Post by betsy on Jan 20, 2008 1:37:02 GMT -5
After the press conference, I have tried to contact some of the reporters to express concerns I feel over the selection of Kaiser to head this study of Morgellons.
Each letter has been slightly different and individualized to each reporter. Below is (1)the article written by LA Times Reporter and (2)the letter I wrote to him
LA TIMES ARTICLE by Jia-Rui Chong on Jan. 19, 08 CDC/Kaiser Press Conference
He was one of the 14 reporters asking questions at the press conference.
This is the question he asked in CDC Press Conference on Jan 16, 08
Q-Hi- I was hoping two things. One that you could answer the previous question about how many reports you've actually received, that there are numbers on that. And, then, I had another question hoping that maybe you could straighten out some of the timelines for me. When was it that, I guess, patients or groups started requesting this? And then, what are the actual steps that the CDC took? Because I feel like there were rumblings about starting a study in 2006, and then maybe a couple of months ago, so I was hoping to clarify. (See transcript for answers provided by Michele Pearson-too lengthy to post. )
This is the article he wrote after the conference:
Morgellons study launched in California
Sufferers, who feel crawling sensations and see fibers coming out of their skin, hope the research legitimizes the illness.
By Jia-Rui Chong, Los Angeles Times Staff Writer
January 19, 2008
After years of patients' complaints, the U.S. Centers for Disease Control and Prevention has launched a study into a bizarre -- and possibly delusional -- condition known as Morgellons, in which sufferers typically feel crawling sensations and observe fibers coming out of their skin.
The agency first started hearing about the condition from a handful of patients in about 2002. It now receives about 1,200 inquiries a year.
The study will look at patients in Kaiser Permanente's Northern California network because that area has been a hot spot of reported cases.
"We are really at the beginning, I think, of a learning curve about what this condition is and all of its potential manifestations," said Dr. Michele Pearson, a CDC physician who is heading up the study. "Those who suffer from this condition, as well as the family members and physicians who provide care to them, have questions, and we want to help them find meaningful answers."
The study, expected to take a year, will look at patients at Kaiser hospitals in Northern California from July 1, 2006, to Dec. 31, 2007. Researchers will survey probable Morgellons sufferers and collect skin, blood and urine samples.
About 11,000 families in about 16 countries have registered their illnesses with the Morgellons Research Foundation, a group started by Mary M. Leitao, a Pittsburgh mother who found an abnormal rash on her son in 2001. She named the disease after a reference in a 17th century French medical text of "strange hairs" sprouting from children's backs.
"I hope they find quick answers within this small group of patients that will help the larger group of patients very quickly," Leitao said.
Leitao said she hopes the study will help legitimize the disease, which many doctors have diagnosed as delusional parasitosis and treated with anti-psychotic medications.
Dr. Mark Horowitz, a Torrance dermatologist who has seen hundreds complaining of Morgellons, said he hoped the CDC study would settle the uncertainty about the condition: "I believe it's a real entity [but] I'll be very surprised if they find anything more than a psychiatric disease."
jia-rui.chong@latimes.com
______________________________________________________
Rest your eyes a bit so you have energy left to read my letter.
Thanks "Betsy"
This is the letter I wrote to him regarding the selection of Kaiser for this study.
To: jia-rui.chong@latimes.com
Dear L A Times Reporter Jia-Rui Chong:
My name is ___________ from Los Angeles County (Long Beach). I am writing to you in response to the CDC/Kaiser Telephone Press Conference on Wednesday, January 16, 2008, and your subsequent article in the LA Times on January 18, 2008.
First of all, I was listening to the live Press Conference as I am a member of the Morgellons Community and highly interested. I was particularly interested in the questions you asked and the answers you received from Dr. Pearson. I see you wove some of these answers into your article. Thank you for taking an interest in this "bizarre condition".
In some respects it is wonderful news to have a study finally underway. Many Morgellon sufferers are quite optimistic and hopeful. A few of us are rather skeptical of the selection of Kaiser and the related implications. Since you will undoubtedly be reporting the results of this study when it is complete, I would like to present some concerns ahead of time that you may be alerted to another viewpoint.
