Poll on Children of CFS patients and Autism

If you have CFS and have had children are they on the autism spectrum

  • Yes

    Votes: 4 44.4%
  • no

    Votes: 4 44.4%
  • Suspect

    Votes: 1 11.1%

  • Total voters
    9
  • Poll closed .

Kati

Patient in training
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I know of someone that has chronic lyme (very similar to CFS) with 2 out of 3 kids that have autism, one quite severe.
 
A

Anne_68

Guest
Chiming in late

I believe mine is on the Spectrum.

Natasha Campbell McBride mentions how parents of ASD kids often have one or both parents with CFS/ME or Fibromyalgia in her book Gut and Psychology Syndrome.
 

Mark

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As always, speculating from a tiny sample size...the numbers and anecdotal accounts of families I've seen on this question so far all make the first estimate that it could be a 50% chance. Hmm...is that possibly 'cause it's mainly the boys? Or because something completely different/opposite happens with the other 50%...

It would seem amazing if it could be anything like this high and go unnoticed, but since we barely officially exist, stats-wise, anything's possible! Also, we should bear in mind that with autism being a spectrum with no logical cut-off, any XMRV effect could be more or less severe and could go unremarked. Finally, to state the obvious, this poll will inevitably be very biased towards those who answer Yes because such people will be attracted to the thread.
 

bakercape

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I would like to add

that my 2 boys are on the higher end of the spectrum. One has been diagnosed pdd-nos. The other aspergers. Although higher functioning they were diagnosed at a young age by experts in the field. Both have tremendous anxiety problems and sensory issues. Verbally they have strength.
 
K

Katie

Guest
Any chance of redoing this poll but to give more options? Maybe separate Aspergers and Autism and maybe give the chance to vote multiple times in case someone has one child with autism and one child who doesn't?

I'm also interested in people where both parents have ME as that is my personal situation but I think the poll would be getting far too complicated. I'd like to see another poll go up though, it would be interesting.
 
A

anne

Guest
Our boy is fine, he's almost 3 so we'd catch it by now. Nonetheless, this topic scares the pants off me.
 

richvank

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Autism and CFS linked in families

Hi, all.

Laurette Janak noticed this correlation some years ago, and she contacted me because I had had a short article published in the Townsend Letter linking CFS and autism. Laurette had observed that several of the mothers of autistic children whom she knew had CFS.

We were interviewed together by Teri Small (now Teri Aranga) on AutismOne Radio. I think the interview is no longer in their archives now, but we made the case that CFS and autism appear to be the same disorder, differing by age at onset, which produces the differences in symptoms and epidemiology.

Laurette went on to get Jill James interested in doing a study, and she has published one paper showing that the parents of autistic children also have abnormalities in their methylation cycle related metabolites. However, it is not clear whether this results from a genetic cause, or whether it is simply due to the stress involved in having an autistic child.

The abstract of the paper is below. The full paper is available free from PubMed.

Rich



J Autism Dev Disord. 2008 Nov;38(10):1966-75. Epub 2008 May 30.

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

Erratum in:

* J Autism Dev Disord. 2008 Nov;38(10):1976. Jill James, S [corrected to James, S Jill].

An integrated metabolic profile reflects the combined influence of genetic, epigenetic, and environmental factors that affect the candidate pathway of interest. Recent evidence suggests that some autistic children may have reduced detoxification capacity and may be under chronic oxidative stress. Based on reports of abnormal methionine and glutathione metabolism in autistic children, it was of interest to examine the same metabolic profile in the parents. The results indicated that parents share similar metabolic deficits in methylation capacity and glutathione-dependent antioxidant/detoxification capacity observed in many autistic children. Studies are underway to determine whether the abnormal profile in parents reflects linked genetic polymorphisms in these pathways or whether it simply reflects the chronic stress of coping with an autistic child.

PMID: 18512136 [PubMed - indexed for MEDLINE]
 

bakercape

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why has

a link between CFS and autism not been studied extensively already. Is it because we don't exist in the eyes of the medical community. It is interesting that many of my sons symptoms are similiar to my own. The trouble concentrating/ memory. The anxiety and sensory problems. One of my sons even complaind of periodiaclly having a "wierd feeling" he calls it where he feels dizzy and needs to lay down for half an hour because he is so tired. This happens to him about once a week. Possible NMH?
I would think the autism community would be very interested in a possible link between CFS and Autism and possibly XMRV. What would it take to draw them into this?
Also why can no one vote in this poll anymore? Is there a time limit on polls?
 
A

anne

Guest
bakercape, that is very classic NHM, and I had that as a teenager. The good thing about it is it's tangible and diagnosable and there is, for some, help on it. His pediatrician SHOULD be somewhat aware of it, enough to give him a referral to either a cardiologist or neurologist. If that doesn't work you might poke around and see who does tilt table tests in your area. In the meantime, try gatorade and salt....
 

starryeyes

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bakercape Wrote: One of my sons even complaind of periodiaclly having a "wierd feeling" he calls it where he feels dizzy and needs to lay down for half an hour because he is so tired.
I've had that since the age of 3 however I wasn't laying down from being tired, I had to lay down because of dizziness and feeling very scared that I would pass out. I felt like I was spinning. Once I did pass out.
 

bakercape

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teejkay

did you ever find out why? has anything ever helped you especially when you were a kid. I have to push the NMH with the pediatrician. He has never mentioned it just know about it from CFS reading and figured its one explaination.
 

starryeyes

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Hi bakercape,

My parents were afraid I had Epilepsy so when I was 5 I was pulled out of Kindergarten to have my blood tested throughout an entire day. The only thing they found was low-blood sugar, another hallmark symptom of CFS.

My parents were told to allow me to have snacks between meals so they did. I have had IBS since the age of 5 as well and my mom says my poops were good when I was a baby.

I've always been told I just have to live with this.
 
A

anne

Guest
baker, did you see my post above teejay's? There's a doctor named Peter Rowe who does a lot of work on orthostatic intolerance and kids. He, apparently, is very open to having doctors contact him.
 

bakercape

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Anne

I am familiar with NMH. Have been treated for it myself. It helped me a little. I am familiar with Dr. Rowe's work but did not know he would be open to new patients. Thank You. I am going to start pushing my son's pediatrician to look into this. Unfortunately my health insurance has a deductable of a 1000 dollars on testing and like many people with CFIDS I am not in a position to dole out the cash. Ahhhh. Thank you for the Info;)