Re: NIH Intramural Study

From: GregGerber (gregorygerber_at_hotmail.com)
Date: 01/12/05 

Date: 12 Jan 2005 07:32:04 -0800

the perspective of the intramural group is that Lyme is autoimmune
--that is the big in-house push at NIH, based at least in part on
Klempner's unpublished data from the prior study, showing that the
seronegative group (aka the rash patients who failed standard treatment
very early in disease) have a particular autoimmune marker --DQB0602--
also seen in MS. The PROBLEM is that NIH may be spinning this small
outlier group as characteristic of chronic Lyme when in fact they are
atypical, that is what we need to watch out for. I remain concerned
about the effort to pass the outliers off as typical when they are in
fact atypical. Even if this outlier group does have autoimmune disease
it solves nothing for most chronic Lyme patients, but the spin coming
from NIH could be otherwise if we aren't constant watchdogs over the
language and thrust. This is all taking place inside a black box, and
because the Committee was disbanded we have absolutely no say, control,
or even insight into the details. This is of great concern and I wish
something could be done. GG

Relevant Pages

  • Re: Will the real Charles Adams please stand up.
    ... FYI McSweegan sued ... the NIH on first amenment grounds, ... based on his bitter exchanges with the Forschners. ... The interest in sports and lyme fits. ...
    (sci.med.diseases.lyme)
  • Re: Christine Jennings ends hunger strike
    ... >> on the question of sexual transmission, particularly the CDC, well ... I think that if you look around the world of disease advocacy ... the screws to NIH for more research money. ... spending a single penny to research whether or not Lyme can be sexually ...
    (sci.med.diseases.lyme)
  • Re: Urgent notice on Congressional letter
    ... > Stony Brook got higher score on quality of experiment but Tufts was ... > Lyme if you know what I mean. ... > NIH documents not this report in Lymenet. ... > importnat thing is the review of the proposals written by the ...
    (sci.med.diseases.lyme)
  • Re: NIH Intramural Study
    ... > the perspective of the intramural group is that Lyme is autoimmune ... > outlier group as characteristic of chronic Lyme when in fact they are ... I'm concerned greg not just about outliers being represented as ... And that then evidence of persistent infection that patients in the ...
    (sci.med.diseases.lyme)
  • Re: you really want to be active in the fight for lyme rights?
    ... but tout it as a Foundation for the Cure of Autoimmune ... > Disease and sweep as much under it as possible. ... patents and therapeutic concepts are elsewhere and Yale is not needed. ... I am convinced there can be therapeutics for most chronic Lyme, ...
    (sci.med.diseases.lyme)