I used to work for a federal politician as well as many citizen advocacy groups and am still in contact with my former colleagues.
I have been very sick for about a year and just found out it was lyme. Like many on here, I think I've actually had it for much longer.
I had a strange illness several years ago with many lyme symptoms...I was told it was stress.
I got better without knowing what it was (or treatment) the first time, but was reinfected recently and it came back with A VENGEANCE . I could not get out of bed for 2 months and am still suffering severely, although now know what I'm dealing with.
I want to get in touch with those who I know within Washington and healthcare NGOs.
What is a succinct article I can give them?
I know Under Our Skin or Cure Unkown but those are hard to get busy people to read/watch.
I actually haven't read or watched them myself as I didn't think my mind could take any more information...I was so sick I couldn't read my own name...until now.
I'm still unsure of WHY the CDC guidelines and mainstream medical community is so clueless about lyme.
Are they really clueless or is this in their best interest and do people believe/have evidence that they are turning away?
Now that I'm seeing some improvement and can actually think (sort of) I wanted to get cracking with advocacy using the connections I have.
Any ideas on how to do so?
Posts: 71 | From New York, NY | Registered: Aug 2008
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thanks for telling us this and encouraging us to send you what we feel is the CREAM OF THE CROP for understanding our lyme disease plight and lyme disease bills...
"Are they really clueless or is this in their best interest and do people believe/have evidence that they are turning away? "
in my non-medical opinion:
1. they are NOT CLUELESS; they have their heads/other parts buried in the sand hoping we, CHRONIC lyme community, will go away and take NO FOR AN ANSWER!
2. yes, they have been TURNING AWAY EVIDENCE from ILADS using IDSA, infectious drs. info over our llmds!
frank pallone said that on the confrontage with virginia's house rep wolf before they adjourned ..
he'd talked to his INFECTIOUS DR. "NEIGHBORS" ... lyme bill isn't needed. the recorded link of that is in several places and in my LYME VIDEO COLLECTION on top in support!
4...i was thinking of good article, but one i was thinking of was written by lyme patient/journalist and 33 pages in LARGE print found online. at moment, neuro moment ... can't think of name but she went back to beginning of lyme and brought up PLUM ISLAND TOO!
hopefully, TINCUP will come along, and provide you ammunition galore articles!
thanks for asking lor! and using your contacts from your previous non-lyme life.
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Nice to hear you want to help. VERY nice!
SO sorry you were so sick for so long and had the worst of the worst advising you on your diagnosis and lack of treatment.
Hope you are feeling better soon.
I just sent a link to this post to a NY advocate. Hopefully once they return to NY.. in a few days... they will be able to advise you.
In the meantime.. pry is right. The Attorney General's press release would be a good starting point.
You may want to wait to find out what has been and what is being done by the LDA and other advocates... so as not to duplicate efforts, counter the ongoing projects... and/or waste time and your precious energy starting from scratch.