Lyme: The Ties that Bind (Poughkeepsie Journal)

Dear Folks,

I don’t want people 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 them to be very revealing. There clearly is a cosy 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 patients 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 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 they reviewed each others papers before publication as well. This is a small, insular club. Thus the weaknesses and flaws in logic found in these papers has never been truly examined independently of the IDSA. This was true of the 2009 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 patients preferences.

It is clear that the the NIH and CDC can not reform themselves from within and I would recommend that all Lyme patients ask their Congressmen for an investigation of these matters.

KarlaL

— In MassachusettsLyme@yahoogroups.com, DKL wrote:
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> Important new Lyme articles
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> Chronic Lyme disease: Is it real?
> http://www.pojonews.co/YSC95G
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> Lyme emails request took five years; officials blame scope and fee waiver
> http://pojonews.co/12mlx58
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> View the CDC FOIA emails here, by clicking on the red text
> http://pojonews.co/189JjW3

 

Category: CDC, Failure of the IDSA, IDSA, NIH · Tags:

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