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» LymeNet Flash » Questions and Discussion » Activism » IDSA hired professional PR firm!

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Author Topic: IDSA hired professional PR firm!
Anneke
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Hello Lyme community/friends,

I've done some sleuthing tonight re: the IDSA'S formal response to the Att. Gen. investigation/announcement.

In their response, there are two emails provided to take potential individual responses to the announcement. One of them is:

[email protected]

[email protected]

The IDSA's president has the following email: [email protected]

I googled the "pcipr.com". It stands for a professional PR company called: Public Communications Inc.

This is their website front page:

Public Communications Inc. (PCI) provides thoughtful, strategic counsel to our clients, whether we're dealing with the most serious and complex crisis or the splashiest of events - and we've been doing so for 44 years.

Our job is to guard our clients' reputations, to be truthtellers and trusted counselors, and to find the right way for clients to communicate what they have to say so it is heard and believed.

Our clients trust us and stay with us, and our business has grown primarily through referrals and positive word of mouth. More than half of our clients have been with us 10 years or more; 15 and 20+ year relationships are common (and valued).

Our size and the depth of our staff enable us to manage the most sophisticated of client assignments while allowing us to move quickly, be flexible and change course when it makes sense to do so.

We love what we do.


Pretty interesting huh?

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Aniek
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We know they aren't stupid, just cunning. It would have been stupid of them not to hire a firm.

--------------------
"When there is pain, there are no words." - Toni Morrison

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Lymen
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It is however stupid that we didn't hire PR firm.

When it gets to LDA that they do not have a clue about playing media game?

Each time the story is the same. They produced a very good press release that ... NOBODY picks up on.

Well, sometimes perhaps a smalltime paper that covers two city blocks.
I wouldn't call it a breakthrough.


PLEASE DON'T DELETE THIS POST BECAUSE I'AM REALLY ****ED. SO MANY PEOPLE WORK ON THE ISSUE AND NOW IT LOOKS LIKE IDSA ARE THE HEROES AND WE ARE ANNOYING THE PUBLIC AND THE GOOD GUYS FROM IDSA.

[ 03. May 2008, 09:16 AM: Message edited by: Lymen ]

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canbravelyme
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We're preempting ourselves by thinking that we can't afford to hire a PR firm. If we all found $100, we could hire a lot of PR. And it would pay in the long run.

Perhaps the time is Right now. Who knows which is one of the leading PR firms in the US. Does Saatchi do PR?

--------------------
For medical advice related to Lyme disease, please see an ILADS physician.

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Lymen
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I am afraid that for Blumenthal/IDSA story is too late to hire PR help. These would be wasted money at this time.

PR company needs to be hired ahead of the event, not after.

To get something positive from the whole situation that is bad enough it may be perhaps useful to create PR funds right now for some future events.

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docjen
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I absolutely agree. Some things require professional help: public relations and lobbying are among those. If IDSA is a well-organized army, we are fighting back with a rag-tag volunteer militia.
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canbravelyme
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Yes: a firm that will help with strategy. Perhaps we could discuss this with Pat Smith.

--------------------
For medical advice related to Lyme disease, please see an ILADS physician.

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Lymen
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The funds for PR will find us when we get a clear sense where we are going. Thinking that we have no money for these activities is simply WRONG.

But since Pat Smith was consistently reluctant to PR activity in the past shouldn't we create some division of LDA with certain independence that would take care of the public relations?
Still full access to all information would be crucial.

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docjen
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UP UP UP...because I think this is a really important idea.

I disagree that it is too late to use a PR strategy for the IDSA/Blumenthal issue. There was no way to organize in advance for that in any case, since I don't think there was much warning that the decision was going to be reached. This will be an ongoing "story" as the IDSA puts together its new panel and carries out discussions over the next year. Getting ahead of the "spin game" at this point seems really important.

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sometimesdilly
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i agree more and better organized press would be good.

i definitely don't agree that the IDSA looks like the good guy here.

no amount of PR they can throw at this can or will make the reality of having to settle with Blumenthal go away.

the interests in the thick of this battle know up from down, and right now they know the ISDA is DOWN. think rats on sinking ships.

This next year while a panel is convened and holds hearings, etc. will be so crucial.

i really hope that all of us who are following this story will take the time to think through and act on what WE can do in that year to help tip the balance.

it is OUR collective opportunity and responsibility to ACT now.

LDA and many others brought us this far to have this chance- this was a TREMENDOUS victory, and it took a heck of a lot of work to get it done.

IT IS OUR TURN NOW.

