Guest guest Posted July 2, 2008 Report Share Posted July 2, 2008 Hi everyone! I had my phone consult with Dr. Goldberg yesterday and he asked me to write an email to all about the possibility of forming a new parent board to help with his efforts. He needs us to form one and would like to know who would be interested in participating. We could all have a conference call about it soon as possible should anyone be interested. Please respond to the nids site with your thoughts. Thanks, Gayle Blue Lips Our daugther has very blue lips every morning after breakfast. Seems fine, no seizure or holding her breath. It has been going on for the past 6 months at least intermittently but we seem to be seeing it increasingly often and it is lasting for longer periods of time. Any thoughts?? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2008 Report Share Posted July 2, 2008 What exactly would being on the parent board consist of? I may be interested in participating. I am not very good at catching the online chats though. Thanks- From: gvizjazz@... <gvizjazz@...> Subject: Re: Parent Board Date: Wednesday, July 2, 2008, 9:55 AM Hi everyone! I had my phone consult with Dr. Goldberg yesterday and he asked me to write an email to all about the possibility of forming a new parent board to help with his efforts. He needs us to form one and would like to know who would be interested in participating. We could all have a conference call about it soon as possible should anyone be interested. Please respond to the nids site with your thoughts. Thanks, Gayle Blue Lips Our daugther has very blue lips every morning after breakfast. Seems fine, no seizure or holding her breath. It has been going on for the past 6 months at least intermittently but we seem to be seeing it increasingly often and it is lasting for longer periods of time. Any thoughts?? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2008 Report Share Posted July 2, 2008 I would probably be interested but would need to know more - can you provide any more details ? Thanks, Rhonda gvizjazz@... wrote: > > Hi everyone! I had my phone consult with Dr. Goldberg yesterday and he > asked me to write an email to all about the possibility of forming a > new parent board to help with his efforts. He needs us to form one and > would like to know who would be interested in participating. We could > all have a conference call about it soon as possible should anyone be > interested. Please respond to the nids site with your thoughts. > Thanks, Gayle > > Blue Lips > > Our daugther has very blue lips every morning after breakfast. Seems > fine, no seizure or holding her breath. It has been going on for the > past 6 months at least intermittently but we seem to be seeing it > increasingly often and it is lasting for longer periods of time. > > Any thoughts?? > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2008 Report Share Posted July 2, 2008 Hello to all-thankyou to those who are responding to Dr. Goldberg's request for a new parent board! I have just spoken with someone who can help us set up a group conference call in order for Dr. Goldberg to discuss his plans for the board. I look forward to being involved and hope this new parent board will be successful! Gayle Blue Lips Our daugther has very blue lips every morning after breakfast. Seems fine, no seizure or holding her breath. It has been going on for the past 6 months at least intermittently but we seem to be seeing it increasingly often and it is lasting for longer periods of time. Any thoughts?? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2008 Report Share Posted July 2, 2008 Hello. You can count me in. Please let me know the details. Thanks. Lynn From: gvizjazz@... <gvizjazz@...> Subject: Re: Parent Board Date: Wednesday, July 2, 2008, 10:55 AM Hi everyone! I had my phone consult with Dr. Goldberg yesterday and he asked me to write an email to all about the possibility of forming a new parent board to help with his efforts. He needs us to form one and would like to know who would be interested in participating. We could all have a conference call about it soon as possible should anyone be interested. Please respond to the nids site with your thoughts. Thanks, Gayle Blue Lips Our daugther has very blue lips every morning after breakfast. Seems fine, no seizure or holding her breath. It has been going on for the past 6 months at least intermittently but we seem to be seeing it increasingly often and it is lasting for longer periods of time. Any thoughts?? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2008 Report Share Posted July 2, 2008 I am potentially interested as well. I would be interested in knowing what the parent responsibilities would consist of. Coincidentally, I was just wondering this morning what parents could do to support his efforts to start trials on immune modulators. Curtis and Hackler wrote: > What exactly would being on the parent board consist of? I may be > interested in participating. I am not very good at catching the > online chats though. > > Thanks- > > > > > From: gvizjazz@... <mailto:gvizjazz%40aol.com> <gvizjazz@... > <mailto:gvizjazz%40aol.com>> > Subject: Re: Parent Board > <mailto:%40> > Date: Wednesday, July 2, 2008, 9:55 AM > > Hi everyone! I had my phone consult with Dr. Goldberg yesterday and he > asked me to write an email to all about the possibility of forming a > new parent board to help with his efforts. He needs us to form one and > would like to know who would be interested in participating. We could > all have a conference call about it soon as possible should anyone be > interested. Please respond to the nids site with your thoughts. > Thanks, Gayle > > Blue Lips > > Our daugther has very blue lips every morning after breakfast. Seems > fine, no seizure or holding her breath. It has been going on for the > past 6 months at least intermittently but we seem to be seeing it > increasingly often and it is lasting for longer periods of time. > > Any thoughts?? > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2008 Report Share Posted July 2, 2008 My boys will be new patients of Dr. G's in about 8 weeks. I would be interested in participating Cherie > > From: gvizjazzaol (DOT) com <mailto:gvizjazz% 40aol.com> <gvizjazzaol (DOT) com > <mailto:gvizjazz% 40aol.com> > > Subject: Re: Parent Board > groups (DOT) com <mailto:% 40groups. com> > Date: Wednesday, July 2, 2008, 9:55 AM > > Hi everyone! I had my phone consult with Dr. Goldberg yesterday and he > asked me to write an email to all about the possibility of forming a > new parent board to help with his efforts. He needs us to form one and > would like to know who would be interested in participating. We could > all have a conference call about it soon as possible should anyone be > interested. Please respond to the nids site with your thoughts. > Thanks, Gayle > > Blue Lips > > Our daugther has very blue lips every morning after breakfast. Seems > fine, no seizure or holding her breath. It has been going on for the > past 6 months at least intermittently but we seem to be seeing it > increasingly often and it is lasting for longer periods of time. > > Any thoughts?? > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2008 Report Share Posted July 2, 2008 Hi,? I am also very interested in helping to get the word out.? Dr.Goldberg is also aware of my interest so please include me as well.? Blue Lips Our daugther has very blue lips every morning after breakfast. Seems fine, no seizure or holding her breath. It has been going on for the past 6 months at least intermittently but we seem to be seeing it increasingly often and it is lasting for longer periods of time. Any thoughts?? