Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
gigimac,
This quote concerns me...
"Therefore, I propose that funding for Lyme disease be increased by $200 M per year with 50% of that being devoted to finding a cure to Chronic Lyme disease and related co-infections."
We need to be VERY VERY careful to not ask for funding for the CDC/NIH at this time. Problem is they are already funding Lyme research, but the funding they provide, our tax-payer dollars, is, in my opinion, being wasted on giving it to the IDSA supporters.
One hand feeds the other.
The Worm has taken a huge chunk recently to determine if people with Lyme, after treatment, are any sicker than the general population. We already KNOW they will say "no" because they've already said it in journal articles for years.
Another guy, involved in the studies being used AGAINST us, got a bundle for his "Take a Tick To Lunch" study.
The wording on all petitions and for all proposed bills, and any time legislators are contacted, first must be right, EXACTLY right, and second not cause patients and our doctors more problems, which HAS happened in the past.
I don't know all the answers, but I do know what doesn't work and what can make the situation worse.
And yes, there are other petitions out there, none I feel at this time, that I've seen, are able to protect us from the potential dangers involved in running nilly willy to officials and begging them for help.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Ditto.
Some of these can backfire on lyme patients, big time. Some are intentionally designed to do so by groups that do not have our proper interest at heart.
Some might be well-meaning but naive (not a judgement, it's just such a brutal political situation). One wrong word or any degree of misplaced trust and we can be hurt.
I always want to see what the leading lyme advocacy organizations have to say about any petition or bill. I want to see their support before I will sign anything.
Nearly everything that might be good for lyme - to sign - will go through LymeDisease.org - they frequently have such petitions that have been throughly screened and set up at their site for our easy reading and signing. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Lyme education / advocacy organizations that I trust:
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/