Post by LymeEnigma on May 30, 2008 11:22:15 GMT -8
Full article: lymeblog.com/modules.php?name=News&file=article&sid=1430
There appear to be at least seven grant recipients for 2008:
"Under Our Skin
TTC is involved with the national distributions of the first feature-length documentary that reveals the untold story of Lyme disease. Under Our Skin investigates the shocking human, medical and political dimensions of this disease and was accepted to the prestigious Tribeca Film Festival, Berkshire International Film Festival and Silver Docs Festival. TTC has entered into this strategic partnership because this film has the potential to reach hundreds of thousands of people and it will further TTC's vision of education and awareness of the physical, emotional and social effects of Lyme disease.
"Cheryl Koopman, Ph.D.
Standford University in Stanford, CA
This research project will focus on treatment studies for various classes of Lyme patients. It is unique because it includes subjects that have a clinical diagnosis of Lyme disease but have tested negative using standard criteria. These types of patients are often excluded from Lyme disease research. This study will determine if these types of patients require treatment approaches different from today's conventions.
"This research is critical because Lyme disease is notorious for false negatives, resulting in patients who are told they do not need treatment. In reality, these patients are sick and deserve a treatment approach tailored to their needs.
"Eva Sapi, Ph.D.
University of New Haven in West Haven, CT
One study aims to identify whether or not deer ticks carry nematodes (microscopic worms) in order to develop more focused treatment for patients infected by tick bites. The second study explores whether Borrelia burgdorferi, the bacterial agent of Lyme disease, is capable of forming a complex covering called biofilm and if this biofilm increases its resistance to antibiotic treatment.
"Alan MacDonald, M.D.
St. Catherine of Siena Medical Center in Smithtown, NY
This study will explore if a Borrelia burgdorferi infection is the cause of neurodegenerative diseases, such as Alzheimer's disease. It will also seek to discover the role of biofilms in Borrelia infections.
"Raphael B. Stricker, M.D.
San Francisco, CA
This study focuses on reviewing the effectiveness of IV antibiotic treatment for Lyme disease. In studying various doses given at different intervals, doctors will be able to determine the best course of treatment for patients requiring antibiotics. This study is the one of the first-ever analyses of the safety and efficacy of true long-term IV antibiotic therapy for neurologic Lyme disease.
"Lyme Literacy Programs for Doctors and Patients
National
TTC also allocates funds for public relations efforts, support groups and educational conferences focused on Lyme disease, projects that increase awareness and further education of this devastating disease. TTC is proud to continue the Physicians Training Program, which provides medical practitioners the opportunity to study with a Lyme-literate health care professional. Through this experience, participants develop the skills necessary to properly diagnose and treat Lyme disease. The Lyme Educational Awareness Development Series (LEADS) was created by TTC to enable community members to host their own educational event on Lyme disease and raise money for a cause that has meaning to them.
"Note: Several other grants are pending approval."
_______________________________________________________
While I am delighted to see Turn the Corner backing so much research, I do have some questions regarding a couple of studies.
The most troubling is this one:
"Cheryl Koopman, Ph.D.
Standford University in Stanford, CA
This research project will focus on treatment studies for various classes of Lyme patients. It is unique because it includes subjects that have a clinical diagnosis of Lyme disease but have tested negative using standard criteria. These types of patients are often excluded from Lyme disease research. This study will determine if these types of patients require treatment approaches different from today's conventions."
What concerns me is the fact that Lyme disease does share so many symptoms with so many other diseases ... and we've proven here, at LE, that there are more than enough potentially chronic, "Lyme-like" illnesses to go around. So, if this doctor is only studying subjects who have solely tested negative for Lyme, how on earth does this researcher expect to substantiate any of her findings? Is she simply going to assume the medical community is going to respect a clinical diagnosis in all of these cases? Is she going to go through the rigorous testing required to ensure that these subjects do not, in fact, have something other than Lyme?
And then, forgive my bias, but this one concerns me, as well:
"Raphael B. Stricker, M.D.
San Francisco, CA
This study focuses on reviewing the effectiveness of IV antibiotic treatment for Lyme disease. In studying various doses given at different intervals, doctors will be able to determine the best course of treatment for patients requiring antibiotics. This study is the one of the first-ever analyses of the safety and efficacy of true long-term IV antibiotic therapy for neurologic Lyme disease."
Will this be an actual double-blind trial? Or will it just be a group case study of all of his existing patients? Where will the checks and balances be placed, to ensure there is no room for personal bias? Will anyone else (i.e. someone who has never had result validation issues in the past) be overseeing this?