I am glad this long-overdue survey-investigation is beginning. However, I do have concerns at the selection of Kaiser for several reasons:
1. Kaiser and the CDC are maintaining a closed survey not available to the Morgellons population outside the institution of Kaiser( Northern California ). Therefore it is targeting a specific geographic area but creating a barrier that disallows actual representation of Morgellons sufferers within that target area. If they don't belong to Kaiser, they don't exist for the purpose of the survey. I do not find this statistically representative of the selected target area.
2. The working relationship between Kaiser and the CDC does not allow for transparency or feedback to the Morgellons Community and any doctors or researchers currently involved. It is designed as a closed process resulting in an end report that is not verifiable to/by those experts working outside the Kaiser/CDC partnership.
3. Kaiser/CDC have predetermined a window of time (July 1, 2006- Dec. 31, 2007) on which to base total outcome analysis. It is my impression being a member of Morgellons community at large and aware to some degree of new emerging posters on Morgellon websites, that new cases of Morgellons were emerging at a faster rate in late 2004- early 2006. Therefore I have some concerns as to why Kaiser is selecting a limited time frame for examination which excludes 2004-2006. Will it be truly representative of emerging cases?
4. How is it that the Director of this Kaiser Project, Dr. Joe Selby, appears to have limited knowledge about existing cases of Morgellons within Kaiser. Has no one checked cases reported to Kaiser within the year's negotiations for this contract? Wouldn't they be just a little curious prior to accepting the contract and making proposals for testing? (Perhaps this information is protected by doctor-patient confidentiality. Perhaps it already shows up in diagnostic codes and is not being discussed.
5. Dr. Hildegard Staninger in Los Angeles (see Staninger Report) has identified
silcon nanotubes containing viral protein envelopes, DNA plasmids, DNA/RNA/siRNA plasmid cassettes. Put in plain English- nanotechnology has been identified (by high powered lab). Unless Kaiser is looking for nanotech using appropriate equipment and methods, they may come back with a diagnosis that
completely misses the root problem of Morgellons.
6. Kaiser may have a conflict of interest in accepting this contract. If they have seen and diagnosed any patients in the designated window of time or even before, they may put themselves in the position of contradicting their own previous diagnosis. If, for example, they have diagnosed DOP (delusions of parasitosis) for previous cases of Morgellons, they would then find themselves in the position of either agreeing with their previous diagnosis and declaring everyone delusional or subjecting themselves to possible lawsuits on the basis of malpractice. What would be the incentive to criticize their own physicians and their previous diagnosis?
Research into Morgellons is desperately needed. However, I am very concerned that Kaiser is not a wise choice for this task. I feel the tax payer money could have been better spent. A closed study with no outside supervision or intervention is an invitation to skew the outcome in desired directions.
If Dr. Staninger (see Staninger Report) happens to be correct that this condition
involves man-made nanotechnology, Kaiser HMO is not exactly qualified to
scan for this possibility. Likewise, if it involves agrobacterium as suggested by another researcher, then once again, Kaiser HMO is not qualified. If they were able to discover or diagnose what is causing this condition, one would think they would have applied that diagnosis/cure to their previous cases of Morgellons. But as most all patients with Morgellons have discovered, normal avenues of medicine are not producing results in figuring out the cause of Morgellons.
The possible involvement of the Army Military Lab does suggest a cause for hope
and for concern at the same time. If this IS a man-made pathogen, the military has sophisticated labs to help examine specimens. On the other hand, the military also is in the business of creating pathogens for warfare (read Lab 257).
If Morgellons happen to be the result of one of their own mistakes released into the environment, would they step up to the plate and confess? Likewise,would they tattle on an industry using nanotech or agrobacterium that accidentally got released?
Wouldn't it just be less fuss to declare this relatively small group of people (10,000 or so in the USA) expendable?
Thank you for taking time to read my viewpoint on the selection of Kaiser HMO for this project.
Sincerely,
___________________
P.S. I 'm sorry to hear that "hundreds of patients" have subjected themselves to Dr. Horowitz. Most dermatologist are not derma-pathologists and have woefully inadequate training. After they run out of the short known list of possible pathogens they resort to "labels" well outside their field of expertise.
