave her talk? Was there any new xmrv/autism data released? ~Fern
     
  6. JillBohr

    JillBohr Senior Member

    Messages:
    247
    Likes:
    0
    Columbus, OH
    It has not happened yet. It will be the weekend before memorial day. Woohooo!
     
  7. VillageLife

    VillageLife Senior Member

    Messages:
    674
    Likes:
    36
    United Kingdom
  8. Esther12

    Esther12 Senior Member

    Messages:
    5,387
    Likes:
    5,903
    Some CFS patients respond like this when they're told things they don't like by researchers too.

    It's not a good thing, but when people are so personally invested in something, it's hard for them to be grateful for information that goes against their prior beliefs.
     
  9. sunlady

    sunlady Guest

    Hi Jill,

    You are talking my language here.

    I have had ME (CCC) for more than 35 years and both of my children have autism.

    I, like you, want to know what caused their autism and believe epigenetics is involved with XMRV as the trigger. There are no other children in my family with autism.

    My younger son had a bad reaction to the polio vaccination which I believe was shown to have been inserted into mercury which was contaminated. Sorry, can't remember the exact details.

    I want some answers so that I can help my sons. If it means taking retrovirals for the rest of their lives so that they can be independent, then we will take them together.
     
  10. VillageLife

    VillageLife Senior Member

    Messages:
    674
    Likes:
    36
    United Kingdom
  11. parvofighter

    parvofighter Senior Member

    Messages:
    436
    Likes:
    99
    Canada
    *** Mikovits XMRV/Autism Lecture MAY be Available Live via Webcast

    Thanks so much Villagelife for your tip on the live streaming. OK, I viewed (part of) one of the sessions today.

    • Yes, it is streaming live (Well, sort of. See Timing note at end of this post)
    • There are concurrent sessions at AutismOne, but only one room seems to be getting webcast.
    • The session I saw was from Salon B - Mikovits will be presenting from Salon BC (presumably the same room, expanded)
    • So it appears possible that the Mikovits session on XMRV in autism MAY be the one that streams live.
    The live webcast is here: http://www.autismone.org/content/aut...streaming-live

    Schedule
    LOTS of interesting sessions on Friday-Sunday. You can see the full schedule here:
    http://conference.autismone.org/documents/autismone_schedules.pdf Note: I don't know if they'll always be webcasting from Salons B or BC. Here are some of the highlights:

    Friday
    8:00-9:00 am LaSalle BC Dr. Abha Chauhan

    Increased Oxidative Stress and Inflammatory Markers in the Blood and Brain

    4:00-5:00 pm Exec Forum Dr. Narasimham Parinandi

    Leaky Blood Vessel and Leaky Gut: Novel Sulfur-Containing Antioxidant Therapeutics for Treatment of ASD

    Saturday:
    11:30 am-12:30 pm Salon BC Jenny McCarthy

    KEYNOTE

    3:00-4:00 pm Salon BC Dr. Judy Mikovits

    XMRV

    4:00-5:00 pm Exec Forum David Kirby

    Metals, Myelin, Mitohondria, and Mouse Virus - Possible Paths to ASD?

    5:00-6:00 pm Salon BC Dr. William Walsh

    The Collision of Undermethylation, Epigenetics, and Oxidative Stress in ASD

    Sunday:
    11:30 am-12:30 pm Exec Forum Dr. Mark Geier & David Geier

    New Important Insights into the Treatment of ASD: Understanding Genetic Testing, Heavy Metals, Mitochondrial Dysfunction and Hormonal Imbalances.


    11:30 am-12:30 pm Madison Lisa Rupe & Angela Warner

    Autism and Immunization in the Military

    Timing: NB: When I logged on, the session I saw was playing 1 hour sooner than if should have real-time. Maybe they changed the times? Just to be safe, it might be worth logging on an hour earlier (corrected for Chicago time to your timezone), just in case things are "off" by an hour.

    Tapes available after? Posted? Can someone look into this?
     
  12. JillBohr

    JillBohr Senior Member

    Messages:
    247
    Likes:
    0
    Columbus, OH
    Hi Sunlady, I am so glad to see you here. Sorry for your ME but I tend to get a little excited when I see an ME person with ASD children.:D We appear to be getting more ME mummys with ASD kiddos here. I love this forum.
     
  13. natasa778

    natasa778 Senior Member

    Messages:
    1,494
    Likes:
    1,369
    London UK
    This is already quite old but I thought I'd reply just in case anyone was still reading :Retro smile: - to understand the vitriol towards Judy/WPI you must understand that there is a large underground of so called 'neurodiverse' guys and gals out there, most of them with high functioning autism (with a few lonely narcissoid types, and a few genuine psychos amongst them, and yeah a few parents who have bought into their neurodiverse psychobabble and now have no way out, because admitting they have been wrong would mean admitting they have done zero to help their very medically ill children), who believe that autism is a genetic predetermined fixed gift of nature, inherited in Mendelian fashion from their ancestors, who didn’t even know they were autistic. They identify themselves with their condition, the emergence of which they explain as some sort of positive natural selection …

    … to cut a long story short, as these guys validate their very sad existence through this constructed fairytale, they are dead set in keeping it alive at all costs.

