posted
Great, this is a relief to have some marching orders. I will withdraw my petition idea in favor of whatever is coming down the pike in that direction.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
Does anyone know whether it is felt that people in other countries (who have a stake in the guidelines too), can write letters? Frequently the CDC and IDSA path is followed by health agencies in other countries. So, patients elsewhere are hurt or helped depending on what course this panel review takes. OK to post on other forums for people outside the U.S.?
Posts: 8430 | From Not available | Registered: Oct 2000
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bettyg
Unregistered
posted
lou, outstanding question!!
tincup, when i saw the most NEWS FLASH, i knew trhis needed to go on almost every CURRENT ACTIVISM POST because you covered many things, and i didn't want things "slipping thru the cracks" causing us MORE WORK that would NOT be needed!
yes, at times, i can be everywhere, and thank you God for the COPY/PASTE FEATURE !!! a real timesaver!
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again, this breaks up lorraine johnson's 2 posts for us neuro folks!
please join us for OUR LYME CAUSE!! thanks all!
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richedie
Frequent Contributor (1K+ posts)
Member # 14689
posted
Does anyone have a sample letter, I could copy and send!?!?
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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TX Lyme Mom
Frequent Contributor (1K+ posts)
Member # 3162
posted
Here's a medical ethicist who might (or might not?) be "neutral" and therefore helpful to our cause. It's hard to tell from what he wrote in the first article below about Blumenthal and the IDSA, but if you look at an earlier article of his (second link, below), then it looks as if he might actually be someone who could be helpful to us.
Maybe someone would like to contact him to see what he thinks about the exclusionary criteria of the new IDSA panel. Maybe he could be persuaded to write a letter to the IDSA with a copy to Blumenthal in behalf of ILADS docs who are automatically excluded from the IDSA's new review panel because they earn >$10K per year from treating Lyme patients.
PS - I'm editing to add his postal address, copied from his second article (link above), in case anyone cares to try to enlist his help in questioning the unfair exclusionary criteria of the new IDSA panelists. Herbert L. Fred, MD, MACP, 8181 Fannin St., Suite 316, Houston, TX 77054
I am putting the pen to the paper as we speak. It's nice to know what to do and I appreciate all the help.
I think it's nice that you and others are trying to organize this for us all.
Elizabeth
-------------------- aka: Lyme Warrior
In order to do "real" science, you have to have a "real" conversation with nature.
Well Behaved Women Rarely Make History!
"Just Demand your Rights" Posts: 869 | From nor - cal | Registered: Apr 2008
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northstar
Frequent Contributor (1K+ posts)
Member # 7911
posted
Tx Lyme Mom, Those were excellent articles...I just finished the second one, and am not sure if I should cry/then throw up, or throw up/then cry. North.
Posts: 1331 | From hither and yonder | Registered: Sep 2005
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posted
Interesting that one TX ethicist could produce such poor results in his role with the IDSA panel selection, but another one sees what the real issues are. We got the wrong ethicist?
Posts: 8430 | From Not available | Registered: Oct 2000
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bettyg
Unregistered
posted
quoting texaslyme...just separating name/address so it stands out more ... thx tex! xox
PS - I'm editing to add his postal address, copied from his second article (link above), in case anyone cares to try to enlist his help in questioning the unfair exclusionary criteria of the new IDSA panelists.
Herbert L. Fred, MD, MACP, 8181 Fannin St., Suite 316, Houston, TX 77054
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posted
Question: During the public comment period, can we reasonably count on ILADS docs to be submitting all the relevant scientific data and studies that support our position? I know I will be sending the IDSA panel a letter, hopefully with some scientific references I have gleaned from Pam's book, etc. But will ILADS be bombarding them with evidence, incl peer-reviewed studies? Will they personally appear before the panel at public hearing to present our arguments? Getting a little nervous here....
-------------------- Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that. Posts: 765 | From nw ct | Registered: Sep 2008
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bettyg
Unregistered
posted
great question! perhaps tincup knows.
paul, copy your question and go to ILADS site, and send it as a question to them directly!
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posted
OK, I emailed the question to ILADS. Waiting for a response.
-------------------- Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that. Posts: 765 | From nw ct | Registered: Sep 2008
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posted
up
Posts: 8430 | From Not available | Registered: Oct 2000
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
"Question: During the public comment period, can we reasonably count on ILADS docs to be submitting all the relevant scientific data and studies that support our position?"
Writing those letters?
Posts: 8430 | From Not available | Registered: Oct 2000
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bettyg
Unregistered
posted
yes, that's my tomorrow assignment!
got my taxes finished up and to accountant...
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bettyg
Unregistered
posted
using amanda's post in medical, i got my tomorrow assignment just done and sent!
sent to IDSA AND CONN. ATTORNEY GENERAL ... ****************************************
Jennifer and Richard,
I'm writing to each of you to advise you of my personal feelings on the new committee of 14 to review 06 IDSA LYME GUIDELINES for "conflicts of interest".
Treating physicians, who were entirely excluded from the panel, should be included on the panel.
Someone added $10,000 as maximum to be earned TREATING lyme; this was NOT on original agreement! It was done by IDSA to eliminate our chronic LLMDS, lyme literate mds!
These physicians understand what works and doesn't work in the field. They may also be required to comply with guidelines that they had no voice in developing.
By excluding treating physicians, the panel is also assuring that patient concerns will not be represented.
7 out of remaining 9 panelists are IDSA members. This is not a balanced panel.
Dr. Arthur Weinstein, who has written Lyme disease guidelines in the past and who is known to have a bias against patients, should never have been selected for the panel.
Dr. Carol Baker, who was a past IDSA president and who developed the guidelines in the Redbook, should not be on the panel.
Physicians with known biases against treating patients with Lyme disease should not be on the panel.
I feel our chronic LLMDS should be in EQUAL REPRESENTATION among the new panel of 14; this has NOT occurred, and I'm very upset.
I've had chronic lyme for 39 years; 34.5 yrs. MISDIAGNOSED by 40-50 drs!
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