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2008 Report Share Posted July 2, 2008 I am interested but as with all of us my time and travel is limited. Will this be a virtual board? My editorial and publishing experience may help!bill > From: gvizjazz@... <gvizjazz@...> > Subject: Re: Parent Board > > Date: Wednesday, July 2, 2008, 10:55 AM > Hi everyone! I had my phone consult with Dr. Goldberg > yesterday and he asked me to write an email to all about > the possibility of forming a new parent board to help with > his efforts. He needs us to form one and would like to know > who would be interested in participating. We could all have > a conference call about it soon as possible should anyone > be interested. Please respond to the nids site with your > thoughts. Thanks, Gayle > > > Blue Lips > > > > > > > Our daugther has very blue lips every morning after > breakfast. Seems > fine, no seizure or holding her breath. It has been going > on for the > past 6 months at least intermittently but we seem to be > seeing it > increasingly often and it is lasting for longer periods of > time. > > Any thoughts?? > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2008 Report Share Posted July 2, 2008 Hi My son sees Dr at the NNY Autism Center following the protocol. I am interested in being a part of the Parent Board. Vicki Eisen From: gvizjazz@... <gvizjazz@...> Subject: Re: Parent Board Date: Wednesday, July 2, 2008, 10:55 AM Hi everyone! I had my phone consult with Dr. Goldberg yesterday and he asked me to write an email to all about the possibility of forming a new parent board to help with his efforts. He needs us to form one and would like to know who would be interested in participating. We could all have a conference call about it soon as possible should anyone be interested. Please respond to the nids site with your thoughts. Thanks, Gayle Blue Lips Our daugther has very blue lips every morning after breakfast. Seems fine, no seizure or holding her breath. It has been going on for the past 6 months at least intermittently but we seem to be seeing it increasingly often and it is lasting for longer periods of time. Any thoughts?? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2008 Report Share Posted July 3, 2008 Gayle, I'd definitely be interested, if you're still looking for people. Alaine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2008 Report Share Posted July 3, 2008 I would be willing to help out in any way possible too. > > Gayle, > > I'd definitely be interested, if you're still looking for people. > > Alaine > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2008 Report Share Posted July 3, 2008 My son has been with Dr. Goldberg for 10 years now and I would love to be part of things.? Let me know what I can do. ?Thanks, ? Judy Blue Lips Our daugther has very blue lips every morning after breakfast. Seems fine, no seizure or holding her breath. It has been going on for the past 6 months at least intermittently but we seem to be seeing it increasingly often and it is lasting for longer periods of time. Any thoughts?? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 4, 2008 Report Share Posted July 4, 2008 I have two boys in treatment with Dr. G and my husband and I would be interested in participating in the parents board. Robyn > > Hi everyone! I had my phone consult with Dr. Goldberg yesterday and he asked me to write an email to all about the possibility of forming a new parent board to help with his efforts. He needs us to form one and would like to know who would be interested in participating. We could all have a conference call about it soon as possible should anyone be interested. Please respond to the nids site with your thoughts. Thanks, Gayle > > > Blue Lips > > > > > > > Our daugther has very blue lips every morning after breakfast. Seems > fine, no seizure or holding her breath. It has been going on for the > past 6 months at least intermittently but we seem to be seeing it > increasingly often and it is lasting for longer periods of time. > > Any thoughts?? > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2008 Report Share Posted July 5, 2008 Hi everyone! Thankyou so much for the great letter of support Doris! I'm sure trying, along with Rob to get the board going at Dr. Goldberg's request! We need all the support from as many parents as possible! We would welcome any ideas and suggestions! Rob is going to look into setting up an 800 number for all of us to call as an initial conference. Dr. Goldberg would be on it as well and we just need to set a day and time that's convenient for everyone. Dr. Goldberg had mentioned Wednesday evenings would be good for him. I will touch base with Rob and we can go from there. Thankyou to all who are interested! Gayle HHV6- from the Balto MD conf. Sharryl Hemry may be able to comment on this conference since I think she attended?? BALTIMORE, MD, Jun 23 (MARKET WIRE) -- A study suggests that a " smoldering " central nervous system (CNS) infection may play a role in conditions that plague millions of Americans. Kazuhiro Kondo, MD, PhD, of the Jikei University Medical School in Tokyo identified a novel human herpesvirus-6 (HHV-6) protein present in Chronic Fatigue Syndrome (CFS) patients but not healthy controls that may contribute to psychological symptoms often associated with that and other disorders. " Causes of many chronic diseases are unknown and chronic viral infection is one of the most suspected candidates, " said Dr. Kondo, who spent 20 years trying to identify the latent protein responsible for chronic CNS disease and mood disorders. Support for Dr. Kondo's claim came from Stanford University's Montoya who announced at the same conference that the antiviral drug