Re: More developments on the CFS--autism link

May 14, 2006

< Anyway, there's some good news for Mother's Day! >

Far out, Rich, and Cowabunga and Gadzooks and man alive too! This is

fabulous news. Will you keep us posted about the air time/date and

further developments, please?

Excellent news! And congratulations on your stellar contributions,

as always. I bet you are smiling broadly about this one! Great

news! Thank you.

>

> Hi, all.

>

> I want to pass on some news that might be of interest to you.

>

> As most of you know, for the past few months I have been making a

> lot of noise about the parallels between CFS and autism and about

> how I think that the work that has been done by the autism

> researchers can benefit the CFS community.

>

> Well, a few days ago I was contacted by Laurette Janak, who was one

> of the coauthors with Jill on the paper that showed

> glutathione depletion in autism. This paper also showed that this

> depletion was connected to genetic variations in enzymes that

> resulted in a block in the methylation cycle. Furthermore, it

> showed that using certain supplements could restore the methylation

> cycle and the glutathione level. This paper is what first caught

my

> attention to the connection between CFS and autism.

>

> Laurette had read some of what I had written about this connection,

> and she had also observed that quite a few of the mothers of

> autistic children have CFS, as she does herself. Of course, it is

> very taxing to have an autistic child, and that no doubt

contributes

> to some of the mothers developing CFS, but the other possible

aspect

> here is the genetic one, in view of the fact that genetic

variations

> appear to be behind autism, and I had suspected that they were

> behind CFS as well. And of course, the work announced by the CDC a

> short time ago confirms some genetic variations being associated

> with CFS, though they had only looked at those associated with the

> stress response systems and neurotransmitters.

>

> Well, Laurette had started putting together a chart showing

> parallels between CFS and autism, and she asked me to contribute to

> it. The chart is still growing, and I am amazed at what is coming

> out of this! I really didn't know much about autism before this,

> and Laurette knows a lot, having an adopted autistic child (who

also

> has Down syndrome) as well as having been involved in the research

> on these disorders for quite a while. I have been able to supply

> some information about CFS of which she wasn't aware before this,

> even though she has CFS.

>

> Well, one thing has led to another. Laurette has been able to

> interest Jill in looking at methylation cycle parameters and

> glutathione in some of the autism mothers who have CFS, and they

> have run a few samples. This is just what I had hoped would

> happen! I can't get into the details yet, because the work is

> preliminary, but I can say that it does look very interesting.

> Another interesting development is that Jill is going to look at

> evidence for elevated nitric oxide and peroxynitrite, a la Marty

> Pall's theory for CFS. The autistic kids seem to have elevated NO

> as well. I think some good stuff is going to come out of all this.

>

> The other thing that is in the works is that Laurette was set up to

> be interviewed on Autism One Radio, which is an internet-based

audio

> webcast operation run by autism parents. They are the ones who

> interviewed Prof. Boyd Haley a while back, which (our) Jill has

been

> telling us about lately. The theme of the planned interview was to

> be women's health-related issues of interest to autism mothers.

One

> of the topics was going to be CFS. Well, Laurette talked them into

> including me in the interview. So we've been cooking up the

> questions, and we're supposed to record it sometime this week, and

> it will probably " air " in June.

>

> As you can imagine, all of this has kept me hopping lately,

together

> with a lot of household-related activities, and I haven't been able

> to participate as much in the group as I have in the past.

However,

> I think these autism connections are really going to pay off for

> people with CFS, so I plan to cooperate with these folks as much as

> I can. The more I learn about autism, the more convinced I am that

> the genetics and the biochemistry of CFS and autism have a great

> deal in common. I would say that we are in the middle of what

> Kuhn called a scientific revolution, paradigm shift and

all!

> As a scientist, I'm having a great time with all this! And as

> someone who wants to see people get their health back, I'm very

> hopeful about it all, too.

>

> I'm hoping that one of the things that might come out of this is

> that maybe some of the doctors who currently specialize in autism

> will get interested in treating CFS patients, since they already

> have experience with the autism protocols, and I think they can be

> adapted to CFS. Of course, it might be a big jump to expect them

to

> go from small children to adults, but people is people, so why

not?

> We could certainly use more understanding doctors.

>

> Anyway, there's some good news for Mother's Day!

>

> Rich

>

May 14, 2006

Hi Rich,

This is Awesome . . . we are so proud of you and all you offer. I am so glad

my instincts continue to lead me toward the correct direction with all your

support. I still feel as strong as I did regarding this Autism - CFS connection

as much as I initially did last October when I first joined this group.

I am improving more and more everyday . . . just give me a few more months and

with your help and Dr. Yasko I will be kick'n some butt with my recovery.

Congratulations!!

Sue T

Blake Graham <blanket@...> wrote:

Hi Rich,

That sounds great! I would be interested in seeing the chart when it's done and

commenting on it.

Blake

More developments on the CFS--autism link

Hi, all.

I want to pass on some news that might be of interest to you.

As most of you know, for the past few months I have been making a

lot of noise about the parallels between CFS and autism and about

how I think that the work that has been done by the autism

researchers can benefit the CFS community.

