so this is virginia's house rep frank wolf speaking and giving nj rep frank pallone holy heck for pallone boxing up our lyme bill NOT scheduling it so it's talked about by subcommittee.
those of us here heard this last year; 6 months ago when it happened; we're so proud of WOLF and his comments.
to newbies, LISTEN TO THIS; i would not have known by subject what this was about and would have been helpful showing frank wolf's name there.
frank wolf rocks! hoping his rage carries over to othes there to give our bill a fair chance.
Posted by Dekrator48 (Member # 18239) on :
I enjoyed listening to that, thanks! And thanks to Congressman Frank Wolf!!!!!
Posted by sutherngrl (Member # 16270) on :
I wrote to him and thanked him for fighting for us. Please do the same. He is our hero!
Posted by bettyg (Member # 6147) on :
southerngal, do you have his email handy where you can post for us all?
DEFINITELY we all need to thank him for getting actively and visibly upset about what we all go thru!! big thanks.
Posted by JaimieB (Member # 19076) on :
This is the email I got back from our Gov... March 17, 2009
Dear Jaimie,
Thank you for writing to me and sharing your concerns. I appreciate hearing from you.
Because of the nature of your inquiry, the Tennessee Department of Health would be the most appropriate agency within state government to address it. Therefore, I have forwarded your message to the Commissioner for review and response.
Again, thank you for taking the time to write. I hope to hear from you again on other matters of importance to you.
So this is beyond him???????
Posted by lakes592 (Member # 18905) on :
This is awesome and a breath of fresh air!! I'm writing to all of them the good and the bad. When I'm sick in bed like last week I'll write some more and make some more phone calls. Somedays it is all that I ca do but at least I feel I am doing something. I am also sending the link to family and friends thanks or sharing it! In fact I think I will send it to all my reps as well.
Take Care, Ann
Posted by Tincup (Member # 5829) on :
JamieB...
Concerning your letter to the Gov and their response of sending your complaint to the health department AKA- fox in charge of guarding the hen house......
It is called "passing the duck".
Or is that passing the BUCK?
For those who haven't beaten their heads against a wall for years trying to get 'er done...
A little hint from folks who have brick impressions showing on their foreheads from the repeated beatings....
The health departments ARE NOT YOUR FRIEND.
BTW- VERY FEW legislators are either. That is why we don't nilly willy do things. You could be feeding yourself to the gators if you don't know what is going on... AND.. feeding the rest of us to the gators too.
After many many years of asking myself WHY aren't the health departments doing something or helping with this problem...
It didn't make sense.. they are suppose to CARE about people and HELP them.
Well... eventually, Miss Optimist learned the truth... after MANY wasted years waiting for the health department to do the right thing and stringing us along.
The health departments are involved in this so deep their ears smell like swamp muck.
The Governor appoints the health dept heads... called head duck heads.
He wants to believe they are doing a good job... and the Gov will defend his duck heads as to not heap bad on their own administration... be they right or wrong.
Not EVERY Governor is this way... or health department...
But then in waltzes the IDSA and beats them to death with their stupid stick so they keep their mouth shut.
I've watched totally uninformed state employees learn from our education... and a few months later... they spout the IDSA almost word for word.. like Pallone does in that video.
You can't tell me the IDSA doesn't have him where they want him. Cause I don't think anyone in that high of a position could be that stupid on their own.
They've been force fed the IDSA bull... and parrot it almost word for word.
So sad. And the above is MY opinion.
Posted by JaimieB (Member # 19076) on :
Wowsers, I am begining to think I am stuck between a rock and hard place. There is so much to learn and of course I am still new at this.
I am just trying to make people aware.
Ok, Tin please tell me because my brain isnt as sharp as it used to be. How would I be feeding myself and /or others to the Gators?
I read that several times but still cannot full comprehend what the hec is going on. Thanks!
*edited to say* I feel like I may be causing more harm than help and thats the last thing I want. I am now going to drink a nother cup of coffee.
Posted by Tincup (Member # 5829) on :
JamieB...
You ARE the wizard in the land of oz. I love it!!!
NEVER stop fighting and going for what is right.
I'm just trying to save folks that care about the cause and who dare step up to the plate to help, the frustration and the nightmare that many of the "oldies" have been through by sharing what has worked and what hasn't.
Example- I've been asked and told people that waiting for the health department to follow through and help you do positive things won't work. Don't waste your time.
They still had "faith" in the health department anyway and didn't listen... which is their right to do... and which is exactly what we did when we didn't know better in the past because health departments are suppose to HELP people.
