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» LymeNet Flash » Questions and Discussion » General Support » Disgraceful Invitation to Leading Denialist to Address LDA Conference! (Page 2)

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Author Topic: Disgraceful Invitation to Leading Denialist to Address LDA Conference!
TNT
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quote:
Originally posted by Tincup:
Not sure why you keep asking patients in a chat room about the details of organizing a conference they have no knowledge about, i.e. beating a dead horse.

If you are sincere and really need to know the behind the scenes workings...

1. Become a LDA volunteer and learn more of the behind the scenes actions as you contribute your time to their efforts.

2. When you send in your conference registration form and fees also send in your questions at that time.

3. Contact the Louisville KY Transit Authority and ask them the same question, which makes as much sense as continuing to ask people here who obviously don't know.

Since you probably won't become an LDA volunteer, and aren't going to the conference anyhow, and people here don't know the answer, why not lock up this post, as you are fond of doing to other's posts that have been worn out?

Huh???

I really don't understand why sincere questions and concerns are being snubbed.....by people who are supposed to be the advocates!

[confused]

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Robin123
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TC, I'm sorry you feel rubbed the wrong way here. I think this thread is important because the issue is important, regarding who gets invited to present at Lyme conferences and why. However, I will take your advice and contact the LDA directly.

Btw, I am usually not the one locking up posts here.

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duncan
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Putting the question out there as to the logic behind an invite for a certain speaker shouldn't be a big deal.

You say it's their conference to invite whomever they wish. That is true. As a consumer, and someone who is considering attending this conference, I, too, have rights. I can ask for information to help support my decision on whether to shell out $'s, and whether to recommend the event to others, etc.

Condescending to forum members simply because you disagree with their stance is unfortunate. No one is "pestering" or "griping". Some are asking relevant questions and expressing reasonable concerns.

To be honest, if I were to approach either the LDA or Columbia asking about the choice of a speaker, and I got the sense that they viewed my concerns as "bothering" or "hounding" them, I can assure you, they would not get my business, nor would I feel they were my advocates if they felt so disparagingly of my worries.

Personally, I have offered to help LDA, but I got no response. That was a little surprising as I made a living putting together conferences and writing press releases and brochures. Regardless, I assume they have a full house of qualified event planners, and had no need for me.

I have also reached out to Columbia in the past and only been met with silence. That was disappointing, although not necessarily a predictor as to what would happen if I contacted them again.

All I am saying is it may not be as easy to go to the mountain and walk away with a satisfying answer. And someone knowledgeable of LDA/Columbia plans may read this forum and see it and speak up. Or we can speculate, and through conjecture reach our own conclusions should no answers be forthcoming. Hopefully it is a non-issue, and LDA/Columbia will volunteer an explanation.

But why anyone would get all worked up because a group of patients may not agree with the selection of a speaker is beyond me. It does NOT stand as an indictment against the history of the LDA's or Columbia's advocacy efforts. It MAY reflect a bad choice on their part for this event. If that proves true, we might point that out and ask them to be more careful in the future - and move on. Why would we have the temerity to point that out? Because we have been victims long enough, and when we begin shooting ourselves in the foot, it may be prudent to speak out against the practice.

That is the nature of the conference model. It is not static. It will change based on the needs of its consumer base. The members of this Forum represent a part of that base. As such, their concerns have merit, and carry influence - and should not only be voiced, but be heard.

[ 08-21-2015, 06:54 AM: Message edited by: duncan ]

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momindeep
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duncan says, "Because we have been victims long enough and when we begin shooting ourselves in the foot, it may be prudent to speak out against the practice."

Perfectly written.

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Robin123
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Hi everyone - hopefully we can stay peaceful here as we move forward. I have emailed both Pat Smith and Dr F***** asking what's going on with the invitation to this speaker.

