Post by jeezld on Oct 22, 2007 5:42:36 GMT -8
I have just finished rereading Polly Murray's "The Widening Circle." Thank you itsybitsy for challenging my earlier post.
In case anyone doesn't know this, Murray instigated and was involved with the Yale Investigation from the beginning and provided them with much of the files on the original cluster case studies she had collected in the years leading up to the investigation, including her own family's extensive medical and symptom histories.
Murray noted at the time when the findings were originally made public -- and in the following years -- that the research team at Yale seemed to purposely downplay the severity of the infection and how totally disabling it could be. She questioned Steere about this and his response was something along the lines that more follow up research needed to be done. Years passed and conferences and symposiums on Lyme were held which she attended and still she felt that much was being ignored or pushed under the rug when it came to the gravity and extent of symptoms.
I wonder why they clearly did downplay so much of the severity of the disease when they had the clean slate of "discovering an unknown disease" and could look at the many manifestations repeatedly present in multiple subjects?
From the very beginning this disease was medically and publicly minimized and marginalized by a major medical and educational institution. WHY?
First it was determined by Steere to be "self-limiting," then when the bacteria was suspected and then discovered, to be "easily cured" with a short course of antibiotics. They had the evidence right before their eyes that this was simply NOT TRUE in a significant number of subjects. Yet this is what they promoted and continue to promote.
Which also leads me to ask what is really bothering me now: WHY is there such a void when it comes to long-term studies of the earliest known Lyme patients followed up with over time. Since there was such a media, medical and scientific blitz concerning the Yale Investigation and the final identification of the Bb spirochete, why has real long-term follow up not been actively done and published concerning the impact of both treated and untreated infection over the last thirty years? And why hasn't it been done by multiple research teams in places like other universities, NIH, CDC and even endemic state health departments??? If it has been done, where is public access to the research and results?
In a Google search I found a 1994 letter from Steere sent to the original study patients, requesting them to participate in a long-term study (this being initiated nearly 20 years after the original investigation!). You will love this quote from Steere's letter:
"It has become increasingly apparent that the Lyme disease spirochete, Borrelia burgdorferi, may persist in some patients for years. Of particular concern, recent studies have shown that the spirochete may persist in the nervous system in a small percentage of patients and may cause chronic neurologic involvement."
www2.lymenet.org/domino/law.nsf/2515f1188ab499f485256519000670a8/b61269ef9a3afa4a052565400011edec?OpenDocument
Here is the result of this study, which unbelievably is the ONLY long-term follow up study done that I found, and it only tracks a handful of individuals infected for 10 to 20 years:
www.journals.uchicago.edu/cgi-bin/resolve?id=doi:10.1086/318082
This just makes no sense to me medically or scientifically. These huge vacuums and voids in both the extent of the disease's description early on AND in the long-term health impact research of infected individuals of a "newly discovered infectious disease." Something just smells incredibly fishy to me...
In case anyone doesn't know this, Murray instigated and was involved with the Yale Investigation from the beginning and provided them with much of the files on the original cluster case studies she had collected in the years leading up to the investigation, including her own family's extensive medical and symptom histories.
Murray noted at the time when the findings were originally made public -- and in the following years -- that the research team at Yale seemed to purposely downplay the severity of the infection and how totally disabling it could be. She questioned Steere about this and his response was something along the lines that more follow up research needed to be done. Years passed and conferences and symposiums on Lyme were held which she attended and still she felt that much was being ignored or pushed under the rug when it came to the gravity and extent of symptoms.
I wonder why they clearly did downplay so much of the severity of the disease when they had the clean slate of "discovering an unknown disease" and could look at the many manifestations repeatedly present in multiple subjects?
From the very beginning this disease was medically and publicly minimized and marginalized by a major medical and educational institution. WHY?
First it was determined by Steere to be "self-limiting," then when the bacteria was suspected and then discovered, to be "easily cured" with a short course of antibiotics. They had the evidence right before their eyes that this was simply NOT TRUE in a significant number of subjects. Yet this is what they promoted and continue to promote.
Which also leads me to ask what is really bothering me now: WHY is there such a void when it comes to long-term studies of the earliest known Lyme patients followed up with over time. Since there was such a media, medical and scientific blitz concerning the Yale Investigation and the final identification of the Bb spirochete, why has real long-term follow up not been actively done and published concerning the impact of both treated and untreated infection over the last thirty years? And why hasn't it been done by multiple research teams in places like other universities, NIH, CDC and even endemic state health departments??? If it has been done, where is public access to the research and results?
In a Google search I found a 1994 letter from Steere sent to the original study patients, requesting them to participate in a long-term study (this being initiated nearly 20 years after the original investigation!). You will love this quote from Steere's letter:
"It has become increasingly apparent that the Lyme disease spirochete, Borrelia burgdorferi, may persist in some patients for years. Of particular concern, recent studies have shown that the spirochete may persist in the nervous system in a small percentage of patients and may cause chronic neurologic involvement."
www2.lymenet.org/domino/law.nsf/2515f1188ab499f485256519000670a8/b61269ef9a3afa4a052565400011edec?OpenDocument
Here is the result of this study, which unbelievably is the ONLY long-term follow up study done that I found, and it only tracks a handful of individuals infected for 10 to 20 years:
www.journals.uchicago.edu/cgi-bin/resolve?id=doi:10.1086/318082
This just makes no sense to me medically or scientifically. These huge vacuums and voids in both the extent of the disease's description early on AND in the long-term health impact research of infected individuals of a "newly discovered infectious disease." Something just smells incredibly fishy to me...