Each letter has been slightly different and individualized to each reporter. Below is (1)the article written by LA Times Reporter and (2)the letter I wrote to him
LA TIMES ARTICLE by Jia-Rui Chong on Jan. 19, 08 CDC/Kaiser Press Conference
He was one of the 14 reporters asking questions at the press conference.
This is the question he asked in CDC Press Conference on Jan 16, 08
Q-Hi- I was hoping two things. One that you could answer the previous question about how many reports you've actually received, that there are numbers on that. And, then, I had another question hoping that maybe you could straighten out some of the timelines for me. When was it that, I guess, patients or groups started requesting this? And then, what are the actual steps that the CDC took? Because I feel like there were rumblings about starting a study in 2006, and then maybe a couple of months ago, so I was hoping to clarify. (See transcript for answers provided by Michele Pearson-too lengthy to post. )
This is the article he wrote after the conference:
Morgellons study launched in California
Sufferers, who feel crawling sensations and see fibers coming out of their skin, hope the research legitimizes the illness.
By Jia-Rui Chong, Los Angeles Times Staff Writer
January 19, 2008
After years of patients' complaints, the U.S. Centers for Disease Control and Prevention has launched a study into a bizarre -- and possibly delusional -- condition known as Morgellons, in which sufferers typically feel crawling sensations and observe fibers coming out of their skin.
The agency first started hearing about the condition from a handful of patients in about 2002. It now receives about 1,200 inquiries a year.
The study will look at patients in Kaiser Permanente's Northern California network because that area has been a hot spot of reported cases.
"We are really at the beginning, I think, of a learning curve about what this condition is and all of its potential manifestations," said Dr. Michele Pearson, a CDC physician who is heading up the study. "Those who suffer from this condition, as well as the family members and physicians who provide care to them, have questions, and we want to help them find meaningful answers."
The study, expected to take a year, will look at patients at Kaiser hospitals in Northern California from July 1, 2006, to Dec. 31, 2007. Researchers will survey probable Morgellons sufferers and collect skin, blood and urine samples.
About 11,000 families in about 16 countries have registered their illnesses with the Morgellons Research Foundation, a group started by Mary M. Leitao, a Pittsburgh mother who found an abnormal rash on her son in 2001. She named the disease after a reference in a 17th century French medical text of "strange hairs" sprouting from children's backs.
"I hope they find quick answers within this small group of patients that will help the larger group of patients very quickly," Leitao said.
Leitao said she hopes the study will help legitimize the disease, which many doctors have diagnosed as delusional parasitosis and treated with anti-psychotic medications.
Dr. Mark Horowitz, a Torrance dermatologist who has seen hundreds complaining of Morgellons, said he hoped the CDC study would settle the uncertainty about the condition: "I believe it's a real entity [but] I'll be very surprised if they find anything more than a psychiatric disease."
jia-rui.chong@latimes.com
______________________________________________________
Rest your eyes a bit so you have energy left to read my letter.
Thanks "Betsy"
This is the letter I wrote to him regarding the selection of Kaiser for this study.
To: jia-rui.chong@latimes.com
Dear L A Times Reporter Jia-Rui Chong:
My name is ___________ from Los Angeles County (Long Beach). I am writing to you in response to the CDC/Kaiser Telephone Press Conference on Wednesday, January 16, 2008, and your subsequent article in the LA Times on January 18, 2008.
First of all, I was listening to the live Press Conference as I am a member of the Morgellons Community and highly interested. I was particularly interested in the questions you asked and the answers you received from Dr. Pearson. I see you wove some of these answers into your article. Thank you for taking an interest in this "bizarre condition".
In some respects it is wonderful news to have a study finally underway. Many Morgellon sufferers are quite optimistic and hopeful. A few of us are rather skeptical of the selection of Kaiser and the related implications. Since you will undoubtedly be reporting the results of this study when it is complete, I would like to present some concerns ahead of time that you may be alerted to another viewpoint.