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jamescase20
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GUYS TELL LDA, NO pr firm. What you do is this, look at what idsa did, they hired this pr firm, bluh bluh. WE the LDA represent the PEOPLE, the sick sorry *** lyme victims, bring a few with you to the mic, the ones in wheel chairs and leaning sideways. Then bring one thats fully recovered on long term abx, WE the LDA DONT use pr firms, WE DONT HAVE TOO, because we dont waste our money like isda does. Thats how you do it.
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jamescase20
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LET the victims be the speaker, EVEN the ONLY speaker. Find a victim to give the speech.
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jamescase20
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and THATS THE ONLY WAY TO KILL THE ISDA PR STANCE.
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Tracy9
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quote:
Originally posted by Lymen:
It is however stupid that we didn't hire PR firm.

When it gets to LDA that they do not have a clue about playing media game?

Each time the story is the same. They produced a very good press release that ... NOBODY picks up on.

Well, sometimes perhaps a smalltime paper that covers two city blocks.
I wouldn't call it a breakthrough.


PLEASE DON'T DELETE THIS POST BECAUSE I'AM REALLY ****ED. SO MANY PEOPLE WORK ON THE ISSUE AND NOW IT LOOKS LIKE IDSA ARE THE HEROES AND WE ARE ANNOYING THE PUBLIC AND THE GOOD GUYS FROM IDSA.

Hey, I'm confused as to why you said nobody picks up on it; not true. You yourself posted under the thread that says the story has been picked up by 153 sources; and now that number is 229.

This is getting MAJOR press coverage, MSNBC, Forbes, and much more.

Why be so negative and make a comment you clearly know is not true, as evidenced by your other post?

--------------------
NO PM; CONTACT: [email protected]

13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG.

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bettyg
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anneke, here's to our no. 1 SLEUTH! GREAT FIND! [group hug] [kiss]
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luvdogs
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Anneke - That is funny - I am cutting and pasting what I wrote earlier on the CT investigation case - now in acitivsm:

"I think that Lyme activists / LDA etc needs to put more money into media relations.

I spent the whole day yesterday emailing and faxing press releases to every paper in RI, and what came out was an IDSA slanted version, seemingly against us - or belittling us - and you gotta know that they spend a fortune on their media coverage.

We need to have money raised just for those purposes so we can get the real information out to the public.

This is ridiculous what they have done! I am very disturbed by the article that came out after what I sent them. It is a minimized version of the APs article, clearly slanted.

I sent them the press release from Blumenthal's office."

Exactly what I was thinking! What jerks.

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Lymen
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Tracy,
All what is published (well, almost all) is a slanted IDSA version.
We are portraited as some loons, while the corrupted party looks noble.

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Lymen
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Hiring PR firm now will be less effective money wise because timing is wrong. Results will likely be disappointing.

I am afraid that LDA would later say "Well, we have always been saying that it was a waste of resources, now you have a proof. We have tried PR and it didn't work"

To do effective job a PR firm needs a few weeks preparation time BEFORE the event takes place.
Also you need real NEWS. PR will use THE NEWS to create a message (our message) and using their channels will spread it out.

Announcement of Blumenthal was NEWS, but it won't be NEWS in couple of weeks. So this particular NEWS is over.

If something big is coming up, than it is time to look for a good PR firm.


Anyway I am willing to contribute some of my $$ towards these kind of goals for the future.

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Tracy9
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I don't think the latest are slanted IDSA versions at all, they look very much in our favor, including the title of the stories.

--------------------
NO PM; CONTACT: [email protected]

13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG.

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Lymen
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Continue your research, Tracy and find out what % of coverage is IDSA slanted and what is on our side.

Soon you will find that well over 90% is IDSA slanted.

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cs
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I agree that we need to hire PR people, it is the only way we can keep up with the misinformation from the IDSA. Maybe a special fund for it, I know I would be more than willing to donate to something like that.
-karen

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docjen
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In thinking about this further, I wanted to share an experience that I had while working for a health issue related non-profit, and we used a PR firm. I think there may be a feeling that PR is used for coming up with slogans and jingles, and then writing press releases, but it is not that at all.

Things the PR firm helped us with:
* used their own contacts to get our message in well-placed editorial pages, including Wall Street Journal and New York Times
* used their own contacts to get our message into high profile mass distribution sources such as Newsweek
* got speakers on our topic invited to speak at key health and policy conferences in the best time slots, likely to get the most coverage
* got meetings for us with highly-placed officials in both political parties, and helped get elected officials to sign on to our cause

I think these are all really crucial aspects of being a well-organized effort. I think at this stage, it is time to move beyond grass-roots, and move to the next level while this issue is gaining momentum.

And a good PR firm does not just react to breaking news, they CREATE a story for you, so it is NOT too late.

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cs
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That is exactly what we need Docjen, yes, it should have been done sooner, but we should be getting on this asap. PR firms have resources that we just wouldn't have access to otherwise, and I would also think that a good PR firm could move pretty fast on something when necessary. Might even be able to help with the bills in congress, they should have some contacts that we don't have ourselves.
-karen

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cs
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Hiring a PR firm is not so much about putting together a message, as we have a very compelling message - it is about packaging that message and getting it published and seen by those who need to see it - all about connections, which is EXACTLY what we need.

