Hi everyone,For those not familiar with the IDSA (Infectious Disease Society of America), they are a private group including most infectious disease doctors. In 2006, the IDSA posted their new Lyme guidelines, basically claiming chronic Lyme does not

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Hi everyone,For those not familiar with the IDSA (Infectious Disease Society of America), they are a private group including most infectious disease doctors. In 2006, the IDSA posted their new Lyme guidelines, basically claiming chronic Lyme does not exist. Within weeks, many/most insurance companies stopped paying for chronic Lyme treatments based on the IDSAs new Lyme guidelines that chronic Lyme does not exist. This left tens of thousands who were being treated by doctors, including LLMDs (Lyme Literate MDs) without any treatment as the cost of treating Lyme with special antibiotics was very expensive. One has to think insurance companies no longer having to pay for expensive Lyme treatments must have been elated.

The then CT, Attorney General, Blumanthal realizing so many now would be without medical treatment because insurance was declining to pay for chronic Lyme medical treatments, opened an investigation into the IDSA and found the 14 member panel that issued the Lyme guidelines has several conflicts of interest, ordered the panel disbanded and a new panel installed. They were to review the original panel's Lyme guidelines and make changes as needed.

This process took 4 years (believe it or not), the public was invited to give input and the best I can recall, part of the criteria for being selected to this new panel was no one person could have profited by more than $10,000 from treating Lyme, thus this meant no LLMDs would qualify to be on this panel. And since LLMDs have the most knowledge about Lyme, they would have no input into the new panel's decision about the Lyme guidelines.

Here is Blumanthal's settlement with the IDSA, but today's story is GREEN type below.

IDSA Lyme Disease Guidelines Flawed and Driven by Conflicts of Interestshttp://www.lymedisease.org/news/lymepolicywonk/15.html

Take care,Jim

Date: Tue, Jan 10, 2012 at 1:49 PMSubject: FW: my article + mIDSA link; dorothy leland's update of idsa's feedback on lyme avalanch of comments!

 

IDSA gives its

response to flood of Facebook postings to CALDA/LYMEDISEASE.ORG, dorothy

leland:

 

http://www.lymedisease.org/news/touchedbylyme/idsaresponse.html

 

08 January, 2012

 

Last week, I

contacted the IDSA's media spokesperson for a reaction to the deluge of

postings on the organization's Facebook page. Here's her response.

 

Last week, the

Infectious Diseases Society of America posted the following question on its

Facebook page.

 

" What would

you like to see from your society in the coming year? " The query

was apparently intended for its own membership.

 

However, the

Facebook page is open to any one, and Lyme patients soon jumped on what they saw as an

opportunity to send the IDSA a collective message.

 

The IDSA Facebook

page has been in existence for a little more than a year.

 

During that time, their

Facebook handler

would periodically

post articles or comments related to different infectious diseases, and

there would be a few " likes " and the occasional comment posted by

the public.

 

 

That changed

dramatically January 4, after the first Lyme comments were posted.

 

As word spread

throughout Facebook, Lyme patients from all over the world started posting comments and

encouraging others to do the same.

 

The

gist of most messages was a protest against the IDSA Lyme guidelines. The

IDSA didn't shut down the page (which many observers thought they would

do).

 

However,

they were obviously watching

the

process closely, since anything deemed " abusive " was deleted

immediately.

 

Even

with many comments deleted, as I write this, there are more than 1900 Lyme

messages posted on the page.

 

 

On Friday, I

contacted the IDSA for a response, and received the following email:

 

Thanks for

reaching out to IDSA for comments on the recent Facebook comment campaign about Lyme

disease in response to the question “What would

you like to see from your society in the coming year?”

 

IDSA is an active,

member-driven society and as such, this question was intended for the 9,000 or so IDSA

member physicians, researchers and healthcare providers

who are concerned about the full range of infectious diseases including drug-resistant

infections, influenza, hepatitis, HIV/AIDS, tuberculosis and other

life-threatening diseases.

 

IDSA absolutely

remains committed to providing the best treatment possible for all

patients, including those diagnosed with Lyme disease.

 

It

is in the best interests of patients that we rely on scientifically valid

medical evidence to inform our treatment guidelines.

 

As

recently confirmed by an independent panel of medical experts, our

Lyme disease guidelines represent the best advice that medicine currently

has to offer.