Valcyte, shown to be effective against HHV-6, resulted in an improvement in the cognitive functioning of CFS patients, although not a complete resolution of their fatigue. According to Dr. Kondo, drugs like Valcyte combat active replication but can't completely control low-level smoldering. " To cure the diseases, we have to reduce the latently infected virus or prevent its reactivation, " he explains. A Debilitating Disorder Chronic Fatigue Syndrome is a debilitating disorder affecting one to four million Americans and causing 25 billion dollars a year in economic losses. The primary symptoms include post-exertional malaise, fatigue, difficulty concentrating, unrefreshing sleep, muscle and joint pain. High rates of depression co-occur with the disease. Mostly striking, in working-age adults, the disease is often triggered by a flu-like episode. Efforts to find a single pathogen responsible for the disease have, however, failed and the cause of the disorder is unknown. Novel Herpesvirus Protein is Associated with Altered Nervous System Cell Activity and Chronic Fatigue Syndrome and Depression Kondo identified a novel HHV-6 protein associated with latent (non-replicating) HHV-6-infected nervous system and immune cells. Transfecting this new protein, called SITH-1 (Small Intermediate Stage Transcript of HHV-6), into nervous system cells called glial cells, resulted in greatly increased intracellular calcium levels. Increased intracellular calcium levels are believed to play an important role in psychological disorders and can contribute to cell death. Expressing the SITH protein though the use of an adenoviral vector in mouse resulted in manic-like behavior. A serological study indicated that 71% of CFS patients with psychological symptoms and none of the health controls possessed the antibody against the SITH-1 protein (p < .0001). Further tests indicated that 53% of depression and 76% of bipolar depression patients possessed the antibody. Traditional Viral Tests May Overlook Important Disease Causing Processes Researchers have suspected that central nervous system infections could contribute to psychological and central nervous system disorders, and patients with CFS have a much higher than average rate of depression. This virus spreads cell-to-cell instead of releasing viral particles into the bloodstream. This has hampered efforts to demonstrate that the virus plays a role in CNS disease. " This virus persists in the brain and other tissues, but not the blood, which is where investigators have looked, " says Loomis, Executive Director of the HHV-6 Foundation. " Indeed, standard serum PCR DNA for direct evidence of the virus are useless, " she added. New ultra-sensitive assays are under development, she reports, " but currently the best way to identify patients with smoldering HHV-6 infection is to look for elevated IgG antibody titers. " Dharam Ablashi, the co-discoverer of the HHV-6 virus, and the HHV-6 Foundation's Scientific Director warns that the test won't be available in the near future. " It may take years to get the assay validated and into commercial production, but will be worth the wait. This assay could identify large numbers of patients with CNS dysfunction who could benefit from antiviral treatment. The HHV-6 Foundation is working hard to help scientists like Dr. Kondo develop better assays, " says Ablashi. The HHV-6 Foundation The HHV-6 Foundation encourages scientific exchanges and provides grants to researchers seeking to increase our understanding of HHV-6 infection in a wide array of central nervous system disorders. Contact: Loomis Executive Director HHV-6 Foundation Phone: 805-969-1174 www.hhv-6foundation.org/ <http://www.hhv-6foundation.org/> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2008 Report Share Posted July 6, 2008 I'd love to be a part of the parent group! I know of 2 other families in this area who would also be interested. Both are with Dr. Goldberg. Our speech therapist and close friend, Kay Mathews, would also probably be interested. She's made every trip to see Dr. G with us and was instrumental in bringing Dr. G to Tupelo in 2004 and getting the word out there through the use of the DVD that was made during the Tupelo conference. Just let us know what we can do. Shona > > > > Gayle, > > > > I'd definitely be interested, if you're still looking for people. > > > > Alaine > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2008 Report Share Posted July 6, 2008 Hi Gayle, Wednesday evenings would work for me but (just a thought) they may not work for many... several of my friends attend church on Wednesday evenings. Personally, I would vote for Tuesday evenings but will make whatever night you choose work for me. Thank you SO much for your efforts on making this happen! ~Rhonda www.RhondaSpellman.com gvizjazz@... wrote: > > Hi everyone! Thankyou so much for the great letter of support Doris! > I'm sure trying, along with Rob to get the board going at Dr. > Goldberg's request! We need all the support from as many parents as > possible! We would welcome any ideas and suggestions! Rob is going to > look into setting up an 800 number for all of us to call as an initial > conference. Dr. Goldberg would be on it as well and we just need to > set a day and time that's convenient for everyone. Dr. Goldberg had > mentioned Wednesday evenings would be good for him. I will touch base > with Rob and we can go from there. Thankyou to all who are interested! > Gayle > > HHV6- from the Balto MD conf. > > Sharryl Hemry may be able to comment on this conference > since I think she attended?? > > BALTIMORE, MD, Jun 23 (MARKET WIRE) -- > A study suggests that a " smoldering " central nervous system (CNS) > infection may play a role in conditions that plague millions of > Americans. Kazuhiro Kondo, MD, PhD, of the Jikei University Medical > School in Tokyo identified a novel human herpesvirus-6 (HHV-6) protein > present in Chronic Fatigue Syndrome (CFS) patients but not healthy > controls that may contribute to psychological symptoms often associated > with that and other disorders. > > " Causes of many chronic diseases are unknown and chronic viral infection > is one of the most suspected candidates, " said Dr. Kondo, who spent 20 > years trying to identify the latent protein responsible for chronic CNS > disease and mood disorders. > > Support for Dr. Kondo's claim came from Stanford University's Montoya > who announced at the same conference that the antiviral drug Valcyte, > shown to be effective against HHV-6, resulted in an improvement in the > cognitive functioning of CFS patients, although not a complete resolution > of their fatigue. According to Dr. Kondo, drugs like Valcyte combat