I am glad this long-overdue survey-investigation is beginning. However, I do have concerns at the selection of Kaiser for several reasons:
1. Kaiser and the CDC are maintaining a closed survey not available to the Morgellons population outside the institution of Kaiser( Northern California ). Therefore it is targeting a specific geographic area but creating a barrier that disallows actual representation of Morgellons sufferers within that target area. If they don't belong to Kaiser, they don't exist for the purpose of the survey. I do not find this statistically representative of the selected target area.
2. The working relationship between Kaiser and the CDC does not allow for transparency or feedback to the Morgellons Community and any doctors or researchers currently involved. It is designed as a closed process resulting in an end report that is not verifiable to/by those experts working outside the Kaiser/CDC partnership.
3. Kaiser/CDC have predetermined a window of time (July 1, 2006- Dec. 31, 2007) on which to base total outcome analysis. It is my impression being a member of Morgellons community at large and aware to some degree of new emerging posters on Morgellon websites, that new cases of Morgellons were emerging at a faster rate in late 2004- early 2006. Therefore I have some concerns as to why Kaiser is selecting a limited time frame for examination which excludes 2004-2006. Will it be truly representative of emerging cases?
4. How is it that the Director of this Kaiser Project, Dr. Joe Selby, appears to have limited knowledge about existing cases of Morgellons within Kaiser. Has no one checked cases reported to Kaiser within the year's negotiations for this contract? Wouldn't they be just a little curious prior to accepting the contract and making proposals for testing? (Perhaps this information is protected by doctor-patient confidentiality. Perhaps it already shows up in diagnostic codes and is not being discussed.
5. Dr. Hildegard Staninger in Los Angeles (see Staninger Report) has identified
silcon nanotubes containing viral protein envelopes, DNA plasmids, DNA/RNA/siRNA plasmid cassettes. Put in plain English- nanotechnology has been identified (by high powered lab). Unless Kaiser is looking for nanotech using appropriate equipment and methods, they may come back with a diagnosis that
completely misses the root problem of Morgellons.
6. Kaiser may have a conflict of interest in accepting this contract. If they have seen and diagnosed any patients in the designated window of time or even before, they may put themselves in the position of contradicting their own previous diagnosis. If, for example, they have diagnosed DOP (delusions of parasitosis) for previous cases of Morgellons, they would then find themselves in the position of either agreeing with their previous diagnosis and declaring everyone delusional or subjecting themselves to possible lawsuits on the basis of malpractice. What would be the incentive to criticize their own physicians and their previous diagnosis?
Research into Morgellons is desperately needed. However, I am very concerned that Kaiser is not a wise choice for this task. I feel the tax payer money could have been better spent. A closed study with no outside supervision or intervention is an invitation to skew the outcome in desired directions.
If Dr. Staninger (see Staninger Report) happens to be correct that this condition
involves man-made nanotechnology, Kaiser HMO is not exactly qualified to
scan for this possibility. Likewise, if it involves agrobacterium as suggested by another researcher, then once again, Kaiser HMO is not qualified. If they were able to discover or diagnose what is causing this condition, one would think they would have applied that diagnosis/cure to their previous cases of Morgellons. But as most all patients with Morgellons have discovered, normal avenues of medicine are not producing results in figuring out the cause of Morgellons.
The possible involvement of the Army Military Lab does suggest a cause for hope
and for concern at the same time. If this IS a man-made pathogen, the military has sophisticated labs to help examine specimens. On the other hand, the military also is in the business of creating pathogens for warfare (read Lab 257).
If Morgellons happen to be the result of one of their own mistakes released into the environment, would they step up to the plate and confess? Likewise,would they tattle on an industry using nanotech or agrobacterium that accidentally got released?
Wouldn't it just be less fuss to declare this relatively small group of people (10,000 or so in the USA) expendable?
Thank you for taking time to read my viewpoint on the selection of Kaiser HMO for this project.
Sincerely,
___________________
P.S. I 'm sorry to hear that "hundreds of patients" have subjected themselves to Dr. Horowitz. Most dermatologist are not derma-pathologists and have woefully inadequate training. After they run out of the short known list of possible pathogens they resort to "labels" well outside their field of expertise.