Re: mitochondrial researchers doing online study

[Guest guest]

Hi Sue

I tried to participate, but the PI told me that they currently have approval to

enroll patients of Dr. Hoang exclusively.

I've been studying mitochondrial diseases recently (since, and because, you

posted that cool aminoglycoside/mtDNA mutation paper), and these do seem to be

highly plausible explanations for the signs/symptoms of many PWCs. PWCs need to

realize that mitochondrial diseases are mainstream, and the list of these

diseases is expanding. It seems to me that there is a fringe aspect to the way

in which mitochondrial diseases are discussed among PWCs, and that this is

unnecessary and somewhat counterproductive.

Dr. Boles is doing some very interesting work, apparently on a shoe-string

budget. His focus on maternal inheritance and sequencing mtDNA is

experimentally savvy, I think. Success in that endeavor should allow expanded

funding for follow-on studies of nuclear DNA mutations that affect mitochondrial

function.

Prednisone can enhance mitochondrial function and is occasionally prescribed to

treat mitochondrial disease. I wonder, now, if that is why I responded so well

to prednisone.

Matt

--- In infections , <rhbailey@...>

wrote:

>

> Hi all,

>

> An L.A. doctor who specializes in mitochondrial disorders is doing a study

> on different variations in mitochrondrial DNA as risk factors in a variety

> of disorders, such as ME/CFS.

>

> This study is being conducted by Drs. Hoang and G. Boles from the

> Division of Medical Genetics at the Children's Hospital there.

> Participation in this study is completely voluntary.

>

> If you go to the website you can read about the four steps for participation

> in Dr. Boles' Chronic Fatigue Syndrome study:

>

> Download and print forms

> Schedule a phone interview

> Complete Online Survey

> Saliva Collection and Return of Signed Forms

>

> It sounds pretty easy. I notice that they don't have many days set aside for

> phone interviews so if you are interested, you should look into it soon.

>

> http://www.childrenshospitalla.org/site/c.ipINKTOAJsG/b.4859127/k.2429/Parti

> cipate_in_Dr_Boles_Research/apps/ka/ct/contactus.asp?c=ipINKTOAJsG & b=4859127

> & en=fwKRK6OVJeIQLcN0JgIRK9NWLsK3LiM8KqIYJhO8JwLfG

>

> Sue ,

> Upstate New York

>

[Guest guest]

I am wary of any DNA sample/study stating this

Your DNA will be stored indefinitely in Dr. Boles’ laboratory, and possibly

in other laboratories. By consenting to this study, you are consenting to allow

DNA samples and cells to be stored and to be available for further research into

finding and understanding disorders of chronic fatigue syndrome, energy

metabolism, and other areas of medical research. (from the mitochondrial study

info page)