Well, a few days ago I was contacted by Laurette Janak, who was one

of the coauthors with Jill on the paper that showed

glutathione depletion in autism. This paper also showed that this

depletion was connected to genetic variations in enzymes that

resulted in a block in the methylation cycle. Furthermore, it

showed that using certain supplements could restore the methylation

cycle and the glutathione level. This paper is what first caught my

attention to the connection between CFS and autism.

May 15, 2006

Hi, Sue.

That sounds good to me! You go, girl!

Rich

> I am improving more and more everyday . . . just give me a few

more months and with your help and Dr. Yasko I will be kick'n some

butt with my recovery.

>

> Congratulations!!

> Sue T

May 15, 2006

Hi Rich and all,

This all sounds so exciting, and really promising. As opposed to the cynicism I

view some entities and announcements with....I am extremely heartened these days

by the field of Brain , Neurogenesis, healing the " terrain " , and that great

minds are coordinating their findings more. It will be fascinating to see what

comes of your new alliances!

It seems that Brain Science,as much as anything is escalating, both in the

Mainstream, and Wholistic realms. At least among some, with more synergism.

Hope that made sense.

I have a couple of comments and questions. Please excuse if they've been

addressed. I have not been able to follow the Autism threads, DAN program, etc.

(OR read any books, darn it!) But not for lack of interest, cause I have lots in

the autism link. Just massively overloaded and many directions..

1st, I wondered if you've seen reports from the Aviemore Brain Phospholipid

Conference with many Brain experts, (some known in ME/CFS world) definitely

including Autism.

OR, anything from another Autism Conference in the last few months...I forgot

where...the US, maybe South/Southwest?? I was really wanting to know about them.

Especially with this collaborating that's happening...at least in terms of the

mix of presenters.

{Yikes, now I'm thinking maybe you attended one and reported on it}.

I first heard of suspected connections of CFS/Autism at an International CFS

Conference in SF. in 96. Dr. Goldberg? was very excited about it. I think his

wife had CFS and maybe a child ,autism...or he was a Pediatrician, or something?

From So. California.

He was very angry, because he knew a CFS ACtivist, who had just taken her

life...Joan Irvine, who is also known as someone who received a letter from Wm

Reeves advising against giving blood. (AS he publicly repeated that this is not

an infectious disease) {See Joan Irvine, Blood Letters}

But I do digress. I just know that sort of thing can really stir the passions.

I think that's the 1st place I heard that often CFS persons have one autistic

child and one with ADD. I'll be darned if I did not then meet several who were

exactly that combo! Just randomly, like a friend of the lab tech who took my

blood!

I think he then went on to be part of a whole family network of people with

these combos Their name was something like ? I have assumed those folks may

be involved in some of what you've discussed. They were especially working with

diets and supplements.

But I lost track of them.

Years ago, with a series of rough events, I ended up always going to the corner

of my couch (sitting) for months, with pillows and covered up, and my friend

said I looked like a trauma surviver. But I " reminded " myself of an autistic

kid. Sound, touch, movement, very painful, ,and meltdown easily.

Other times, maybe aphasia, or just kind of in a " trance " .

During that time, I had a renewed awareness of what would calm, center me.

Quiet, low lights, stillness...and I began to really use music...especially " New

Age " . I heard somewhere and it felt like it actually mechanically balanced my

brain. Or, I would just stare at a trees, which did the same thing.

Yet other times, I could go to a loud colorful event, movie, etc. which helped

in a different way.

I looked up Autism, and found some interesting sites, including by adult

" Autistics " . Some told of their childhood, and even why they banged on things or

yelled at the time.

ANother had invented a chair that kind of " hugged " the person sitting in it.

That reminded me of the corner of my couch!

Then one time, I " met " a young woman on my Dystonia list, who also was autistic.

She had a caregiver, and many things she was facing, but was in college!

Obviously, there are different levels of functioning, and at different times.

SHE turned me on to other websites...I learned whole other angles on the Autism

spectrum. 1st, she insisted I use " Autistic " as noun..she is an

Autistic...opposite of what Disability Advocates tell us.

There were whole sites of, I guess you would say, empowered Autistics! They had

ranged from quite severe as children to less so. But their view was that they do

not need " fixing " /Curing lol. They had this totally hilarious parody of

" normals " , the poor things, who think there are rigid rules of behavior in

public. " They just can't help themselves " .

ANyway, this was really interesting. We corresponded for awhile and I asked her

some questions. For instance , she totally related to the music thing, and it

had the same effect. And here, I was worrying about the trance/staring thing,

and she said, oh I do that all the time! Just go with it. So, I do...sometimes.

When I do, I then am the most relaxed and able to function and think much

better.

She also needed the stimuli other times.

We kind of discuss some of this in CFS circles, as far as the sensory overload.

I did not discuss these experiences I was having with and about Autistics much

at the time, because it was not a common topic, and I thought some might think

I'd lost my marbles. I remember trying to explain it to my Father lol...Once.

I've kind of shortened this and hope it is making sense. It is very different

from the Science you are looking at. But since Autism is a growing topic, I

thought some of this might be of interest to you and others.

I'm sure there are many more multiple angles on Autism these days, far beyond

anything I know..but I really learned alot, and about healing, and food for

thought, during that time. That I encounter or use every day.

Take care,

Katrina

>