Why hasn't this been done sooner? Is it lack of funds? I'm sure people would be willing to donate toward something like this, especially now - with all the newsworthy stuff that is going on, this is the time to do it.
-karen

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cs
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Bumping this, I'm also thinking that with how desperately everyone is trying to get the attention of Oprah and Ellen and the like, this is something else that a PR firm could help with, no?
-karen

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bettyg
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karen,

may i make a suggestion to you and as a newbie?

on left hand side, click on LDA name, and it will bring up their online site.

contact me...lda pres. pat smith; send her a BRIEF email and ask the status on PR firm and/or why none has been hired.


then post the answer here.

BUT BEFORE DOING THIS, use search feature on their site, and do inquiry on PR FIRMS; perhaps it is shown there ALREADY, and wait until THURSDAY TO EMAIL HER.


remember, pat will be at the LYME PROTEST!!!!
*********************************************

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Anneke
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Just want to say in the midst of this discussion:

THANK whatever you believe for Pat Smith!!! She has single handedly been the face and force behind our activism. I don't know how she does it. There is NOTHING like a Mother/father defending/protecting their child.

I'm sure the idea of hiring PR firm has come up before.

Honestly, I just don't think this alone is what is going to turn the tide for our community. I think it's either going to be successful, class action lawsuits, or they are going to get charged for possible criminal behavior. We all know that they are criminals, but I wonder if there is enough real dirt that is actually illegal?

I also think it's pretty AMAZING what the Lyme community HAS DONE well!! Raising the funds for the Columbia research center was a huge victory! Hopefully more studies will be coming out of there that will reveal clinically helpful data - whatever the results.

I sure wish there was a standardized, completely accurate test for Borrelia and its cousins. If we had that, the debate would look completely different.

Anneke

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docjen
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Anneke-

I just wanted to add, "here here" for your kudos to Pat Smith. She (and LDA) have done a remarkable job raising the issue of lyme disease, using sharp elbows to get a seat at the proverbial table, and dealing with all the detractors and criticism along the way. It is a tough job, but not a thankless one, because we all appreciate her work. And I know that I for one have supported LDA financially for the important job they are doing.

I don't believe that any healthy discussion about ways to advance the cause/issue of lyme disease is meant to detract from the work that Pat or LDA has done. And I also don't think that any one thing, including using the help of a professional PR firm, is going to bring resolution to the issue. But I think an occasional reassessment of tactics in a changing landscape of policy and policymakers is healthy.

As I mentioned, I headed up a similar effort in a non-profit, and we had great success using the talented folks at the PR firm. I don't think cold calling and emailing would have gotten us on the OpEd page of New York Times and Wall Street Journal, or an interview on the PBS News Hour about our issue. It was really remarkable.

Again, these are constructive suggestions as we all have a stake in the outcome. Thanks.

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cs
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For the life of me I can't find a search function on the LDA site Bettyg, that could very well be my lyme brain at work though. Is there information on their site about this subject that I cannot find?

And I totally agree with everything docjen has to say, Pat Smith has done a wonderful job, and this discussion is in no way trying to detract from that.

It just seems that a successful army needs to be able to adapt to changing situations, and the current situation is calling for some professional PR help on our side.

No, this won't change anything on it's own, but it is a crucial piece of the equation, and to ignore it is only going to do us harm in light of what we are up against.

Successful PR could not only help us with this immediate situation regarding the guidelines, and also in getting the bills passed, but also in getting balanced information out to the public, which in turn would benefit us by making lyme a more important issue to the general public.

Right now most people who are not affected think that lyme is not that serious, if they knew differently, then they would be much more concerned with getting something done.

Educating the general public, with some well placed articles and news stories could definitely help get a larger public push for change.

Unfortunately the fact is that people don't really care unless something affects them personally, but once they realize that it could affect them if nothing is done, then they will take notice and start asking questions of our policymakers.

It is time to address this issue, we owe it to ourselves.
-karen

[ 06. May 2008, 04:47 PM: Message edited by: cs ]

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cs
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I can't find her e-mail on the site - probably lyme brain again - can someone pm it to me? Thanks!
-karen

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bettyg
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cs/karen,

karen, please go back up and edit your long, continuous block of text; we neuro lymies can't read it, and i'm sure you have some good stuff in there but we have to SOB, SCROLL ON BY!

click paper/pencil to break it all up please! we thank you!!
*************************

below is pat's email that is published on her website.

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cs
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Great, I can't do anything right around here. Can't think straight enough to figure out where to break up my text, so I guess I will just do it sentence by sentence, but I bet that will be wrong also.

Just gonna go crawl in the closet and cry, I am done.
-k

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cs
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Ok, heard back from LDA, they do have a PR firm, which seems to indicate that they need a better PR firm than the one they are using. The IDSA's PR firm is running circles around ours.
-k

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bettyg
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karen, great job breaking that up so i could read it all.


good, lda wrote you back!

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