Post by greema on Nov 30, 2006 16:33:24 GMT -5
Dr Staninger - Research Update
A few people have contacted me recently and have wanted updates on what is happening with the new research that is being conducted by Dr Staninger and Dr Karjoo.
These researchers are willing to share the progress of their research with the Morgellons Community on an ongoing basis. They know those of us with this disease are not good at long silences or having to wonder what is going on. I thank them for their willingness to include us in the process with all that is happening.
The road to research for this disease has never been an easy one. There have been some problems along the way that I can share with everyone.
First of all there have been problems with the processing of the samples from Morgellons patients. This has resulted in a delay in contacting all those who have phoned or emailed as volunteers. When the staff at Dr Karjoo's office became educated as to the nature and probable contagion of this disease they became frightened. The entire staff refused to subject themselves to handling any of the samples. Since there were no guidelines available from the CDC on how to safely handle the microscopic samples this was a problem. Another obstacle was that since microscopic Morgellons fibers can literally fill the environment of Morgellons sufferers there was another question as to the possible contamination of the packing materials themselves .
The reality of this disease is that there are so many microscopic particles that come from sufferers that are tiny enough to be inhaled etc. that the thought of having to take a chance with their own lives was more than the staff at Dr Karjoo's office was willing to deal with. I can't say I blame them.
In the meanwhile Dr Staninger and Dr Karjoo have been setting up a new lab at a new location so that they will be the only ones who need to handle any of the samples or packages. That new location has been obtained and is now being readied. I am assured that everyone will be contacted regarding samples. This will be a gradual process as there are only two of them who must now do everything.
Another obstacle has been finding more funding. The cost of the original lab work was $29,125.00 which was donated by a private individual. When presenting samples of fibers and tissue to laboratories as unknowns the costs are phenomenal and went over budget by approximately $20,000.00 . As of today $10,000 was receive by a generous Morgellons afflicted family . This leaves a balance of $10,000.00 in order to retrieve the comprehensive laboratory report.from a total of 12 samples from 3 areas of the United State and one from Australia . It will not be possible to release portions of the lab results because of the comparative nature of the work.
When those generous individual (s) out there who are interested in seeing the completed work feel the nudge to come forward with the $10,000 balance ( or any part of the total amount needed ) to retrieve the final lab reports prompt notification of the findings to the folks at Morgellons Group and the rest of the Morgellons community will be forthcoming within days. Contributions will be fully tax deductible as authorized by the state of California.
Dr, Hildy, Dr Karjoo and Shoshanna have been walking on eggshells awaiting these final results. The phone calls and emails from suffering Morgellons victims pour in. Along with those calls have begun inquiries from professionals and government officials . Everyone involved in this horrific scenario is as anxious as the next person to know more. The moment the additional funding is in for this phase of the research you will know what we know. We are all praying that the final $10,000.00 needed for this phase arrives before the holidays so that Dr Hildy can spend the last two weeks of December writing her paper for publication. Preliminary findings will be published as soon as they are received. Dr Hildy and Dr Karjoo are still on board with us for the duration. Over the years, Dr. Hildy's research has specialized in treatments that focus on enhanced cellular integrity. In the course of looking for answers, she will be trying all of the techniques she knows to see if any of them is helpful. Clinical trials will be done to determine the effectiveness of various treatments for Morgellons disease. The goal is to find a combination of things that will be helpful long-term.
I know as a group that all of us with Morgellons disease have become a bit cynical since we have suffered so many disappointments and long lapses of communication with other researchers. Dr. Hildy is willing to keep the lines of communication open and honest with us about her progress with the research. I know we are all happy to hear that.
If anyone has further questions feel free to PM me at this board.
Love and Hope,
greema - Jan Smith
A few people have contacted me recently and have wanted updates on what is happening with the new research that is being conducted by Dr Staninger and Dr Karjoo.
These researchers are willing to share the progress of their research with the Morgellons Community on an ongoing basis. They know those of us with this disease are not good at long silences or having to wonder what is going on. I thank them for their willingness to include us in the process with all that is happening.
The road to research for this disease has never been an easy one. There have been some problems along the way that I can share with everyone.
First of all there have been problems with the processing of the samples from Morgellons patients. This has resulted in a delay in contacting all those who have phoned or emailed as volunteers. When the staff at Dr Karjoo's office became educated as to the nature and probable contagion of this disease they became frightened. The entire staff refused to subject themselves to handling any of the samples. Since there were no guidelines available from the CDC on how to safely handle the microscopic samples this was a problem. Another obstacle was that since microscopic Morgellons fibers can literally fill the environment of Morgellons sufferers there was another question as to the possible contamination of the packing materials themselves .
The reality of this disease is that there are so many microscopic particles that come from sufferers that are tiny enough to be inhaled etc. that the thought of having to take a chance with their own lives was more than the staff at Dr Karjoo's office was willing to deal with. I can't say I blame them.
In the meanwhile Dr Staninger and Dr Karjoo have been setting up a new lab at a new location so that they will be the only ones who need to handle any of the samples or packages. That new location has been obtained and is now being readied. I am assured that everyone will be contacted regarding samples. This will be a gradual process as there are only two of them who must now do everything.
Another obstacle has been finding more funding. The cost of the original lab work was $29,125.00 which was donated by a private individual. When presenting samples of fibers and tissue to laboratories as unknowns the costs are phenomenal and went over budget by approximately $20,000.00 . As of today $10,000 was receive by a generous Morgellons afflicted family . This leaves a balance of $10,000.00 in order to retrieve the comprehensive laboratory report.from a total of 12 samples from 3 areas of the United State and one from Australia . It will not be possible to release portions of the lab results because of the comparative nature of the work.
When those generous individual (s) out there who are interested in seeing the completed work feel the nudge to come forward with the $10,000 balance ( or any part of the total amount needed ) to retrieve the final lab reports prompt notification of the findings to the folks at Morgellons Group and the rest of the Morgellons community will be forthcoming within days. Contributions will be fully tax deductible as authorized by the state of California.
Dr, Hildy, Dr Karjoo and Shoshanna have been walking on eggshells awaiting these final results. The phone calls and emails from suffering Morgellons victims pour in. Along with those calls have begun inquiries from professionals and government officials . Everyone involved in this horrific scenario is as anxious as the next person to know more. The moment the additional funding is in for this phase of the research you will know what we know. We are all praying that the final $10,000.00 needed for this phase arrives before the holidays so that Dr Hildy can spend the last two weeks of December writing her paper for publication. Preliminary findings will be published as soon as they are received. Dr Hildy and Dr Karjoo are still on board with us for the duration. Over the years, Dr. Hildy's research has specialized in treatments that focus on enhanced cellular integrity. In the course of looking for answers, she will be trying all of the techniques she knows to see if any of them is helpful. Clinical trials will be done to determine the effectiveness of various treatments for Morgellons disease. The goal is to find a combination of things that will be helpful long-term.
I know as a group that all of us with Morgellons disease have become a bit cynical since we have suffered so many disappointments and long lapses of communication with other researchers. Dr. Hildy is willing to keep the lines of communication open and honest with us about her progress with the research. I know we are all happy to hear that.
If anyone has further questions feel free to PM me at this board.
Love and Hope,
greema - Jan Smith