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Dr. Judy Mikovits IACFS/ME Newsletter Apr 2010 Q & A

JillBohr

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Hi Jill,

Quite so, quite so - and the late great Kubrick is one of the greatest directors of all time (so far).

O, BTW: How does the dr. Mikovits' news rhyme with your knowledge of autism and its possible causes? (I ask because I'm interested and know virtually nothing about this.)

Best wishes,

Maarten.
Loooooovvvve Kubrick films! Regarding the autism connection, I have been researching autism since my oldest son was diagnosed (he was born in 1998 (in the Netherland btw)). Anyhow, I observed that there were a lot of papers published regarding autism and autoimmune disorders. Many children with autism have a history of autoimmune diseases in the family. That particulary tweeked my interest because my kids have an aunt with ME/CFS (their father's side), I have aunt with ME/CFS and my father's aunt has fibromylagia and ME/CFS. We also have diabetes on both my children's father side and my side (they are thin btw) and my ex-husband had a cousin die of MS several years ago. My uncle's wife also died of MS two years ago as well (not blood related but I just thought I would add that in there). Anyway, I have been following the NIDS plan (I do not know if you have heard of Dr. Goldberg out of Los Angeles) for a quite a few years now. He observed that his wife with ME/CFS and the child patients with ASD have very similar immune panels. When the news broke out on XMRV, many of us parents jumped out of our seats. WPI has did a very small study on children with autism that have ME/CFS mothers and the rate of XMRV positive was 57% for ASD children.

If you have time, check out the video on Dr. Michael Goldberg's presentation.

http://www.youtube.com/watch?v=BauaBoDHHyI&feature=related
 

MEKoan

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Hey Everyone,

What a privilege it is to be able to have such informed and intelligent conversations about these developments! I am particularly grateful for the presence of those with kids on the spectrum and/or knowledge about autism as I believe/hope that this is also a breakthrough for that tragic condition. I do not think it's a coincidence that so many of us have kids on the spectrum or that, seemingly, the rates of both ME/CFS and Autism have risen so dramatically in concert.

I was a Child Care Worker in my first career, the one I had just before getting sick. For a while, I worked with a little boy with autism who was sent to school each day caked in feces and the first thing I would do was wash him. Saliva was not the only bodily "fluid" mentioned by Dr Mikovits. For me, this is interesting but far from the only mode of transmission I suspect. I was born in a hospital 1 month to the day following an outbreak among the nursing students; I worked in the schools for years; I had a brief affair with a man who later died of very aggressive prostate cancer; I moved in with a cat just weeks before getting ill; I suspect my paternal aunt, who died of cancer, had ME/CFS and my father died of very aggressive prostate cancer - approx. a mo. from diagnosis to death. Should XMRV prove to be our HIV, I could have gotten it any of these ways or in some other way which I will never know.

I do know that, touch wood, I do not seem to have given it to anyone with whom I have been intimately involved. I know people who are HIV pos. and their partners remain HIV neg. No virus is always transmitted by a known route unless it's a vaccination. There is always an element of luck involved. We don't know anything yet.

Thanks again, everyone for being so smart and writing so well! When I was computerless I discovered that the whole world is not hanging on this the way we are. As others have commented, it has been under the radar of most people thus far. We are so lucky to have this community to process this with! I'm not afraid of being shunned. I have you guys.

Peace out,
Koan
 

Kati

Patient in training
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This is very interesting questioning. Maybe we all need to live on the same island until the scientists figure us out!!!

I wonder if our professions (nursing, teachers) will change the way we care and the way we teaches people with conditions like CFS, prostate cancer, and autism amongst other things. Wearing mask, gown and goggles may be a good protection for us nursing while doing direct care to these patients. (I was thinking of letting my manager know, but I think it's too early, they'd probably think I'm crazy)

Perhaps scientist will be able to find out who is at risk to develop XMRV, and what to do about it. In the meantime it is prudent for us to reduce exposure to people who haven't been exposed to us- e.g new sexual partners, and with friends, being careful about where your saliva is going when you talk.