There appear to be at least seven grant recipients for 2008:
"Under Our Skin
TTC is involved with the national distributions of the first feature-length documentary that reveals the untold story of Lyme disease. Under Our Skin investigates the shocking human, medical and political dimensions of this disease and was accepted to the prestigious Tribeca Film Festival, Berkshire International Film Festival and Silver Docs Festival. TTC has entered into this strategic partnership because this film has the potential to reach hundreds of thousands of people and it will further TTC's vision of education and awareness of the physical, emotional and social effects of Lyme disease.
"Cheryl Koopman, Ph.D.
Standford University in Stanford, CA
This research project will focus on treatment studies for various classes of Lyme patients. It is unique because it includes subjects that have a clinical diagnosis of Lyme disease but have tested negative using standard criteria. These types of patients are often excluded from Lyme disease research. This study will determine if these types of patients require treatment approaches different from today's conventions.
"This research is critical because Lyme disease is notorious for false negatives, resulting in patients who are told they do not need treatment. In reality, these patients are sick and deserve a treatment approach tailored to their needs.
"Eva Sapi, Ph.D.
University of New Haven in West Haven, CT
One study aims to identify whether or not deer ticks carry nematodes (microscopic worms) in order to develop more focused treatment for patients infected by tick bites. The second study explores whether Borrelia burgdorferi, the bacterial agent of Lyme disease, is capable of forming a complex covering called biofilm and if this biofilm increases its resistance to antibiotic treatment.
"Alan MacDonald, M.D.
St. Catherine of Siena Medical Center in Smithtown, NY
This study will explore if a Borrelia burgdorferi infection is the cause of neurodegenerative diseases, such as Alzheimer's disease. It will also seek to discover the role of biofilms in Borrelia infections.
"Raphael B. Stricker, M.D.
San Francisco, CA
This study focuses on reviewing the effectiveness of IV antibiotic treatment for Lyme disease. In studying various doses given at different intervals, doctors will be able to determine the best course of treatment for patients requiring antibiotics. This study is the one of the first-ever analyses of the safety and efficacy of true long-term IV antibiotic therapy for neurologic Lyme disease.
"Lyme Literacy Programs for Doctors and Patients
National
TTC also allocates funds for public relations efforts, support groups and educational conferences focused on Lyme disease, projects that increase awareness and further education of this devastating disease. TTC is proud to continue the Physicians Training Program, which provides medical practitioners the opportunity to study with a Lyme-literate health care professional. Through this experience, participants develop the skills necessary to properly diagnose and treat Lyme disease. The Lyme Educational Awareness Development Series (LEADS) was created by TTC to enable community members to host their own educational event on Lyme disease and raise money for a cause that has meaning to them.
"Note: Several other grants are pending approval."
_______________________________________________________
While I am delighted to see Turn the Corner backing so much research, I do have some questions regarding a couple of studies.
The most troubling is this one:
"Cheryl Koopman, Ph.D.
Standford University in Stanford, CA
This research project will focus on treatment studies for various classes of Lyme patients. It is unique because it includes subjects that have a clinical diagnosis of Lyme disease but have tested negative using standard criteria. These types of patients are often excluded from Lyme disease research. This study will determine if these types of patients require treatment approaches different from today's conventions."
What concerns me is the fact that Lyme disease does share so many symptoms with so many other diseases ... and we've proven here, at LE, that there are more than enough potentially chronic, "Lyme-like" illnesses to go around. So, if this doctor is only studying subjects who have solely tested negative for Lyme, how on earth does this researcher expect to substantiate any of her findings? Is she simply going to assume the medical community is going to respect a clinical diagnosis in all of these cases? Is she going to go through the rigorous testing required to ensure that these subjects do not, in fact, have something other than Lyme?
And then, forgive my bias, but this one concerns me, as well:
"Raphael B. Stricker, M.D.
San Francisco, CA
This study focuses on reviewing the effectiveness of IV antibiotic treatment for Lyme disease. In studying various doses given at different intervals, doctors will be able to determine the best course of treatment for patients requiring antibiotics. This study is the one of the first-ever analyses of the safety and efficacy of true long-term IV antibiotic therapy for neurologic Lyme disease."
Will this be an actual double-blind trial? Or will it just be a group case study of all of his existing patients? Where will the checks and balances be placed, to ensure there is no room for personal bias? Will anyone else (i.e. someone who has never had result validation issues in the past) be overseeing this?