posted                

allie, would you edit your post by clicking on paper/pencil and add this sentence at the top of your post here.

Bettyg has broken this up for neuro lymies and can be found on page 2; thanks allie! xox

quote:

---

Originally posted by Allie:


Not to rain on the parade, but just got this from a colleague who is an IDSA member.


This is the link:



Dear IDSA Member:


As you may know, in November 2006 the Attorney General of Connecticut launched an antitrust investigation of the Society's clinical practice guidelines on Lyme disease.


The investigation reflects the controversy surrounding long-term antibiotic therapy, which IDSA does not recommend for this condition.


We are pleased to inform you that IDSA has reached an agreement with the Connecticut Attorney General that ends the investigation of the Society and its volunteer panel members and reaffirms the ability of IDSA to develop practice guidelines based on the best available evidence and widely accepted standards of care.


Our guidelines remain in place and continue to represent the best that science currently has to offer patients.


By reaching this agreement with the Attorney General, IDSA keeps issues related to the prevention, diagnosis, and treatment of Lyme disease in a medical forum where they belong, and out of a courtroom.


The agreement calls for a special review of the guidelines, detailed below, which we hope will quell the unfortunate controversy around the treatment of Lyme disease and ensure that patients receive advice and treatment based on the best available medical evidence.


There may be some negative press coverage in the short term, but we are working to make sure it is as fair as possible.
*********************


(Our press release is available online at http://www.idsociety.org/Content.aspx?id=11182 .)


In the long run, we expect this will blow over.


We firmly believe it is in the best interests of the Society, its volunteer panel members, and our patients to have this protracted, distracting, and expensive investigation behind us-particularly because the agreement itself is very favorable to IDSA.


Under the terms of the agreement, IDSA will convene a special review panel to conduct a comprehensive and up-to-date evaluation of the scientific literature, in order to determine whether the 2006 guidelines should be revised or updated.


As part of the review process, interested individuals will be invited to submit relevant information, and a public hearing will be held to receive additional information.


The review panel will consider all the evidence and make recommendations regarding whether the Lyme disease guidelines should be revised.


If the panel recommends revisions, they will be carried out in accordance with our normal procedures overseen by the IDSA Standards and Practice Guidelines Committee.


The agreement does not set a precedent for future guidelines.


From a medical perspective, we are confident that the 2006 guidelines are sound.


The Connecticut Attorney General's investigation of our guidelines questioned our process but never questioned the medical evidence.


Like many medical associations, IDSA is continuously working to improve the process by which we develop guidelines.


The panel members had no relevant conflicts of interest.


Recognizing the controversy surrounding Lyme disease, the panel carefully considered all information provided by other organizations and individuals.


Furthermore, the guidelines (like all IDSA guidelines) were subjected to a rigorous, multi-level review and approval process.


We stand by our 2006 guidelines panel, and we believe they reached the right conclusions.
*****************************************


While we were prepared to defend in court any claim that the Connecticut Attorney General might bring and were confident that we ultimately would have prevailed, we concluded that ending the investigation at this stage is in the best interests of IDSA, our members, and our patients.


The agreement recognizes that there was no legal wrongdoing.


It protects the Society and the volunteer members of the guidelines panel from the burdens of a protracted legal proceeding.


It avoids the uncertainty and expense of a continued investigation, which would likely cost IDSA hundreds of thousands of dollars more than the considerable resources already expended.


The Connecticut Attorney General is not imposing any fines or penalties and does not have a role in IDSA guidelines panels, on Lyme disease or any other topic.


Moreover, those who seek to undermine the credibility of our guidelines will no longer be able to use the stigmatizing phrase, "under investigation."


It is important to note that IDSA's current guidelines remain in place and our advice to physicians and patients remains the same.


We are confident that this special review will serve as a further endorsement of our evidence-based process to determine the best treatment for those who suffer from Lyme disease.


We sincerely hope it will bring a degree of closure to this controversy for our patients as well as for the Society, although we will be prepared to continue our education and advocacy efforts in this area.


We will weather whatever media storm may break over the announcement of the agreement.


In the end, our mission is to make patients well and help them avoid ineffective and potentially harmful treatments.


IDSA's guidelines on Lyme disease represent the best advice that medicine currently has to offer.
**********************************************


Please feel free to contact IDSA with any questions or concerns at [email protected].


Sincerely yours,



Donald Poretz, MD, FIDSA
President, Infectious Diseases Society of America

---

boy, talk about a HOG WASH STINKY REPORT! P U !! betty

we're going to have a field day with REBUTTALS to their letter and press release; let's go for it.


SEND THANK YOU EMAILS TO BLUMENTHAL!!!
**************************************

contact your local tv news seeing if they will have coverage and provide Blumenthal's report to them.


i agree; fax blumenthal's report to:

PALLONE, KENNEDY, AND DINGLE, etc.


HALLELEUH!! this was a LONG time coming, but glorious news!!! yippee!

IP: Logged | 

posted                      

quote:

---

Originally posted by smadavid:

IDSA:
Any proposed changes to the guidelines would require a supermajority vote of 75 percent of the panel.

---

Posts: 96222 | From Texas | Registered: Feb 2001  |  IP: Logged | 

posted                      

quote:

---

Originally posted by Lymetoo:

quote:

---

Originally posted by smadavid:

IDSA:
Any proposed changes to the guidelines would require a supermajority vote of 75 percent of the panel.

---

NOT 75% of the membership

---

Posts: 12 | From East Windsor, CT | Registered: Mar 2008  |  IP: Logged | 

posted                

quote:

---

Originally posted by canbravelyme:

What does it mean that there will be live video feed over the internet? Will that translate into us, the patients with this critical disease, having our say?

---

IP: Logged | 

posted                   

quote:

---

Originally posted by sparkle7:
This is good news but it will take a long time before it trickles down into treatment protocols for those who have insurance.

What about those who have lost everything & have no insurance? Or for people who don't want to take endless courses of antibiotics.

This decision doesn't really help me all that much. I don't think they will be reporting this on CNN or making the public any more aware of the dangers of Lyme.

The best thing would be to try to make the public more aware of Lyme to prevent people from going through all of this - to begin with.

In my opinion we need more accurate testing & greater public awareness, as well as, better treatment options.

---

Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005  |  IP: Logged |