We still don't know enough, and I hope that by now we got at least some government worried and ready to loosen the purse ties. Write them letters!
 

Dreambirdie

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I was born in a hospital 1 month to the day following an outbreak among the nursing students; I worked in the schools for years; I had a brief affair with a man who later died of very aggressive prostate cancer; I moved in with a cat just weeks before getting ill; I suspect my paternal aunt, who died of cancer, had ME/CFS and my father died of very aggressive prostate cancer - approx. a mo. from diagnosis to death. Should XMRV prove to be our HIV, I could have gotten it any of these ways or in some other way which I will never know.
Hey Koan--What's the part about the *cat* have to do with getting ill, or with XMRV? Have I missed something here?

When I was computerless I discovered that the whole world is not hanging on this the way we are. As others have commented, it has been under the radar of most people thus far. We are so lucky to have this community to process this with! I'm not afraid of being shunned. I have you guys.
Yup, I have felt a whole lotta validation from being on this forum. What a difference that has made. After decades of plodding through this illness alone on foot, surrounded by normies, I feel that I have finally found my tribe. What a relief to be in the company of my familiars.

 
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No one has mentioned a vaccine will likely come soon. Can you imagine the validation of doctors giving everyone a vaccine so they don't get ill from CFS? And can you imagine the money to be made off of this? Which company is working on a vaccine? I need to buy some stock.

So, when an announcement is made that this is transmitted through saliva, it will be fear. If we have been public, we will be feared. But I think I can handle it. I am a news reporter. I am accustomed to striking fear in people just by walking up to them. Teasing my husband, "Don't cross me, I'll spit on you." (of course, if it is transmittable through saliva, I am sure he already has it.)

Anyway, but the fear will be relieved when a vaccine is available. I was watching the polio story not long ago, a documentary. Looks like it may play out similar for us.

I agree that there is some evidence for autism and cfs connection.

Also, might the body fluids issue explain why teachers and nurses seem to be at higher rate to get CFS?

Oh my, I just love to see jig saw puzzle pieces fall right into place.

Tina
 

serenity

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i worry about public reaction too, as does my husband. i knew right from the start when i heard about XMRV it meant - we go from they dont' believe us to they fear us. frankly, that is fine. as long as they don't do anything to horrible to me. people have not been kind to me, & i really can't see what they can do to me that they already haven't done. shun me? that's already happened.
 

gracenote

All shall be well . . .
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jspotila:
Does anyone know why (whether) this attachment was pulled from the IACFS/ME website? I'm a little concerned about that.
You can find the PDF here, although I don't know how to access it directly from the IACFS website.

http://www.iacfsme.org/Portals/0/pdf/IACFS-Attachment4-April2010.pdf

When I tried to backtrack from this web address, I got the following warning (it makes me wonder if the original post to CoCure was from someone who had access):

403 - Forbidden: Access is denied.
You do not have permission to view this directory or page using the credentials that you supplied.
The PDF is available at WPI's website at:

In The News
April 21, 2010: IACFS Q&A
View document [PDF]

http://www.wpinstitute.org/news/news_current.html

I don't think this answers your question, though, jspotila.
 

serenity

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"What a privilege it is to be able to have such informed and intelligent conversations about these developments!"

i echo Koan's sentiments, it is so great to have found a site where everyone is so informed & i can learn to much!
 

MEKoan

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jspotila,

My automatic assumption is that the link is from the members newsletter and passed on by a member of IACFS. Non members can access newsletters only up to April 2009, fyi.

I'm thinking: no big whoop.

Peace out,
Koan
 

Dreambirdie

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MEKoan

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DB,

A rider imbed. Mired ire - bad! Bade ride rim. Abide mid err. (That would be a cute trick!) Bared mid ire!

ETA I must admit he lost me with: Chinesely Roomely speakingly. But, I'm thinking it might have something to do with this



No offense intended to anyone!