But because of they didn't listen...
A big program was scheduled with them as a guest speaker. They never showed up, never bothered to call, etc.
That is not a good example... but I am not awake enough to think right now.. sorry!
Let's say many.. if not all of the health departments have shown us NO help and have worked against us over the years.
As for legislators... and this also involves the health department too...
Example- In Maryland a legislator put in a bill to bring awareness to Lyme disease. Great bill. BUT..
One line in the bill said they would be sending the "latest" treatment guidelines to all doctors in the state.
If that had been done.. it would have meant all doctors were sent the IDSA guidleines from the "state" in an official manner.
It would have sanctioned the IDSA guidelines as "the standard of care". That would have stopped treatment for patients.
It would put all doctors in fear of losing their license by treating more than 3 weeks. AND.. if that passed in Maryland.. all states would be at risk of being next.
Patients and group leaders said they would support the bill when contacted (and we never knew anything about the bill- had NOTHING to do with it- as usual it was dumped in our laps after the fact- until AFTER it was introduced).
BUT.. in order for us to support it...
There had to be an amendment to fix that line about the guidelines.
The bill sponsor agreed and pretended to be our "friend" ... and even helped draft an amendment to fix it. All was promised to be fine. I still have the sponsors message recorded that was left on my machine saying so.
But behind closed doors... the sponsor... arm in arm with the health department/Hopkins/IDSA (one in the same in Maryland)... told the rest of the committee not to put in our amendment... that WE didn't want it... blah blah blah.
So the committee passed the bill out of the committee and within hours the sponsor had it on the floor and up for a vote and 100 percent of the House voted to pass it.
It passed because we educated all the legislators (and nearly dropped from working so hard) and we pushed the bill to help everyone in the state.
They (regular legislators on the floor) didn't realize the amendment wasn't in there when they voted quickly to pass it. In my opinion, that was nothing more than...
Sneaky nasty trash.
The DC group, the LDA and our Maryland groups were lied to, just out and out lied to. We had all worked together for months to get it passed... and we were all told the amendment would be in there and we were all duped.
The happy ending...
We focused immediately on contacting the Senate. We worked ourselves to death telling them NOT to pass the bill because of the danger it would be to patients.
We had to fight the health department/Hopkins/IDSA.. set up special meetings where the LDA and Maryland patients attended to explain what was going on... etc.
Thank goodness patients across the USA joined us in this fight and wrote and called, etc. Without them we couldn't have done it.
Had the DC group, the LDA and all our Maryland groups not worked together... we would have been sunk.
But the Senators listened and also caught the sponsor in a lie. She tried to tell the Senate committee that "only one small group" had objections to the bill. She didn't know we had a national call out for help... I guess she just thought we would slither away? Not likely.
And while she was insisting to the Senate folks in the committee that it was "only one small group" that had an objection to the bill .. she didn't know the Senate members were sitting there with stacks and stacks of letters and had received tons of calls against the bill.
They let her repeat that "only one small group" line several times.. then they busted her by holding up a stack of letters and telling her the bad news.
The bill was killed.
Now.. I hope that shows a decent example of knowing who you are dealing with and being able to trust them?
I WANT you to keep going. I'd beg you to.
Just please save yourself frustration.. and as YOU are doing.. which I love to see....
And try to get what you can from the old folks... and learn from all of our past mistakes.
THEN we can all move forward faster.
Bless you for trying. Never stop.
Posted by sutherngrl (Member # 16270) on :
Bettyg, when you click on the video, I believe you are on his website. Or you can look up the house of representatives and find all representative there.
Posted by mushroomman06 (Member # 13088) on :
Reading The Bakers Dozen & The Lunatic Fridge, by P. J. Langhoff, has helped me see what a brick wall and solid iron camp we our up aganist!
I have only started to read this book, when done and I research places Langhoff has offered to be researched I just wonder how anti I will be!
And thats not anti LYME!
Posted by Tincup (Member # 5829) on :
Hey mush...
For those of us who can't see small print.. anything or your impressions that you can share from the book would be great.
NO!
I don't mean write a book report, silly.. just a few lines if you could manage it.
THANKS!
Posted by bettyg (Member # 6147) on :
tincup,
as i come across things in pj's book, i'll type up some notes as i read it as it covers SO MUCH stuff.
Posted by mushroomman06 (Member # 13088) on :
tincup
I will pass things on from the book. I have read so much that I wanted to remember but can't!
I am starting chapter 7. From here on out I am going to high lite items I would like to relay on to others.
Today my mine is not in the go back and find stage and the small print is tuff.
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