NIH Study

pmerv_at_direcway.com
Date: 01/03/05 

Date: 3 Jan 2005 12:36:50 -0800

I am torn between a wish to provide information and a disinclination to
feed the shark, but the recent "discussion" has sent me back to my
files to reread some of the documents I saved from my sojourn on the
NIH advisory "panel." It is perhaps too bad that NIH didn't invite A.
Weisman to be on the panel instead of me - perhaps he could have
prevented the inevitable from occurring.

This first one is dated 9/27/01. Needless to say, the website Clinical
Alert still stands today. And before A. Weisman can denounce my efforts
further, may I suggest that he use his connections to the White House
to obtain a meeting with President Bush and the HHS director, so we can
really start to move forward significantly.

Phillip J. Baker, Ph.D.
Program Officer,
Lyme Disease and Vector-Borne/Zoonotic Bacterial Infections Programs,
Bacteriology and Mycology Branch
Division of Microbiology & Infectious Diseases
National Institute of Allergy & Infectious Diseases
National Institutes of Health
6700-B Rockledge Dr., MSC7630, Room 3114
Bethesda, MD 20892-7630
(Bethesda, MD 20817 for overnight mail)
Telephone: (301) 435-2855 (direct line)
(301) 496-7728 (branch line)
FAX: (301) 402-2508
E-mail: pb26o@nih.gov <mailto:pb26o@nih.gov>

Dear Phil:

Since the advisory committee meeting is not to be held for another 3
months, in the interim I request that NIH and NIAID alter their
headlines to reflect more accurately the content of the NEMC study.
They currently read:

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

We all - you, the researchers, and the patient community - 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. I have
had reports that this is happening.

I suggest "Chronic Lyme Disease Study Shows 3 Months of Antibiotic
Treatment Inadequate" as an alternative. I would like to see this
change made before the end of the week.

Thank you for your attention to this important matter.
Sincerely,

Phyllis Mervine

Relevant Pages

  • Posttreatment Chronic Lyme Disease?
    ... symptoms that persisted after antibiotic treatment". ... with Posttreatment Chronic Lyme Disease. ... In a comparison of 95 patients with systemic symptoms that persisted ...
    (sci.med.diseases.lyme)
  • Re: Posttreatment Chronic Lyme Disease?
    ... > symptoms that persisted after antibiotic treatment". ... > A Case-Control Study to Examine HLA Haplotype Associations in Patients ... > with Posttreatment Chronic Lyme Disease. ...
    (sci.med.diseases.lyme)