 

IDSA’s

most recent clinical practice guidelines on Lyme disease remain current.

 

All

of our guidelines, including that for Lyme disease, are reviewed on a

regular basis to determine the need for updating based on any newly

available (and scientifically rigorous) evidence that would warrant a

change.

 

The

IDSA website will indicate when the guideline is being revised or updated,

along with an estimated timeline for completion.

 

Despite

accusations by some to the contrary, it is simply untrue that the panel

members who worked on our Lyme disease guidelines had conflicts of

interest.

 

All

were completely transparent and none of them stood to gain from

recommendations in the guidelines.

 

In

fact, they would have benefited more from recommending long-term (and

expensive) antibiotic treatment

..

For

more than a decade, IDSA has listened to input from physician and

patient advocates from the chronic Lyme community.

 

The

Society has participated in discussion panels in scientific and community

settings, welcomed presentations at our scientific meetings, responded to

hundreds of calls and letters, given hundreds of media interviews and successfully

resolved a legal challenge to our practice guidelines, which resulted in

the decision by a special review panel that the IDSA guidelines are

medically and scientifically valid.

 

 

The

answer, therefore, to whether or not the IDSA will pay attention to the

comments on our Facebook page – and the feelings of patients in general –

is clearly yes.

 

Providing

guidance for good patient care has always been and will continue to be a

cornerstone of our Society’s mission. Relying on science and medical

evidence is the best and safest way to achieve that.

 

Thank

you,

 

Olson

 

Vice

President, Communications

Infectious

Diseases Society of America

 

 

 

Once it became

clear that the IDSA was deleting some of the Facebook comments, a group of Lyme patients started

another Facebook page, called " IDSA Question--All Comments. "

 

On this page, they

copied over comments as they were posted on the IDSA page, managing to save

most of the one's the IDSA deleted.

 

(Though I

understand that a few of them got away before they could be captured.)

 

Read the IDSA

Facebook page here. This is the full posting of all entries, not just Lyme.

 

https://www.facebook.com/pages/The-IDSA-question-all-comments/159928807443124

 

Read the IDSA

Question--All Comments page here.This link is the Lyme entries, these are what we are interested in! ~JimJax

 

https://www.facebook.com/pages/The-IDSA-question-all-comments/159928807443124

 

 

Among other

things, I disagree with the

following

statement by Ms. Olson:

 

" As recently

confirmed by an independent panel of medical experts, our Lyme disease guidelines

represent the best advice that medicine currently has to offer. "

 

I don't believe

that a panel made up of IDSA members (and chosen by the IDSA) can be considered

" independent " of the IDSA.

 

And I don't

believe that a guidelines development process that systematically excludes divergent points of

view can be said to represent the " best advice medicine currently has

to offer. "

 

 

I repeat the

suggestion I wrote in my last blog on this topic:

 

How about a revise

of the IDSA Lyme guidelines, in an open process that allows all

stakeholders a place in the discussion?

Read my previous

blog post here.

 

 

TOUCHED BY LYME is

written by Dorothy Kupcha Leland, LymeDisease.org's VP for Education and

Outreach.

 

Contact her at dleland@....

 

 

bettyg, added

dorothy's above article in full, no copyright shown, and i emphasized.

bg, leader

Subject: Re: [WisconsinLyme] IDSA link

To: WisconsinLyme

Date: Monday, January 9, 2012, 9:40 PM

The IDSA responds to the outpouring on Facebook !

 

Wow, I'm glad the IDSA responded and cleared all this up

!!  I'm absolutely convinced now that their seriously doing all they

can for lymies.

 

 Thanks to Olson from the IDSA for clearing

all this up. Except for one little thing

..............................

 

You first state Lyme Guideline Authors had no conflicts

of interest but then state they would have benefited more if long-term abx

had been recommended ? I thought they had NO conflicts ?

 

Oooooooopppppppssssssiiiieeeeeeeee . You bad PR

person, make booboo !

 

 

Despite accusations by some

to the contrary, it is simply untrue that the panel members who worked on

our Lyme disease guidelines had conflicts of interest.

 

All were completely transparent

and none of them stood to gain from recommendations in the guidelines.

 

In fact, they would have

benefited more from recommending long-term (and expensive) antibiotic

treatment.

 

http://www.lymedisease.org/news/touchedbylyme/idsaresponse.html