Guest guest Posted August 9, 2004 Report Share Posted August 9, 2004 Hi, I have been going to NIh for the EDS study for years (under the old protocol and was the first under this new one) and also as an inpatient for the POTS protocol. This new protocol, being located in Baltimore, is more restricted in what they can do outside of the strict language of the protocol. In the past, they had all the resources of the clinical center and it was just easier to have testing done that you needed and treatment as needed. There is hope that they will have more resources and opportunities at Bayview(the hospital in Baltimore) before long. There are many people who even have surgery at NIH. Usually, treatment is reserved for those protocols that are called " treatment protocols " . I hope that this makes sense...at least a little bit.To sum it up...they are limited to what the protocol calls for. PS.. I hope to see Clair Francomano in about ten days and will talk to her about this if I have the opportunity Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2004 Report Share Posted August 9, 2004 Hi, I have been going to NIh for the EDS study for years (under the old protocol and was the first under this new one) and also as an inpatient for the POTS protocol. This new protocol, being located in Baltimore, is more restricted in what they can do outside of the strict language of the protocol. In the past, they had all the resources of the clinical center and it was just easier to have testing done that you needed and treatment as needed. There is hope that they will have more resources and opportunities at Bayview(the hospital in Baltimore) before long. There are many people who even have surgery at NIH. Usually, treatment is reserved for those protocols that are called " treatment protocols " . I hope that this makes sense...at least a little bit.To sum it up...they are limited to what the protocol calls for. PS.. I hope to see Clair Francomano in about ten days and will talk to her about this if I have the opportunity Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2004 Report Share Posted August 9, 2004 , Dylan and I will be there the 17th and 18th. & days. Sounds like we will miss you :~( So close! I'll email you at home, I have a few questions. Cindylouwho Re: NIH and treatment Hi, I have been going to NIh for the EDS study for years (under the old protocol and was the first under this new one) and also as an inpatient for the POTS protocol. This new protocol, being located in Baltimore, is more restricted in what they can do outside of the strict language of the protocol. In the past, they had all the resources of the clinical center and it was just easier to have testing done that you needed and treatment as needed. There is hope that they will have more resources and opportunities at Bayview(the hospital in Baltimore) before long. There are many people who even have surgery at NIH. Usually, treatment is reserved for those protocols that are called " treatment protocols " . I hope that this makes sense...at least a little bit.To sum it up...they are limited to what the protocol calls for. PS.. I hope to see Clair Francomano in about ten days and will talk to her about this if I have the opportunity Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2004 Report Share Posted August 12, 2004 Thanks to all who responded to my email about the NIH study. It's good to be back in this group. (I was a part of the list for quite awhile some time ago, but when my husband changed out internet service I just never registered with my new email address.) Cindy L Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2004 Report Share Posted August 12, 2004 It's good to have you back Cindy! Jill NIH and treatment > Thanks to all who responded to my email about the NIH study. It's good to > be back in this group. (I was a part of the list for quite awhile some time > ago, but when my husband changed out internet service I just never > registered with my new email address.) > Cindy L Quote Link to comment Share on other sites More sharing options...
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