Peggy McCann, Back in Action Health Education Services Ltd.
17 November 2006
Thank you for publishing Daniel Cameron's review on the Kempler clinical trials of lyme disease.
The new IDSA guidelines are based on VERY selective research studies such as Kempler's paper. They conveniently and/or deliberately ignored over 18,000 conflicting articles and research studies published on Medline.
I am very upset by the guideline's arrogant dismissal of patients who don’t get better in the time span and with the dose of antibiotics they deem appropriate. So those unfortunate enough to continue suffering multiple symptoms that don’t conform to their blue-print, are left without hope for getting their life back.
Do you have any idea how awful that scenario is to patients and their families? Or to the family physicians who are told to treat no further, even though their patient is improving but still ill? To Lyme literate doctors and researchers who are either ignored or threatened with sanctions against their practice?
What is going on? Why?
If all doctors follow these guidelines(which reflect conclusions drawn from Kempler's extremely biased study) we will soon see a catastrophic rise in people with irreversible and lifelong neurological and physical symptoms that could have been prevented or at least, the damage minimized and controlled.
Long-term antibiotics may be necessary and I for one will gladly suffer any antibiotic “risk” to get my life back again.
Competing interests
None
NIH Headline Still Stands - Long Enough?
Phyllis Mervine, California Lyme Disease Association
17 November 2006
Five years after the original flawed description of the New England Medical Center [aka Klempner] clinical trial was posted on NIH websites, thanks are due to Dr. Cameron for providing compelling evidence why it should be changed to “Chronic Lyme Disease Study Shows 3 Months of Antibiotic Treatment Inadequate.”
As one of the patient representatives on the Advisory Panel for the NIH Clinical Trials, I so requested our NIH Lyme program officer Phil Baker in September 2001. Referring to other Panel members who had discussed the limited applicability of this treatment trial, I wrote: “We all know that the NEMC study was not designed to prove, could not prove and did not prove what your current headline suggests that it did prove. Patients are already being affected by the biased reporting of the study results. It would be a serious ethical lapse to allow the biased headline to remain unaltered while doctors and insurance companies use it to justify denials of treatment to seriously ill patients.”
Dr. Baker did not reply and the headline still stands. Five years later patients are still being denied treatment on this basis. Have we suffered enough yet?
NIH News Release: Chronic Lyme Disease Symptoms Not Helped by Intensive Antibiotic Treatment, 12 June 2001
http://www.nih.gov/news/pr/jun2001/niaid-12.htm
NIH NIAID: Clinical Alert: Chronic Lyme Disease Symptoms Not Helped by Intensive Antibiotic Treatment, 12 Jun 01
http://www.nlm.nih.gov/databases/alerts/lyme.html
Competing interests
I have no competing interests.
Thanks for publishing the exellent article, Generalizability in two clinical trials of Lyme disease
Marisa Battilana, California Lyme Disease Association
17 November 2006
Thanks you for publishing Dr. Cameron's exellent article, Generalizability in two clinical trials of Lyme disease.
In my nearly two years as a volunteer in the Lyme community, I have met over 2,000 people who either have been personally affected by late stage Lyme disease or who know someone who has. The majority of the folks affected benefited greatly from extended treatment with antibiotics, most for more than just a few months. Many found out the hard way that they needed more than short term treatment: when taken off antibiotics, they relapsed within a short time. And, when they resumed treatment, they saw significant improvement.
Articles like Dr. Cameron's are long overdue. Thank you.
Marisa Battilana
Competing interests
None declared
Klemper's Biased Judgement
Stanley Gage, OST Associates
17 November 2006
Klemper, in extrapolating the results of his study, argues in light of his results, that a 90 day antibiotic treatment does not provide any noticalbe improvement in patient health and, therefore, extended antibiotic treatment is of no value.
The conclusion fails to take notice of the fact that an equally vaild argument based on this study outcome would be that a 90 day antibiotic treatment is insufficient to provide any improvement in patient health and that longer duration antibiotic treament may be necesary to reduce or eliminate the efects of desseminatd Lyme.
The real upshot of the issue of the results as published is to question that they were published at all. Publishing bad science is worse than publishing nothing. In the case of the Klemper article the author/researcher obviously approaced the issue with the hypothesis that desseminated or chroninc Lyme does not exist. By fabricating a poorly constructed experiment and then deriving biased and incomplete conclusions and extensions of those conclusion he does the medical and scientific community a significant disservice.
It is unclear in the information presented if the original Klemper study was peer reviewed prior to publication but it is clear that such poorly conducted research does not belong in the respected journals of medical literature.