active > replication but can't completely control low-level smoldering. " To cure > the diseases, we have to reduce the latently infected virus or prevent its > reactivation, " he explains. > > A Debilitating Disorder > > Chronic Fatigue Syndrome is a debilitating disorder affecting one to four > million Americans and causing 25 billion dollars a year in economic > losses. The primary symptoms include post-exertional malaise, fatigue, > difficulty concentrating, unrefreshing sleep, muscle and joint pain. High > rates of depression co-occur with the disease. > > Mostly striking, in working-age adults, the disease is often triggered by > a flu-like episode. Efforts to find a single pathogen responsible for the > disease have, however, failed and the cause of the disorder is unknown. > > Novel Herpesvirus Protein is Associated with Altered Nervous System Cell > Activity and Chronic Fatigue Syndrome and Depression > > Kondo identified a novel HHV-6 protein associated with latent > (non-replicating) HHV-6-infected nervous system and immune cells. > Transfecting this new protein, called SITH-1 (Small Intermediate Stage > Transcript of HHV-6), into nervous system cells called glial cells, > resulted in greatly increased intracellular calcium levels. Increased > intracellular calcium levels are believed to play an important role in > psychological disorders and can contribute to cell death. Expressing the > SITH protein though the use of an adenoviral vector in mouse resulted in > manic-like behavior. > > A serological study indicated that 71% of CFS patients with psychological > symptoms and none of the health controls possessed the antibody against > the SITH-1 protein (p < .0001). Further tests indicated that 53% of > depression and 76% of bipolar depression patients possessed the antibody. > > Traditional Viral Tests May Overlook Important Disease Causing Processes > > Researchers have suspected that central nervous system infections could > contribute to psychological and central nervous system disorders, and > patients with CFS have a much higher than average rate of depression. This > virus spreads cell-to-cell instead of releasing viral particles into the > bloodstream. This has hampered efforts to demonstrate that the virus plays > a role in CNS disease. " This virus persists in the brain and other > tissues, but not the blood, which is where investigators have looked, " > says Loomis, Executive Director of the HHV-6 Foundation. " Indeed, > standard serum PCR DNA for direct evidence of the virus are useless, " she > added. New ultra-sensitive assays are under development, she reports, " but > currently the best way to identify patients with smoldering HHV-6 > infection is to look for elevated IgG antibody titers. " > > Dharam Ablashi, the co-discoverer of the HHV-6 virus, and the HHV-6 > Foundation's Scientific Director warns that the test won't be available in > the near future. " It may take years to get the assay validated and into > commercial production, but will be worth the wait. This assay could > identify large numbers of patients with CNS dysfunction who could benefit > from antiviral treatment. The HHV-6 Foundation is working hard to help > scientists like Dr. Kondo develop better assays, " says Ablashi. > > The HHV-6 Foundation > > The HHV-6 Foundation encourages scientific exchanges and provides grants > to researchers seeking to increase our understanding of HHV-6 infection > in a wide array of central nervous system disorders. > > Contact: > Loomis > Executive Director > HHV-6 Foundation > Phone: 805-969-1174 > www.hhv-6foundation.org/ <http://www.hhv-6foundation.org/ > <http://www.hhv-6foundation.org/>> > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2008 Report Share Posted July 6, 2008 Yes, I'd be interested. Cheryl On Jul 6, 2008, at 6:40 AM, shona.jordan wrote: > I'd love to be a part of the parent group! I know of 2 other families > in this area who would also be interested. Both are with Dr. > Goldberg. Our speech therapist and close friend, Kay Mathews, would > also probably be interested. She's made every trip to see Dr. G with > us and was instrumental in bringing Dr. G to Tupelo in 2004 and > getting > the word out there through the use of the DVD that was made during the > Tupelo conference. Just let us know what we can do. > > Shona > > > > > > > > Gayle, > > > > > > I'd definitely be interested, if you're still looking for people. > > > > > > Alaine > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2008 Report Share Posted July 6, 2008 Hi Rhonda-Thankyou for your support! I hope we can have our parent board conference soon! I mentioned Wednesday evenings because that's when Dr. Goldberg said it would be convenient for him. I'm sure we can work out a time that's good for Dr. Goldberg and everyone who is interested in participating on the new parent board. Thanks again to all! Gayle HHV6- from the Balto MD conf. > > Sharryl Hemry may be able to comment on this conference > since I think she attended?? > > BALTIMORE, MD, Jun 23 (MARKET WIRE) -- > A study suggests that a " smoldering " central nervous system (CNS) > infection may play a role in conditions that plague millions of > Americans. Kazuhiro Kondo, MD, PhD, of the Jikei University Medical > School in Tokyo identified a novel human herpesvirus-6 (HHV-6) protein > present in Chronic Fatigue Syndrome (CFS) patients but not healthy > controls that may contribute to psychological symptoms often associated > with that and other disorders. > > " Causes of many chronic diseases are unknown and chronic viral infection > is one of the most suspected candidates, " said Dr. Kondo, who spent 20 > years trying to identify the latent protein responsible for chronic CNS > disease and mood disorders. > > Support for Dr. Kondo's claim came from Stanford University's Montoya > who announced at the same conference that the antiviral drug Valcyte, > shown to be effective against HHV-6, resulted in an improvement in the > cognitive functioning of CFS patients, although not a complete resolution > of their fatigue. According to Dr. Kondo, drugs like Valcyte combat active > replication but can't completely control low-level smoldering. " To cure > the diseases, we have to reduce the latently infected virus or prevent its > reactivation, " he explains. > > A Debilitating Disorder > > Chronic Fatigue Syndrome is a debilitating disorder affecting one to four > million Americans and causing 25 billion dollars a year in economic > losses. The primary symptoms include post-exertional malaise, fatigue, > difficulty concentrating, unrefreshing sleep, muscle and joint pain. High > rates of depression co-occur with the disease. > > Mostly striking, in