NEWS: How CDC, NIH & IDSA work together to discredit idea of chronic Lyme
Poughkeepsie Journal: Emails reveal cozy relationship between feds and IDSA, as well as efforts to exclude “Lyme loonies.”
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From the Poughkeepsie Journal:
Chronic Lyme disease: Is it real?
Officials say no, but some patients say yes – and demand a say
Written by Mary Beth Pfeiffer, Poughkeepsie Journal, May 19, 2013
It was a throwaway line in an email, as the nation’s head of research funding for Lyme disease neared retirement from the National Institutes of Health.
“I will certainly miss all of you people – the scientists,” Phillip Baker, the Lyme program officer, wrote a colleague in 2007 at the U.S. Centers for Disease Control and Prevention, “but not,” he said, “the Lyme loonies.”
Baker’s appraisal – culled from 3,000 pages of documents obtained under the Freedom of Information Act and provided to the Poughkeepsie Journal — summed up in two words what physicians and scientists who challenge official policies on Lyme disease are up against.
The so-called Lyme wars – one of the most vigorous and, both sides agree, vicious debates in medicine today – is a lopsided struggle to influence national policy on Lyme disease and, more specifically, to prevail on a single question. Can it be chronic?
Click here to read the rest of the article.
Related articles:
Lyme emails request took five years; officials blame scope and fee waiver.
View the CDC FOIA emails here, by clicking on the red text.
I don’t want the readers to miss that you can access the actual emails sent between the IDSA guidelines authors and CDC/NIH officials by clicking inside the red boxes on the following site: http://pojonews.co/189JjW3
I found the emails to be very revealing. There clearly is a cozy relationship between the two groups. It is also clear that they helped and supported each other in stopping federal legislation which would give patient advocates a voice in Lyme disease research grants, in trying to discredit and remove the ILADS treatment guidelines from the National Guidelines Clearing House, and in their efforts to discredit ILADS treating physicians.
The obvious disdain for patient advocates is clear in many of the emails as well. The authors of many of the emails keep referring to the term evidence-based medicine. In their distain for patients and chronic Lyme treating physicians, it is clear that they don’t really understand the meaning of the word. Evidence-based medicine must include the clinical experience of the doctor and the preferences of the patients.
Also in terms of evidence-based medicine and peer review, the IDSA Lyme treatment guidelines are published in the IDSA’s own journal. Half of the papers cited in the treatment guidelines, are written by the guideline authors. I have no doubt that the guidelines authors reviewed each each other’s grant applications and papers before publication as well. This is a small, insular club. Thus the weaknesses and flaws in logic found in these papers have never been truly examined independently of the IDSA. This was true of the 2009 IDSA Lyme guidelines review process as well.
Thus many the strong assertions and recommendations of the IDSA and CDC in Lyme diagnosis and treatment are in truth NOT supported by strong evidence. The science is still evolving. In true evidence based medicine, when the science is unclear or is still evolving, more weight is given to the treating physician’s clinical experience and patient preferences.
The content of these emails make it clear that the NIH and CDC cannot reform themselves from within and I would recommend that all Lyme patients ask their Senators and Representatives for an investigation of these matters.
KarlaL
Having worked as a Scientific Liaison with BIG PHARMA during the height of AIDES research, and again with the IDSA “Key Opinion Leaders”, as they are referred to, it’s all very simple really, “follow the money!”
If you want to make some accelerated progress, I mean leaps and bounds, you’ll need a BIG PHARMA on your side or “covert information with a high $ value”, something that a strong legal team can threaten to expose. Like, Haitian prisons selling plasma to U.S. drug companies for factor 8 production. Something like that. I’m sure that there is “something”, you need to find it.
BTW, I have Lyme and co-infections, 3 years now.
Robin M.
Thanks for the honesty in posting this article. The Lyme community appreciates your dedication and work.