Guest guest Posted April 2, 2004 Report Share Posted April 2, 2004 In a message dated 4/1/2004 10:28:30 PM Eastern Standard Time, winsomme@... writes: > does anybody know what the NCF's current stance is on the association > of HHV-6A and CFS. i know that over the past few years they have > written quite a few hopeful articles about finding a possible link > between the two and that one of their members tested positive for the > virus, but i just don't know what their current feelings are. > > The NCF funded work on HHV-6 done and published by Drs. Knox and Carrigan several years ago. The first person ever tested for HHV-6 was one of our members but those tested for the research were not chosen for us. There are clincians chosen for that aspect of trials. CFIDS/ME turned out to have the same type (A) and same strain (gs) as found in AIDS. However, it is not a causative agent for either and treating it does not make one completely well. The NCF feels that only by finding the main causative agent (s) can the treatment (s) be successful and are raising money to that end right now. Gail Kansky Pres., National CFIDS Foundation, Inc. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2004 Report Share Posted April 2, 2004 NCF's policy on HHV6, as of 2 years ago, was that if you don't have HHV6, you don't have CFS. Straight from G Kansky to me. I have not followed them since, so I don't know what their ideas are these days. Jim In a message dated 4/1/2004 10:27:47 PM Eastern Standard Time, winsomme@... writes: > does anybody know what the NCF's current stance is on the association > of HHV-6A and CFS Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2004 Report Share Posted April 2, 2004 gail thanks for the reply. i had a couple of other questions. 1) do you know what treatment that memeber of your group used to treat their HHV-6A? was it foscarnet or ganciclovir or something else? 2) the Dr Knox and Carrigan website lists a study they are doing that is funded by the NCF. It is the one where they are trying to recreate an earlier study of Dr Defreitas where she found HTLV-II genes in some PWCs. it has been up on their site for some time now, and i was wondering if it had been completed. thanks bill > The NCF funded work on HHV-6 done and published by Drs. Knox and Carrigan > several years ago. The first person ever tested for HHV-6 was one of our members > but those tested for the research were not chosen for us. There are > clincians chosen for that aspect of trials. CFIDS/ME turned out to have the same type > (A) and same strain (gs) as found in AIDS. However, it is not a causative > agent for either and treating it does not make one completely well. The NCF > feels that only by finding the main causative agent (s) can the treatment (s) be > successful and are raising money to that end right now. > > Gail Kansky > Pres., National CFIDS Foundation, Inc. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2004 Report Share Posted April 2, 2004 The NCF has funded STAT1 research with Knox and Carrigan. That work is currently underway. Beach > gail > > thanks for the reply. i had a couple of other questions. > > 1) do you know what treatment that memeber of your group used to > treat their HHV-6A? was it foscarnet or ganciclovir or something else? > > 2) the Dr Knox and Carrigan website lists a study they are doing that > is funded by the NCF. It is the one where they are trying to recreate > an earlier study of Dr Defreitas where she found HTLV-II genes in > some PWCs. it has been up on their site for some time now, and i was > wondering if it had been completed. > > thanks > bill > > > > > The NCF funded work on HHV-6 done and published by Drs. Knox and > Carrigan > > several years ago. The first person ever tested for HHV-6 was one > of our members > > but those tested for the research were not chosen for us. There > are > > clincians chosen for that aspect of trials. CFIDS/ME turned out to > have the same type > > (A) and same strain (gs) as found in AIDS. However, it is not a > causative > > agent for either and treating it does not make one completely > well. The NCF > > feels that only by finding the main causative agent (s) can the > treatment (s) be > > successful and are raising money to that end right now. > > > > Gail Kansky > > Pres., National CFIDS Foundation, Inc. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2004 Report Share Posted April 3, 2004 Thanks gail, do you mean NCF is thinking another infective agent, viral or what is causing CFS and where does ciguatera epitope fit in, is it produced by his virus and is the virus manmade as I've read? Thanks for all the work the NCF is doing, excellent. BW, Sheila > Re: NCF/HHV-6 > > > In a message dated 4/1/2004 10:28:30 PM Eastern Standard Time, > winsomme@... writes: > > > does anybody know what the NCF's current stance is on the association > > of HHV-6A and CFS. i know that over the past few years they have > > written quite a few hopeful articles about finding a possible link > > between the two and that one of their members tested positive for the > > virus, but i just don't know what their current feelings are. > > > > > The NCF funded work on HHV-6 done and published by Drs. Knox and Carrigan > several years ago. The first person ever tested for HHV-6 was > one of our members > but those tested for the research were not chosen for us. There are > clincians chosen for that aspect of trials. CFIDS/ME turned out > to have the same type > (A) and same strain (gs) as found in AIDS. However, it is not a > causative > agent for either and treating it does not make one completely > well. The NCF > feels that only by finding the main causative agent (s) can the > treatment (s) be > successful and are raising money to that end right now. > > Gail Kansky > Pres., National CFIDS Foundation, Inc. > > > 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.