working-age adults, the disease is often triggered by > a flu-like episode. Efforts to find a single pathogen responsible for the > disease have, however, failed and the cause of the disorder is unknown. > > Novel Herpesvirus Protein is Associated with Altered Nervous System Cell > Activity and Chronic Fatigue Syndrome and Depression > > Kondo identified a novel HHV-6 protein associated with latent > (non-replicating) HHV-6-infected nervous system and immune cells. > Transfecting this new protein, called SITH-1 (Small Intermediate Stage > Transcript of HHV-6), into nervous system cells called glial cells, > resulted in greatly increased intracellular calcium levels. Increased > intracellular calcium levels are believed to play an important role in > psychological disorders and can contribute to cell death. Expressing the > SITH protein though the use of an adenoviral vector in mouse resulted in > manic-like behavior. > > A serological study indicated that 71% of CFS patients with psychological > symptoms and none of the health controls possessed the antibody against > the SITH-1 protein (p < .0001). Further tests indicated that 53% of > depression and 76% of bipolar depression patients possessed the antibody. > > Traditional Viral Tests May Overlook Important Disease Causing Processes > > Researchers have suspected that central nervous system infections could > contribute to psychological and central nervous system disorders, and > patients with CFS have a much higher than average rate of depression. This > virus spreads cell-to-cell instead of releasing viral particles into the > bloodstream. This has hampered efforts to demonstrate that the virus plays > a role in CNS disease. " This virus persists in the brain and other > tissues, but not the blood, which is where investigators have looked, " > says Loomis, Executive Director of the HHV-6 Foundation. " Indeed, > standard serum PCR DNA for direct evidence of the virus are useless, " she > added. New ultra-sensitive assays are under development, she reports, " but > currently the best way to identify patients with smoldering HHV-6 > infection is to look for elevated IgG antibody titers. " > > Dharam Ablashi, the co-discoverer of the HHV-6 virus, and the HHV-6 > Foundation's Scientific Director warns that the test won't be available in > the near future. " It may take years to get the assay validated and into > commercial production, but will be worth the wait. This assay could > identify large numbers of patients with CNS dysfunction who could benefit > from antiviral treatment. The HHV-6 Foundation is working hard to help > scientists like Dr. Kondo develop better assays, " says Ablashi. > > The HHV-6 Foundation > > The HHV-6 Foundation encourages scientific exchanges and provides grants > to researchers seeking to increase our understanding of HHV-6 infection > in a wide array of central nervous system disorders. > > Contact: > Loomis > Executive Director > HHV-6 Foundation > Phone: 805-969-1174 > www.hhv-6foundation.org/ <http://www.hhv-6foundation.org/ > <http://www.hhv-6foundation.org/>> > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 7, 2008 Report Share Posted July 7, 2008 HI, I just want to make sure that I am added to list.? My son has been with Dr. G. since he was 5 (he is now 15) and he is doing really well!? Want to be?part of this group so please let me know what I can do. I live in NJ> Thanks. Judy HHV6- from the Balto MD conf. Sharryl Hemry may be able to comment on this conference since I think she attended?? BALTIMORE, MD, Jun 23 (MARKET WIRE) -- A study suggests that a " smoldering " central nervous system (CNS) infection may play a role in conditions that plague millions of Americans. Kazuhiro Kondo, MD, PhD, of the Jikei University Medical School in Tokyo identified a novel human herpesvirus-6 (HHV-6) protein present in Chronic Fatigue Syndrome (CFS) patients but not healthy controls that may contribute to psychological symptoms often associated with that and other disorders. " Causes of many chronic diseases are unknown and chronic viral infection is one of the most suspected candidates, " said Dr. Kondo, who spent 20 years trying to identify the latent protein responsible for chronic CNS disease and mood disorders. Support for Dr. Kondo's claim came from Stanford University's Montoya who announced at the same conference that the antiviral drug Valcyte, shown to be effective against HHV-6, resulted in an improvement in the cognitive functioning of CFS patients, although not a complete resolution of their fatigue. According to Dr. Kondo, drugs like Valcyte combat active replication but can't completely control low-level smoldering. " To cure the diseases, we have to reduce the latently infected virus or prevent its reactivation, " he explains. A Debilitating Disorder Chronic Fatigue Syndrome is a debilitating disorder affecting one to four million Americans and causing 25 billion dollars a year in economic losses. The primary symptoms include post-exertional malaise, fatigue, difficulty concentrating, unrefreshing sleep, muscle and joint pain. High rates of depression co-occur with the disease. Mostly striking, in working-age adults, the disease is often triggered by a flu-like episode. Efforts to find a single pathogen responsible for the disease have, however, failed and the cause of the disorder is unknown. Novel Herpesvirus Protein is Associated with Altered Nervous System Cell Activity and Chronic Fatigue Syndrome and Depression Kondo identified a novel HHV-6 protein associated with latent (non-replicating) HHV-6-infected nervous system and immune cells. Transfecting this new protein, called SITH-1 (Small Intermediate Stage Transcript of HHV-6), into nervous system cells called glial cells, resulted in greatly increased intracellular calcium levels. Increased intracellular calcium levels are believed to play an important role in psychological disorders and can contribute to cell death. Expressing the SITH protein though the use of an adenoviral vector in mouse resulted in manic-like behavior. A serological study indicated that 71% of CFS patients with psychological symptoms and none of the health controls possessed the antibody against the SITH-1 protein (p < .0001). Further tests indicated that 53% of depression and 76% of bipolar depression patients possessed the antibody. Traditional Viral Tests May Overlook Important Disease Causing Processes Researchers have suspected that central nervous system infections could contribute to psychological and central nervous system disorders, and patients with CFS have a much higher than average rate of depression. This virus spreads cell-to-cell instead of releasing viral particles into the bloodstream. This