    Most of these people have no friends and no job and spend most of their time roaming around the underground kingdom of Troll. They populate such sites as badscience, scienceblogs, oracland etc.. worshipping gods of venom such as ervlady and badsciencewhatshisname, and spewing poison against everything and everyone who talks about autism as a biomedical disorder that is potentially treatable or, God forbid, curable.

    Therefore anything or anyone who comes along bringing more evidence of anything that points to biological/medical/potentially treatable roots of autism will be met with utmost contempt and an ENORMOUS AMOUNT OF PURE HATRED.

    And the more danger they sense of anyone being on the right track, the more virulent will be their hatred, the more twisted the lies.
     
  14. sunlady

    sunlady Guest

    I think I can get you even more excited Jill, it certainly has the wonderful Judy M.

    My mother died of Chronic Myeloid Leukaemia,:( her sister has it and we have a female cousin with it too and Judy wants as many members of my family tested as possible.
     
  15. JillBohr

    JillBohr Senior Member

    Messages:
    247
    Likes:
    0
    Columbus, OH
    Oh my Sunlady. I am so sorry to hear about your mum but I must admit you do have interesting family. I would LOVE to see what Judy finds in your family blood. Yes, I must admit. I am excited. Don't you just LOVE Judy? I am sure she will be all over this.
     
  16. JillBohr

    JillBohr Senior Member

    Messages:
    247
    Likes:
    0
    Columbus, OH
    Natasa, you really nailed it (as always). I could not have said that better myself. I remember right after the Sky Walker tragedy when he killed his mother, some of the very people you described admitted that their ASD children became more violent as they grew older. One person on Huffington Post used to write glowing articles on autism and then admitted that her son kicked her so hard that he broke several of her ribs. If these kids do not get help soon, there are going to be a lot of injured parents (and sibs) out there along with their grown up ASD kids.
     
  17. parvofighter

    parvofighter Senior Member

    Messages:
    436
    Likes:
    99
    Canada
    Wow

    Jill, Natasa, Sunlady. Wow, your posts are just brimming with thoughtfulness and insight. Sunlady, I, too am so proud of you - and thankful to you- for getting your family tested. Yes, Dr M is a godsend to connect all these important dots. I genuinely believe that she and her retrovirology cohorts are going to blow neuro-immune diseases into the next millennium... and we've only just started this one. What a tragic way to connect the dots though: Chronic Myoeloid Leukemia, ASD, ME. And such shameful neglect over the DECADES.

    Natasa and Jill, what you're saying does resonate for me. Meanwhile, I'm racking my brains about a rare "soft touch" post I saw somewhere by an adult on the higher-functioning end of the ASD spectrum, who wrote about how she didn't want to lose her sense of identity by being treated. As I say, she sounded very high-functioning... and showed insight that when she was on a GF/CF diet, not only did her GI symptoms dramatically improve, but she also experienced much less social anxiety - which caused her considerable grief. I was struck by her struggle on the one hand not to lose her "self"; while exploring how far "well" she wanted to get.

    I'm also reminded of another anecdote I read somewhere of a brilliant jazz drummer who would stop taking his meds for Tourette's towards the weekend, to allow his virtuosic drumming to bear fruit on his weekend gigs. He'd resume his meds on Sunday, in time for the workweek.

    I suspect that for many patients on the mild end of the spectrum, first growing up and developing an identity as an Aspie, then potentially losing that identity, and its positive qualities, to treatment could be a terrifying prospect. And then the severe cases. Can we expect a Lorenzo's Oil type recovery? What challenges might come from treatment? These are very real questions.

    I'll try to find that post I refer to, because it just seemed to epitomize the struggle so many adult and young adult patients might go through. Do I want to get "well"? What will I lose? Is there a happy medium. Bottom line, I do have hope that some ASD patients might ultimately find their own happy medium if XMRV is found to be one of the causes.
     
  18. subtr4ct

    subtr4ct Senior Member

    Messages:
    112
    Likes:
    0
    Hi. Not meaning to hijack the thread, but I had a couple of random thoughts about XMRV and autism that want out of my head.

    1) It is interesting that a) prevalence of XMRV in the general population seems like it may be around 4%; b) I seem to remember hearing that the probability of the retrovirus HIV being passed from mother to child is around 1/4; and c) around 1% of children may end up with autism these days. Could easily all be coincidence.

    2) The study design, sample sizes, and diversity of the cohorts of studies looking at possible associations between vaccines and autism have been geared toward considering whether vaccines are the sole cause of autism. Much larger and more complex samples would seem necessary for correct inference in the case that autism is caused by XMRV infection + triggering event + possibly genetic susceptibility. For example, if only 1 to 4% of children were even susceptible to having vaccines trigger autism, then samples would need to consist of strictly XMRV+ kids or they would need to be 25 to 100 times larger than they would if 100% of kids were susceptible to achieve comparable statistical power.

    Okay, thanks -- returning thread to you all now.

    Has anyone come up with an account of what Dr. Mikovits presented?
     

See more popular forum discussions.

Share This Page