I received the following notice from LymeDisease.org regarding the National Institute of Health’s Request for Information (RFI): Input on NIH Tickborne Diseases Strategic Plan:
Notice…..
LYMEPOLICYWONK: Take our survey on NIH’s Lyme disease strategic plan
https://www.lymedisease.org/nih-survey-lyme-strategy/
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Here are my comments submitted to the NIH on behalf of the 74,000 individuals signing this petition:
NIH seeks comments on any or all of, but not limited to, the following topics in TBD research:
https://grants.nih.gov/grants/rfi/rfi.cfm?ID=84
Significant research gaps and/or barriers not identified in the framework above
Key Dates
Release Date : February 13, 2019
Response Date : March 13, 2019
In reference to “Barriers to Research” ….
I applaud the list of research priorities identified in this Request for Information but why did it take thirty years to recognize these problems?
Quote from Dr. Willy Burgdorfer: “The controversy in Lyme disease research is a shameful affair. And I say that because the whole thing is politically tainted. Money goes to people who have, for the past 30 years, produced the same thing—nothing. Serology has to be started from scratch with people who don’t know beforehand the results of their research.”
Source:
Prof. Willy Burgdorfer Talks About Lyme Disease
https://www.youtube.com/watch?v=dCnrUmAPcOE
Previous NIH funding for Lyme was under the direction of Edward McSweegan and Philip Baker.
Corrective action:
The NIH should suspend all funding to researchers with a bias against persistent Borrelia infection particularly those who have been named in the Texas racketeering lawsuit who continue to use taxpayer dollars to fund the ongoing racketeering/propaganda scheme.
Court Document:
https://www.dropbox.com/s/18uyrli878ug51m/LymeDisease%20RICO%20Lawsuit.pdf?dl=0
Defendants: (There are many more researchers to be included in this short list)
DR. GARY P. WORMSER
DR. RAYMOND J. DATTWYLER,
DR. EUGENE SHAPIRO
DR. JOHN J. HALPERIN
DR. LEONARD SIGAL
DR. ALLEN STEERE
There needs to be an immediate shutdown of the “open checkbook” handed to Dr. Gary Wormser by the US Centers for Disease Control (Funding: RO1 CK 000152) with his unethical fixation on the acute stage of disease purposely avoiding the advanced stage which hides the horribly disabled.
Complaint filed with the Office of Research Integrity:
There are concerns with the following statement found in this Request for Information:
“The responses will be reviewed by NIH staff, and individual feedback will not be provided to any responder.”
It’s like saying, “Send in your comments but were going to keep doing what we’ve always been doing regardless.”
What the NIH has been involved in all along has to stop!
There are other concerns regarding Barriers to Research relating to the 1980 Bayh–Dole Act or Patent and Trademark Law Amendments Act (United States legislation dealing with intellectual property arising from federal government-funded research) as this act has had a detrimental effect on the way Lyme disease has been handled here in the US; government employees can benefit financially through patents. Is the right decision being made or is the promise of financial gain the driving force? Where is the oversight?
For example: Employees of the U.S. Centers for Disease Control (Theresa Russell and Barbara Johnson) hold patents on metabolomics. (A pipe dream/waste of resources?)
CDC Employee Patent: https://www.google.com/patents/EP2805168A1?cl=en
So will we see real changes at the NIH to end the favoritism in research funding for Lyme or are we going to experience yet another decade of unimaginable pain and suffering?
Other Comments:
A recent case study published in Military Medicine reports a previously healthy cadet found unfit for duty and discharged from active military service as a result of Lyme disease. Lyme has been portrayed as a simple nuisance disease by the defendants named in the Texas racketeering lawsuit so obtaining disability for this infection as a civilian is virtually nonexistent.
Latent Lyme Disease Resulting in Chronic Arthritis and Early Career Termination in a United States Army Officer (Published: 06 March 2019)
CDT Thomas Weiss; CDT Peter Zhu; CDT Hannah White; LTC Matthew Posner; J. Kenneth Wickiser; MAJ Michael A. Washington; LTC Jason Barnhill
https://academic.oup.com/milmed/advance-article/doi/10.1093/milmed/usz026/5370051?searchresult=1
Patient testimony over three decades is describing a disease that is destroying lives, ending careers while leaving the patient in financial ruin so this military case study validates the existing testimony.
An entire medical community along with our public health officials have been brainwashed by this racketeering scheme and there are literally hundreds of thousands if not millions worldwide horribly disabled just as documented for this unfortunate young Second Lieutenant.
As spokesperson for the 74,000 individuals signing the Change.org petition calling for a congressional investigation into the mishandling of Lyme disease here in the United States there is an urgent need to upgrade the level of health threat for Lyme disease.
Individuals who sign the petition are welcome to leave a comment and there are now over 1,100 pages of comments describing exactly what has been published in Military Medicine.
Below is a copy of the PDF comment file for your review: (My personal Dropbox storage area)
https://www.dropbox.com/s/v40pm6wby21o25a/Comments%20March%209%202019.pdf?dl=0
So will we see real changes at the NIH to end the favoritism in research funding for Lyme or are we going to experience yet another decade of unimaginable pain and suffering?
Respectfully submitted,
Carl Tuttle
Lyme Endemic Hudson, NH
Lyme Bumper Stickers (Public Service Announcement)
https://www.ebay.com/itm/123659578861