Hi, I am posting this just to encourage you to step up and let NIH know how they should be spending research monies.
Here are the Topics and my responses.
NIH seeks comments on any or all of, but not limited to, the following topics in TBD research:
1. Significant research gaps and/or barriers not identified in the framework above
Me: Research on why and how the transmitted disease can remain and be persistent after all presently recommended treatment.
Disallow research focused on trying to prove that chronic Lyme disease and co-infections do not exist.
Do some research on in what order treating co-infections leads to best results. See if eradication of one confection first can make treating the others easier.
2. Resources required or lacking that may be critical to advancing the TBD research priorities
Me: Use the resources that are provided by the input of physicians who have broad experience in the treatment of tick-borne disease and especially in co-infections, which can be several at a time.
Guide more funds toward useful research on how the diseases affect the host and the results and failures of treatments given.
Get more patient input.
Much microbiology research takes tons of money and has micro-results.
Acknowledge and support legitimate and very applicable research in testing and treatment that comes from other countries.
3. Emerging scientific advances or techniques in basic, diagnostic, prevention, or therapeutic research that may accelerate NIH research priorities detailed in the framework above
Me: Much basic applied medical science has not been adequately employed.
Get more input from first responders (ER and urgencare facilities as well as primary physicians) as well as physicians who have been willing to support and care for patients who have not responded to basic treatment, or who have relapses.
Acknowledge that you are dealing with INFECTIONS and that until you have tests to prove that those infections have been wiped out in the host, you will not have a solution or a cure.
Emerging scientific advances or techniques will probably have more than enough people applying for research funds.
Be careful and selective when awarding funds. The "good old boys" have had their turn. We need newly educated and inquisitive minds.
4. Other Comments
Me: EDUCATE! EDUCATE! EDUCATE!
Spend money to be sure that medical schools, physicians, laboratories, researchers, teachers, adults and children as well veterinarians, national and state health departments have the true and reliable knowledge to serve and protect everyone who is at risk.
Be willing to see that Tick-borne diseases are an epidemic spreading across the world.
Give Tick-borne diseases the recognition needed as well as the funds focused on making a difference.
Quit promoting and over-funding vaccines that will always be too limited and too expensive to prevent these infections from continuing to spread everywhere.
They can be shiny and irresistible, and provide great income for the manufacturers, but little help to people with the diseases or with undiagnosed tick-bites.
Show some care and sympathy for people who suffer from these diseases and their care-givers and doctors.
Posted by Ann-Ohio (Member # 44364) on :
Tomorrow, Mar. 13th, is your last day to take on the NIH and their research funding for tick-borne diseases!
I had a hard time comprehending the meaning of the questions asked on this survey until I read your responses and then it made sense.
Thanks Ann-Ohio.
Come on folks, take 5 minutes and make your voices heard. Today's the last day.
Posted by Ann-Ohio (Member # 44364) on :
Thanks, Bonnie!
Posted by TX Lyme Mom (Member # 3162) on :
Excellent ideas for responses, Ann-OH. Your example of comments "primes the pump" for me and makes it easier for me to formulate my own ideas.
I had attempted to do this last week, but too many interruptions made it impossible for me to finish. Then, my computer locked up and I lost what I'd already done because I had to reboot my computer.
I thought I'd already missed the deadline, so your timely reminder is very, very much appreciated.