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sleeper692

Gwi Study Still Seeking Participants

Question

I just got back yesterday from a trip to Atlanta to participate in a DOD sponsored study being done by Dr. John Shoffner at Medical Nurogenetics. They are still looking for another 20 or so study participants. Dr. Shoffner is particularly looking for GWV's that have joint and muscle pain along with the other typically associated symptoms.

Dr. Schoffner is genuinely interested in finding a cause and treatment for GWI. He is using skin and blood samples, looking for genetic markers, mitochondrial damage and I'm sure a whole bunch of other advanced medical stuff that deals with DNA and cellular functions that is light years over my head. I got to spend about 30 minutes with the man and I was very impressed. He is thoroughly versed in GWI (and the ways of the VA) and has been the first doctor that I've ever spoken to that was willing and able to address the myriad of questions and concerns I had. He is already uncovered some distinct findings and is more than willing to share that information with my medical care team. He gave me a handful of cards and urged me to have all my doctors call him as he can give them information that would help them identify and treat some of the things that are going on with me. It was worth the entire trip just to talk to him!

If you are interested in participating, all you have to do is call Emily Voigt (info below), a nurse at the clinic. She'll email (or mail) forms for you to send to the VA to release your medical records as well as a consent form to send back to them. Once they review your medical records and determine that you show the symptoms of GWI, Emily will contact you to set up a date for you to travel to Atlanta from wherever you are in the U.S. It took a couple of months from the time I applied to my actual visit. They pay for the flight, super nice taxi to/from the airport, hotel and a $100 Visa card (which they give you when you check into the hotel). Note: They will only put you up in a hotel if they can't fly you in and out in the same day. I flew in from the west coast and there was no way they could schedule me for one day so I got lucky. If I had the foresight, I would have asked for my flight home a couple of days later so I could have stayed and played tourist.

The clinic staff is really great and made the entire experience quite pleasant. You'll get to interview with Dr. Shoffner for about 30 minutes then they take you into another room where they draw some blood and take two tiny pieces of skin from your arm to culture and study. In and out in less than two hours and it was all quite painless.

Just in case you're wondering, it is cheaper for them to pay for your trip there and back than it would be for them to pay a physician to gather and ship the samples. Plus, they would freeze the skin samples for shipment and they want the samples "fresh." Besides, you wouldn't get to talk with Dr. Shoffner and that would be a huge missed opportunity to talk with a doctor that actually understands our illness.

If you have the time and like to travel, I strongly urge you to contact Emily at the clinic and volunteer to participate. These are the good guys and they are truly trying to help us with what Dr. Shoffner says will be a study with major impact on the diagnosis and treatment of GWV's.

Contact info:

Emily Voigt, RN, BSN

678-225-0222

evoigt@mnglab.com

Here is the an excerpt of the text from the letter they sent me about the study:

RE: Study Recruitment Material

Title: Mechanisms of Mitochondrial Dysfunction in Gulf War Syndrome

Funding: DOD, GW080138

Principal Investigator: John Shoffner, M.D.

Study Rationale:

Gulf War syndrome (GWS) is associated with increased incidences of amyotrophic lateral sclerosis, pain syndromes, muscle

complaints that include fatigue and myalgias, as well as other neurological symptoms. Approximately 100,000 individuals of the

700,000 veterans deployed in the 1990-1991 Gulf War have medical complaints consistent with GWS. Clinical manifestations are

similar to those identified in Chronic Fatigue Syndrome (CFS). Abnormalities in the part of the cell known as mitochondria have

been delineated in GWS and CFS. We propose that GWS is determined by a complex interaction of variables that impair

mitochondrial function that include genetic susceptibility, pre-Gulf War exposures, Gulf War associated exposures, and aging. This

study will be the first comprehensive investigation of mitochondrial function in GWS. Our objective is to establish the cause for

symptoms in affected veterans, develop testing that can more easily identify GWS, and ultimately develop treatment protocols for

GWS.

The mitochondria have many functions that include changing the foods we eat into a usable form of energy known as ATP

(adenosine triphosphate). All the cells of our body use this energy to run the biochemical reactions that allow our cells to function

properly. Hence, the mitochondria act as tiny power plants inside of every cell. These power plants also utilize about 95% of the

oxygen that we breathe. When the energy (ATP) is produced at normal levels, the cells function normally. When the energy (ATP)

is reduced, the cells develop a variety of problems (analogous to a city during a brown out where energy dependent functions begin

to fail). The central nervous system and muscle are often affected. These diseases can have their onset at any age and can even be

triggered by exposure to certain chemicals and drug exposures. Multiple lines of evidence from the literature and from patients

studied in our laboratory suggest that the mitochondria are not functioning properly in GWS and in CFS. Hence, detailed

investigation of mitochondrial dysfunction in GWS is a priority.

Over the last two decades, our group has been dedicated to working with patients with mitochondrial defects. Over the years, we

described many inherited mutations and biochemical defects that impair mitochondrial function. Our proposal is unique in that we

integrate a variety of specialized laboratory techniques that characterize mitochondrial function into a comprehensive investigation.

Our proposal is designed to characterize mitochondrial function in 50 veterans with GWS using blood and skin cells. We will be

investigating the skin and blood cells by characterizing precisely how mitochondria are working through detailed investigation of

mitochondrial enzyme function, of mitochondria within living cells, of mitochondrial proteins, and of mitochondrial genes.

Participation in the study will take approximately 1.5-2.0 hours of your time. The procedures performed during this

visit are a clinical evaluation by Dr. Shoffner, drawing blood, and a small skin biopsy from the arm. Once again the

consent form discusses the study and the procedures in detail. Dr. Shoffner will answer your questions about the

study.

If you are interested in participation, please call us at 678-225-0222

Edited by sleeper692

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This is really great the Dr is willing to talk to the VA Dr's about this. Sounds like he's really dedicated to his work and helping Veterans as well. To bad the VA couldn't assign him a temporary contract to educate their Dr's on GWI.

Your post reminds me about the hard time I had years ago just to find a Dr that knew anything about Hemochromatosis I had and how to treat it. But I won't go into that cause it's a long saga, besides I would feel like I'm hyjacking your post.

This study by DR Shoffner sounds very interesting. If I were in your shoes, I really think I would of did what you did by going and talking to him. I could shake your hand for caring enough to participate. I surely hope his studies turns out real promising to the veterans suffering from this.

Coot

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This sounds very interesting. I wonder if he works with Dr. Hadley from the links below with the brain/MRI work in anyway - I believe it is all related.

I'll talk with my husband and see if he could feel up to the trip to participate in the study. He is very tired and sleep most of the day, but I think it would be very good for him to talk with a Dr that understands more about GWI, his current Dr's are supportive - but just don't know how to help him.

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This does sound very good . I tried calling twice yesterday and all i got was an answering machine . Will see how it goes .

Sgt Sandman

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Hey Sgt Sandman,

If you don't get a return call on Monday, I would send an email to Emily (evoigt@mnglab.com). She's a busy lady but she's pretty good about responding to emails.

Pete

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Hey sleeper692 My son went to ATL to see Dr S and my son was DX with Mito compleex 1 and 3 and he said in his report that it came from the father and mother. My wife made a call to see if they would want me to do the study. I wil let you know if i go.

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