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Hunting down the cause of ME/CFS & other challenging disorders - Lipkin in London
In a talk to patients in London on 3rd September, Dr. W. Ian Lipkin described the extraordinary lengths he and his team are prepared to go to in order to track down the source of an illness, with examples ranging from autism to the strange case of Kawasaki disease.
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Autism and CFS 'research'

Discussion in 'XMRV Research and Replication Studies' started by redo, Jul 11, 2010.

  1. redo

    redo Senior Member

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    Hi all,

    I've been searching through these forums for autism, and it seems to me that it's pretty prevalent among people with CFS to have autism in the family. But when I searched for it on PubMed, there's not a lot of studies which have been done on it.

    Came to think of it, the people here at the Phoenix Rising forums could do a lot to spark research interest in this field...

    Here's my idea of how it could be done. Any suggestions or comments are welcome.

    We could do an unscientific, yet interesting survey where the people behind this forum would chose 100 random members, and send them a PM. The PM would be for a survey where they'd be asked these simple two question:

    If you are diagnosed with CFS, please participate in the survey:
    - How many siblings do you have?
    - And if some of them have autism, how many of them have it?

    After that the numbers could be compared with autism levels in the general population, and it could become a blog post.

    The reason for suggesting to go for PMs instead of normal polls is that those who have it in the family would (perhaps) be more inclined to answer than others if it's just an open poll. Some might feel that it's too personal to answer, but that doesn't matter much. They are free to not answer if they don't wish to do so...

    It's very likely that such a poll could spark interest from scientist to take a thorough look at this. If they have just a little funds and time, I guess a larger, and scientifically valid study would be no-problemo to put together for them. But they need the bait...
     
  2. redo

    redo Senior Member

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    FYI, I put this in the XMRV section because autism and XMRV has lately been linked. And if autism is more prevalent, it could suggest that XMRV is congenital (a lot to write about, I made a post about it here). Anyway, that's why I put it in the XMRV section.

    Back to topic. Could or should this be done? Should there be more or different questions?
     
  3. redo

    redo Senior Member

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    I think Mikovits would appreciate it to see the results of such a survey. It could be done pretty easily.
     
  4. ukxmrv

    ukxmrv Senior Member

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    Could it also include extended family members like nieces and nephews please? Also could it contain "suspected autism" and "suspected aspingers"? (SP?)

    It seems that in my family the youngsters are being investigated and then left to "see what happens" or with a question mark over them. No formal diagnosis given.
     
  5. richvank

    richvank Senior Member

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    Hi, redo.

    You might be interested in a paper by Jill James (abstract below). It doesn't specifically mention CFS, but I have found that the methylation and folate related issues in autism are also present in CFS (see www.cfsresearch.org). I think Jill is continuing to study this connection. This issue was raised to her and to me several years ago by Laurette Janak, who has spoken at the AutismOne conferences. She noted that there are quite a few mothers with CFS who have children with autism. I recently heard Jill speak at the M.I.N.D. Institute of UC-Davis, and she said that she is collaborating with Judy Mikovits on a project, which I think involves looking for XMRV in autistic children.

    Best regards,

    Rich

    Am J Med Genet B Neuropsychiatr Genet. 2010 May 12. [Epub ahead of print]
    A functional polymorphism in the reduced folate carrier gene and DNA hypomethylation in mothers of children with autism.

    James SJ, Melnyk S, Jernigan S, Pavliv O, Trusty T, Lehman S, Seidel L, Gaylor DW, Cleves MA.

    Department of Pediatrics, University of Arkansas for Medical Sciences, Little Rock, Arkansas.
    Abstract

    The biologic basis of autism is complex and is thought to involve multiple and variable gene-environment interactions. While the logical focus has been on the affected child, the impact of maternal genetics on intrauterine microenvironment during pivotal developmental windows could be substantial. Folate-dependent one carbon metabolism is a highly polymorphic pathway that regulates the distribution of one-carbon derivatives between DNA synthesis (proliferation) and DNA methylation (cell-specific gene expression and differentiation). These pathways are essential to support the programmed shifts between proliferation and differentiation during embryogenesis and organogenesis. Maternal genetic variants that compromise intrauterine availability of folate derivatives could alter fetal cell trajectories and disrupt normal neurodevelopment. In this investigation, the frequency of common functional polymorphisms in the folate pathway was investigated in a large population-based sample of autism case-parent triads. In case-control analysis, a significant increase in the reduced folate carrier (RFC1) G allele frequency was found among case mothers, but not among fathers or affected children. Subsequent log linear analysis of the RFC1 A80G genotype within family trios revealed that the maternal G allele was associated with a significant increase in risk of autism whereas the inherited genotype of the child was not. Further, maternal DNA from the autism mothers was found to be significantly hypomethylated relative to reference control DNA. Metabolic profiling indicated that plasma homocysteine, adenosine, and S-adenosylhomocyteine were significantly elevated among autism mothers consistent with reduced methylation capacity and DNA hypomethylation. Together, these results suggest that the maternal genetics/epigenetics may influence fetal predisposition to autism. (c) 2010 Wiley-Liss, Inc.

    PMID: 20468076 [PubMed - as supplied by publisher]
     
  6. richvank

    richvank Senior Member

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    Hi, redo.

    Dr. James published an earlier paper in this area, also. Sorry there's no abstract on PubMed, but here's the citation:

    J Autism Dev Disord. 2008 Nov;38(10):1976.
    Abnormal Transmethylation/transsulfuration Metabolism and DNA Hypomethylation Among Parents of Children with Autism.