has hampered efforts to demonstrate that the virus plays a role in CNS disease. " This virus persists in the brain and other tissues, but not the blood, which is where investigators have looked, " says Loomis, Executive Director of the HHV-6 Foundation. " Indeed, standard serum PCR DNA for direct evidence of the virus are useless, " she added. New ultra-sensitive assays are under development, she reports, " but currently the best way to identify patients with smoldering HHV-6 infection is to look for elevated IgG antibody titers. " Dharam Ablashi, the co-discoverer of the HHV-6 virus, and the HHV-6 Foundation's Scientific Director warns that the test won't be available in the near future. " It may take years to get the assay validated and into commercial production, but will be worth the wait. This assay could identify large numbers of patients with CNS dysfunction who could benefit from antiviral treatment. The HHV-6 Foundation is working hard to help scientists like Dr. Kondo develop better assays, " says Ablashi. The HHV-6 Foundation The HHV-6 Foundation encourages scientific exchanges and provides grants to researchers seeking to increase our understanding of HHV-6 infection in a wide array of central nervous system disorders. Contact: Loomis Executive Director HHV-6 Foundation Phone: 805-969-1174 www.hhv-6foundation.org/ <http://www.hhv-6foundation.org/> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 7, 2008 Report Share Posted July 7, 2008 Judy, Is your child mainstreaming in education? Has he lost the Autism diagnosis? Any information would be helpful and great for the parent board, as was already mentioned. Michele Davies South Carolina, USA " Ms. Michele " In a message dated 7/7/2008 8:47:38 A.M. Eastern Daylight Time, jgf323@... writes: HI, I just want to make sure that I am added to list.? My son has been with Dr. G. since he was 5 (he is now 15) and he is doing really well!? Want to be?part of this group so please let me know what I can do. I live in NJ> Thanks. Judy HHV6- from the Balto MD conf. Sharryl Hemry may be able to comment on this conference since I think she attended?? BALTIMORE, MD, Jun 23 (MARKET WIRE) -- A study suggests that a " smoldering " central nervous system (CNS) infection may play a role in conditions that plague millions of Americans. Kazuhiro Kondo, MD, PhD, of the Jikei University Medical School in Tokyo identified a novel human herpesvirus-6 (HHV-6) protein present in Chronic Fatigue Syndrome (CFS) patients but not healthy controls that may contribute to psychological symptoms often associated with that and other disorders. " Causes of many chronic diseases are unknown and chronic viral infection is one of the most suspected candidates, " said Dr. Kondo, who spent 20 years trying to identify the latent protein responsible for chronic CNS disease and mood disorders. Support for Dr. Kondo's claim came from Stanford University's Montoya who announced at the same conference that the antiviral drug Valcyte, shown to be effective against HHV-6, resulted in an improvement in the cognitive functioning of CFS patients, although not a complete resolution of their fatigue. According to Dr. Kondo, drugs like Valcyte combat active replication but can't completely control low-level smoldering. " To cure the diseases, we have to reduce the latently infected virus or prevent its reactivation, " he explains. A Debilitating Disorder Chronic Fatigue Syndrome is a debilitating disorder affecting one to four million Americans and causing 25 billion dollars a year in economic losses. The primary symptoms include post-exertional malaise, fatigue, difficulty concentrating, unrefreshing sleep, muscle and joint pain. High rates of depression co-occur with the disease. Mostly striking, in working-age adults, the disease is often triggered by a flu-like episode. Efforts to find a single pathogen responsible for the disease have, however, failed and the cause of the disorder is unknown. Novel Herpesvirus Protein is Associated with Altered Nervous System Cell Activity and Chronic Fatigue Syndrome and Depression Kondo identified a novel HHV-6 protein associated with latent (non-replicating) HHV-6-infected nervous system and immune cells. Transfecting this new protein, called SITH-1 (Small Intermediate Stage Transcript of HHV-6), into nervous system cells called glial cells, resulted in greatly increased intracellular calcium levels. Increased intracellular calcium levels are believed to play an important role in psychological disorders and can contribute to cell death. Expressing the SITH protein though the use of an adenoviral vector in mouse resulted in manic-like behavior. A serological study indicated that 71% of CFS patients with psychological symptoms and none of the health controls possessed the antibody against the SITH-1 protein (p < .0001). Further tests indicated that 53% of depression and 76% of bipolar depression patients possessed the antibody. Traditional Viral Tests May Overlook Important Disease Causing Processes Researchers have suspected that central nervous system infections could contribute to psychological and central nervous system disorders, and patients with CFS have a much higher than average rate of depression. This virus spreads cell-to-cell instead of releasing viral particles into the bloodstream. This has hampered efforts to demonstrate that the virus plays a role in CNS disease. " This virus persists in the brain and other tissues, but not the blood, which is where investigators have looked, " says Loomis, Executive Director of the HHV-6 Foundation. " Indeed, standard serum PCR DNA for direct evidence of the virus are useless, " she added. New ultra-sensitive assays are under development, she reports, " but currently the best way to identify patients with smoldering HHV-6 infection is to look for elevated IgG antibody titers. " Dharam Ablashi, the co-discoverer of the HHV-6 virus, and the HHV-6 Foundation's Scientific Director warns that the test won't be available in the near future. " It may take years to get the assay validated and into commercial production, but will be worth the wait. This assay could identify large numbers of patients with CNS dysfunction who could benefit from antiviral treatment. The HHV-6 Foundation is working hard to help scientists like Dr. Kondo develop better assays, " says Ablashi. The HHV-6 Foundation The HHV-6 Foundation encourages scientific exchanges and provides grants to researchers seeking to increase our understanding of HHV-6 infection in a wide array of central nervous system disorders. Contact: Loomis Executive Director HHV-6 Foundation Phone: 805-969-1174 www.hhv-6foundation.org/ <http://www.hhv-6foundation.org/> [Non-text