Chronic Lyme Disease Daniel Cameron Study
17 November 2006
Thank you for publishing Daniel Cameron's review on the Kempler clinical trials of lyme disease.
The new IDSA guidelines are based on VERY selective research studies such as Kempler's paper. They conveniently and/or deliberately ignored over 18,000 conflicting articles and research studies published on Medline.
I am very upset by the guideline's arrogant dismissal of patients who don’t get better in the time span and with the dose of antibiotics they deem appropriate. So those unfortunate enough to continue suffering multiple symptoms that don’t conform to their blue-print, are left without hope for getting their life back.
Do you have any idea how awful that scenario is to patients and their families? Or to the family physicians who are told to treat no further, even though their patient is improving but still ill? To Lyme literate doctors and researchers who are either ignored or threatened with sanctions against their practice?
What is going on? Why?
If all doctors follow these guidelines(which reflect conclusions drawn from Kempler's extremely biased study) we will soon see a catastrophic rise in people with irreversible and lifelong neurological and physical symptoms that could have been prevented or at least, the damage minimized and controlled.
Long-term antibiotics may be necessary and I for one will gladly suffer any antibiotic “risk” to get my life back again.
Competing interests
None
NIH Headline Still Stands - Long Enough?
17 November 2006
Five years after the original flawed description of the New England Medical Center [aka Klempner] clinical trial was posted on NIH websites, thanks are due to Dr. Cameron for providing compelling evidence why it should be changed to “Chronic Lyme Disease Study Shows 3 Months of Antibiotic Treatment Inadequate.”
As one of the patient representatives on the Advisory Panel for the NIH Clinical Trials, I so requested our NIH Lyme program officer Phil Baker in September 2001. Referring to other Panel members who had discussed the limited applicability of this treatment trial, I wrote: “We all know that the NEMC study was not designed to prove, could not prove and did not prove what your current headline suggests that it did prove. Patients are already being affected by the biased reporting of the study results. It would be a serious ethical lapse to allow the biased headline to remain unaltered while doctors and insurance companies use it to justify denials of treatment to seriously ill patients.”
Dr. Baker did not reply and the headline still stands. Five years later patients are still being denied treatment on this basis. Have we suffered enough yet?
NIH News Release: Chronic Lyme Disease Symptoms Not Helped by Intensive Antibiotic Treatment, 12 June 2001
http://www.nih.gov/news/pr/jun2001/niaid-12.htm
NIH NIAID: Clinical Alert: Chronic Lyme Disease Symptoms Not Helped by Intensive Antibiotic Treatment, 12 Jun 01
http://www.nlm.nih.gov/databases/alerts/lyme.html
Competing interests
I have no competing interests.
Thanks for publishing the exellent article, Generalizability in two clinical trials of Lyme disease
17 November 2006
Thanks you for publishing Dr. Cameron's exellent article, Generalizability in two clinical trials of Lyme disease.
In my nearly two years as a volunteer in the Lyme community, I have met over 2,000 people who either have been personally affected by late stage Lyme disease or who know someone who has. The majority of the folks affected benefited greatly from extended treatment with antibiotics, most for more than just a few months. Many found out the hard way that they needed more than short term treatment: when taken off antibiotics, they relapsed within a short time. And, when they resumed treatment, they saw significant improvement.
Articles like Dr. Cameron's are long overdue. Thank you.
Marisa Battilana
Competing interests
None declared
Klemper's Biased Judgement
17 November 2006
Klemper, in extrapolating the results of his study, argues in light of his results, that a 90 day antibiotic treatment does not provide any noticalbe improvement in patient health and, therefore, extended antibiotic treatment is of no value.
The conclusion fails to take notice of the fact that an equally vaild argument based on this study outcome would be that a 90 day antibiotic treatment is insufficient to provide any improvement in patient health and that longer duration antibiotic treament may be necesary to reduce or eliminate the efects of desseminatd Lyme.
The real upshot of the issue of the results as published is to question that they were published at all. Publishing bad science is worse than publishing nothing. In the case of the Klemper article the author/researcher obviously approaced the issue with the hypothesis that desseminated or chroninc Lyme does not exist. By fabricating a poorly constructed experiment and then deriving biased and incomplete conclusions and extensions of those conclusion he does the medical and scientific community a significant disservice.
It is unclear in the information presented if the original Klemper study was peer reviewed prior to publication but it is clear that such poorly conducted research does not belong in the respected journals of medical literature.
Competing interests
None