    James SJ, Melnyk S, Jernigan S, Hubanks A, Rose S, Gaylor DW.

    Department of Pediatrics, University of Arkansas for Medical Sciences, Little Rock, AR, 72202, USA, jamesjill@uams.edu.

    PMID: 19011973 [PubMed - indexed for MEDLINE]

    Best regards,

    Rich
     
  7. redo

    redo Senior Member

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    If you could do a count yourself, of your extended family, I'd appreciate that. You can post total number of relatives counted, and total suspected or diagnosed cases.

    If doing a larger survey, then I though nuclear family would be best, but this thread isn't a survey ;-)
     
  8. redo

    redo Senior Member

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    Thanks a lot for the abstracts rich.
     
  9. Hi Rich

    My doctor told me that you have updated your methylation cycle block protocol to include 5MTH5 (a form of methyl folate, I was told). Can you please give me a link to your most recent protocol?

    Thanks a lot.

    Jane
     
  10. richvank

    richvank Senior Member

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    Hi, Jane.

    The protocol has actually always had 5-methyl THF in it, since I first suggested it in early 2007. I did make one change to the initial protocol, because Metagenics changed the formulation of Intrinsi/B12/folate. I switched that to Actifolate, to keep folinic acid in the protocol, because it supports the synthesis of new RNA and DNA as well as the metabolism of figlu.

    You can find the revised protocol at www.cfsresearch.org by clicking on CFS/M.E. and then on my name. It's the last item on the list there.

    Best regards,

    Rich
     
  11. Thanks very much, Rich.

    Best wishes
    Jane
     
  12. judderwocky

    judderwocky Senior Member

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    thanks for the info :)
     
  13. taniaaust1

    taniaaust1

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    Very interesting.. I have a MTHFR polymorphism (affects folate) and hence also have higher than most levels of homocysteine .. and have an child on the Autism spectrum.. so all that stuff fits. So I guess this means if I was taking folate while pregnant... my daughter may not now have Asperger's??
     
  14. taniaaust1

    taniaaust1

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    redo.. i hope if anyone did a survey like that.. that they ask If there is any members in the family with confirmed Asperger's or Autism? and "are there any members in the family with suspected Asperger's or Autism" as most families with these problems have other members of their families which they know have it too as so many go undiagnosed. Also "Have you yourself got Asperger's or Autism confirmed or suspected? (i think there needs to be an option there to also pass on a question.. as many with it themselves may not wish to say so.
     
  15. SickOfSickness

    SickOfSickness Senior Member

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    I want a survey done too, and I may be able to help with hosting/creating the survey or other. How can we keep it more scientific but make it possible to do? What if a bunch of us ask everyone on multiple forums to please take the quick survey? If we had thousands replying, that would help to minimize statistical problems of a smaller pool. And we would encourage them to please take it and just say no, if they don't have the relatives with autism/AS. I would be worried that people with affected relatives are more likely to take the survey. But it would get us some kind of data. Everyone can send me a private message if you have ideas or want to work on this.
     
  16. richvank

    richvank Senior Member

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    Hi, tania.

    That's a very tough question to answer. First, I don't think anybody can say this for sure. Second, because I know that mothers tend to blame themselves if their children have problems, and I don't want to encourage that, because it doesn't change anything for the better for the people directly involved. Of course, being aware of the need for folate during pregnancy can help other prospective mothers to try to avoid problems that might result from folate deficiency.

    I think the good news is that treating to support the methylation cycle and associated biochemical pathways can often help a person who is on the autism spectrum. The DAN! project and Dr. Amy Yasko's organization have been able to help a lot of people with this type of approach.

    Best regards,

    Rich
     
  17. Mark

    Mark Acting CEO

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    The survey idea is great, I'm sure Cort will be interested. Admins could help improve quality of the randomising, by providing two lists based on random seeds: eg >100 posts, >2 posts. (This sort of distinction would help hint at any "echo chamber" effect skewing the results). I'd be really interested in this. Ultimately, I'm afraid it has to be accepted, that it is only data about the current makeup of this forum, but it is still data about real people...

    ETA: Also note that this is true of any sampling population, and that I don't see how our survey population is any more or less valid than that of the ME Association, or anybody else for that matter. With no agreed definition or diagnostic criteria, or agreement about what we're actually studying, all such quibbles are pretty moot anyway...
     
  18. xrayspex

    xrayspex Senior Member

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    hey tanaaist-how did you get tested for polymorphisms? i would like to do that, lookd into it over a year ago but don't recall how to start...
     
  19. taniaaust1

    taniaaust1

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    The one i had shows up on a Thrombophilia Genotypes test and is quite common in the population. That test thou only tests a few things.
     
  20. SickOfSickness

    SickOfSickness Senior Member

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    This may have been said already. I think there needs to be no/unsure options in addition to the yes/probably options. I mean. Yes, confirmed diagnosis. Probably or suspected diagnosis. Uncertain but not suspected. No, pretty certain not in family history.

    Perhaps if someone in a family has CFS then maybe that family has a much increased chance of having autism spectrum disorders at some point. Maybe they haven't shown up yet but they may with each new child in that family tree. OCD should be considered part of the spectrum too, I read something saying how it's even more intense of a disorder than Asperger's. And ADHD is less than Asperger's but part of the spectrum.
     

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