portions of this message have been removed] [Non-text portions of this message have been removed] [Non-text portions of this message have been removed] ------------------------------------ Responsibility for the content of this message lies strictly with the original author(s), and is not necessarily endorsed by or the opinion of the Research Institute, the Parent Coalition, or the list moderator(s). Groups Links **************Gas prices getting you down? Search AOL Autos for fuel-efficient used cars. (http://autos.aol.com/used?ncid=aolaut00050000000007) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 7, 2008 Report Share Posted July 7, 2008 I would also like to be added to the list for the parent board. My son has been with Dr. G since he was 4 (he is 11-1/2 now). Thanks for putting this together! > > HI, I just want to make sure that I am added to list.? My son has been with Dr. G. since he was 5 (he is now 15) and he is doing really well!? Want to be?part of this group so please let me know what I can do. I live in NJ> > Thanks. > Judy > > HHV6- from the Balto MD conf. > > Sharryl Hemry may be able to comment on this conference > since I think she attended?? > > BALTIMORE, MD, Jun 23 (MARKET WIRE) -- > A study suggests that a " smoldering " central nervous system (CNS) > infection may play a role in conditions that plague millions of > Americans. Kazuhiro Kondo, MD, PhD, of the Jikei University Medical > School in Tokyo identified a novel human herpesvirus-6 (HHV-6) protein > present in Chronic Fatigue Syndrome (CFS) patients but not healthy > controls that may contribute to psychological symptoms often associated > with that and other disorders. > > " Causes of many chronic diseases are unknown and chronic viral infection > is one of the most suspected candidates, " said Dr. Kondo, who spent 20 > years trying to identify the latent protein responsible for chronic CNS > disease and mood disorders. > > Support for Dr. Kondo's claim came from Stanford University's Montoya > who announced at the same conference that the antiviral drug Valcyte, > shown to be effective against HHV-6, resulted in an improvement in the > cognitive functioning of CFS patients, although not a complete resolution > of their fatigue. According to Dr. Kondo, drugs like Valcyte combat active > replication but can't completely control low-level smoldering. " To cure > the diseases, we have to reduce the latently infected virus or prevent its > reactivation, " he explains. > > A Debilitating Disorder > > Chronic Fatigue Syndrome is a debilitating disorder affecting one to four > million Americans and causing 25 billion dollars a year in economic > losses. The primary symptoms include post-exertional malaise, fatigue, > difficulty concentrating, unrefreshing sleep, muscle and joint pain. High > rates of depression co-occur with the disease. > > Mostly striking, in working-age adults, the disease is often triggered by > a flu-like episode. Efforts to find a single pathogen responsible for the > disease have, however, failed and the cause of the disorder is unknown. > > Novel Herpesvirus Protein is Associated with Altered Nervous System Cell > Activity and Chronic Fatigue Syndrome and Depression > > Kondo identified a novel HHV-6 protein associated with latent > (non-replicating) HHV-6-infected nervous system and immune cells. > Transfecting this new protein, called SITH-1 (Small Intermediate Stage > Transcript of HHV-6), into nervous system cells called glial cells, > resulted in greatly increased intracellular calcium levels. Increased > intracellular calcium levels are believed to play an important role in > psychological disorders and can contribute to cell death. Expressing the > SITH protein though the use of an adenoviral vector in mouse resulted in > manic-like behavior. > > A serological study indicated that 71% of CFS patients with psychological > symptoms and none of the health controls possessed the antibody against > the SITH-1 protein (p < .0001). Further tests indicated that 53% of > depression and 76% of bipolar depression patients possessed the antibody. > > Traditional Viral Tests May Overlook Important Disease Causing Processes > > Researchers have suspected that central nervous system infections could > contribute to psychological and central nervous system disorders, and > patients with CFS have a much higher than average rate of depression. This > virus spreads cell-to-cell instead of releasing viral particles into the > bloodstream. This has hampered efforts to demonstrate that the virus plays > a role in CNS disease. " This virus persists in the brain and other > tissues, but not the blood, which is where investigators have looked, " > says Loomis, Executive Director of the HHV-6 Foundation. " Indeed, > standard serum PCR DNA for direct evidence of the virus are useless, " she > added. New ultra-sensitive assays are under development, she reports, " but > currently the best way to identify patients with smoldering HHV-6 > infection is to look for elevated IgG antibody titers. " > > Dharam Ablashi, the co-discoverer of the HHV-6 virus, and the HHV-6 > Foundation's Scientific Director warns that the test won't be available in > the near future. " It may take years to get the assay validated and into > commercial production, but will be worth the wait. This assay could > identify large numbers of patients with CNS dysfunction who could benefit > from antiviral treatment. The HHV-6 Foundation is working hard to help > scientists like Dr. Kondo develop better assays, " says Ablashi. > > The HHV-6 Foundation > > The HHV-6 Foundation encourages scientific exchanges and provides grants > to researchers seeking to increase our understanding of HHV-6 infection > in a wide array of central nervous system disorders. > > Contact: > Loomis > Executive Director > HHV-6 Foundation > Phone: 805-969-1174 > www.hhv-6foundation.org/ <http://www.hhv-6foundation.org/> > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 7, 2008 Report Share Posted July 7, 2008 Hi Michele,? My son is going to high school in September.? He will be in all regular classes except for LAR.? He will have support though.? has a speech and language disorder so he needs some supports.? had no language until around 31/2 and didn't really start developing a vocabulary until around 6.? He is like a walking miracle.? He has friends, plays sports, is the happiest guy and loves life.? He still has a road but he has conquered so much and I have no doubts he will continue to thrive.? We have also been so lucky as everyone in the community has been incredible and the teachers have worked very closely with me through the years to work on all the processing, attention and language issues.? is lucky cause he is one of those kids that is just so easy to love.? Hope this helps. Judyt HHV6- from the Balto MD conf. Sharryl Hemry may be able to comment on this conference since I think she attended?? BALTIMORE, MD, Jun 23 (MARKET WIRE) -- A study suggests that a " smoldering " central nervous system (CNS) infection may play a role in conditions that plague millions of Americans. Kazuhiro Kondo, MD, PhD, of the Jikei University Medical School in Tokyo identified a novel human herpesvirus-6 (HHV-6) protein present in Chronic Fatigue Syndrome (CFS) patients but not healthy controls that may contribute to psychological symptoms often associated with that and other disorders. " Causes of many chronic diseases are unknown and chronic viral infection is one of the most suspected candidates, " said Dr. Kondo, who spent 20 years trying to identify the latent protein responsible for chronic CNS disease and mood disorders. Support for Dr. Kondo's claim came from Stanford University's Montoya who announced at the same conference that the antiviral drug Valcyte, shown to be effective against HHV-6, resulted in an improvement in the cognitive functioning of CFS patients, although not a complete resolution of their fatigue. According to Dr. Kondo, drugs like Valcyte combat active replication but can't completely control low-level smoldering. " To cure the diseases, we have to reduce the latently infected virus or prevent its reactivation, " he explains. A Debilitating Disorder Chronic Fatigue Syndrome is a debilitating disorder affecting one to four million Americans and causing 25 billion dollars a year in economic losses. The primary symptoms include post-exertional malaise, fatigue, difficulty concentrating, unrefreshing sleep, muscle and joint pain. High rates of depression co-occur with the disease. Mostly striking, in working-age adults, the disease is often triggered by a flu-like episode. Efforts to find a single pathogen responsible for the disease have, however, failed and the cause of the disorder is unknown. Novel Herpesvirus Protein is Associated with Altered Nervous System Cell Activity and Chronic Fatigue Syndrome and Depression Kondo identified a novel HHV-6 protein associated with latent (non-replicating) HHV-6-infected nervous system and immune cells. Transfecting this new protein, called SITH-1 (Small Intermediate Stage Transcript of HHV-6), into nervous system cells called glial cells, resulted in greatly increased intracellular calcium levels. Increased intracellular calcium levels are believed to play an important role in psychological disorders and can contribute to cell death. Expressing the SITH protein though the use of an adenoviral vector in mouse resulted in manic-like behavior. A serological study indicated that 71% of CFS patients with psychological symptoms and none of the health controls possessed the antibody against the SITH-1 protein (p < .0001). Further tests indicated that 53% of depression and 76% of bipolar depression patients possessed the antibody. Traditional Viral Tests May Overlook Important Disease Causing Processes Researchers have suspected that central nervous system infections could contribute to psychological and central nervous system disorders, and patients with CFS have a much higher than average rate of depression. This virus spreads cell-to-cell instead of releasing viral particles into the bloodstream. This has hampered efforts to demonstrate that the virus plays a role in CNS disease. " This virus persists in the brain and other tissues, but not the blood, which is where investigators have looked, " says Loomis, Executive Director of the HHV-6 Foundation. " Indeed, standard serum PCR DNA for direct evidence of the virus are useless, " she added. New ultra-sensitive assays are under development, she reports, " but currently the best way to identify patients with smoldering HHV-6 infection is to look for elevated IgG antibody titers. " Dharam Ablashi, the co-discoverer of the HHV-6 virus, and the HHV-6 Foundation's Scientific Director warns that the test won't be available in the near future. " It may take years to get the assay validated and into commercial production, but will be worth the wait. This assay could identify large numbers of patients with CNS dysfunction who could benefit from antiviral treatment. The HHV-6 Foundation is working hard to help scientists like Dr. Kondo develop better assays, " says Ablashi. The HHV-6 Foundation The HHV-6 Foundation encourages scientific exchanges and provides grants to researchers seeking to increase our understanding of HHV-6 infection in a wide array of central nervous system disorders. Contact: Loomis Executive Director HHV-6 Foundation Phone: 805-969-1174 www.hhv-6foundation.org/ <http://www.hhv-6foundation.org/> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2008 Report Share Posted July 8, 2008 Hi Gayle, Please count me in as well. I have a son, 8 years old, that has been a patient of Dr. G's since just before his third birthday. He is doing so well. I really owe Dr. G (and his great staff) and would really like to give back. My husband, Dan, feels the same way. He set up a Wikipedia site on and Dr. G to help get the word out. He's a pretty talented computer programmer/web developer in case that would come in handy. April Jagnow Blue Lips Our daugther has very blue lips every morning after breakfast. Seems fine, no seizure or holding her breath. It has been going on for the past 6 months at least intermittently but we seem to be seeing it increasingly often and it is lasting for longer periods of time. Any thoughts?? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2008 Report Share Posted July 16, 2008 April - my son is about to turn three and just beginning with G - was your child a gut kid. Mne is big timea dnI worry his gut stugg is not going to be addressed by the antivirals...Di > > Hi Gayle, > > Please count me in as well. I have a son, 8 years old, that has been a patient of Dr. G's since just before his third birthday. He is doing so well. I really owe Dr. G (and his great staff) and would really like to give back. My husband, Dan, feels the same way. He set up a Wikipedia site on and Dr. G to help get the word out. He's a pretty talented computer programmer/web developer in case that would come in handy. > > April Jagnow > > > Blue Lips > > Our daugther has very blue lips every morning after breakfast. Seems > fine, no seizure or holding her breath. It has been going on for the > past 6 months at least intermittently but we seem to be seeing it > increasingly often and it is lasting for longer periods of time. > > Any thoughts?? > > > > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.