[ 08-23-2015, 12:38 AM: Message edited by: Lou B ]

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Eight Legs Bad
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I have no idea if this post will appear or not. In the last few days, virtually every computer/internet connection I have used to post to/access Lymenet has suddenly stopped being able to access this forum, one by one,( though I'm perfectly able to access other websites from them).

I gave the details of one to staff here and they kindly agreed to sort it out. However I am not near that connection at the moment, so have tried another one which I've used only a few days ago,a and could not access this forum/


At the moment, the LymeNet pages on the pc I'm using right now say both "you are not logged in" AND "you are already logged in". Very interesting.

If this message is successfully posted, I will post what I had intended to write.

Elena Cook

--------------------
Justice will be ours.

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Robin123
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Hi Elena - your post shows up.

What, both logged in and not logged in? Kinda like my results for my original Lyme test - both positive and negative.

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Eight Legs Bad
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OK, it appears (for now, anyway) that my post did arrive.

So here's what I wanted to say.

Dr ****** , just like Allen Steere, Gary Wormser, Tim Brooks and nearly ALL the major denialists at the moment, is in FAVOUR of using the C6 Elisa to rule out Lyme Disease.

I consider that an absolute disgrace, considering the wealth of evidence that ALL the serology is useless for ruling out Lyme.

The reasons for seronegativity are legion and I'm not going to list them all here - in any case most of you are familiar with them.

Now I would like you all to read the below, a quote from Dr ******, very brazenly explaining his views in an interview published on the site of Linda Nee, formerly of Unum Insurance and currently a consultant to patients contesting health insurance disputes:

"TFL
What diagnostic test(s) do you rely upon mostly? Do you foresee any new tests in the pipeline?

******
I favor the C6 ELISA as the best screening test as it is an inexpensive and highly reproducible test that, as demonstrated by our research at Columbia, is also one of the most sensitive of tests while still being highly specific.

It is not perfect, as people can have Lyme disease but test negative, but if the test is positive, you can be nearly certain that you have been exposed to the agent of Lyme disease.

The other test that I regularly rely on is the Western Blot as it provides an expanded profile of the antibody reactivity against the Lyme organism."

(boldface mine)

Source of the above quote:
https://lindanee.wordpress.com/2010/12/02/ask-the-doc-interview-with-lyme-expert-dr-*****-******/

That quote ALONE (which I've only recently learned of) proves beyond any doubt that the Stratfor Strategy is at work here.

Dr ******, who many many years ago wrote some good papers on Lyme, has sunk to the lowest depths of treachery by taking his "co-operation" with the Steerites so seriously, his position on testing has now evolved to a point where it's almost INDISTINGUISHABLE from the Denialists'.

While ****** tries to convince the gullible in the UK and US Lyme community that Tim Brooks is being "won over" to our side, and is somehow going to help the victims of chronic Lyme he has been persecuting, the truth is precisely the opposite - ******[/] has been won over to the Denialists' side - TOTALLY.

His very comfortable salary and prestigious post at Columbia - [i]funded by LDA and all the Lyme patients who donated money to them
- likely have been "sweeteners" helping to persuade him along the way.

I am going to reiterate this because it's so important for those unfamiliar with the C6 to know:

The C6 Elisa is the first tier of the 2-tier method used here in the UK.

We have an APPALLING detection rate of Lyme.(see my stats above)

Dr Brooks and his puppets in Lyme Disease Action have invited Dr ****** to the UK. What will he tell us? That the Elisa in use in our country, though "not perfect", is "the best screen".

Shame on you Dr ******!

We should be picketing not just Brooks in USA, but ****** when he comes (again) to the UK!


Elena

[ 08-23-2015, 12:42 AM: Message edited by: Lou B ]

--------------------
Justice will be ours.

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Robin123
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Thanks for your input, Elena.

I'd like to remind everyone here that as we go forward, please stick to the issues and do not attack posters as we get through this together.

So I take it, Elena, that the C6 test that is being used is a standard one and not a recently "improved" one, if you know? In other words, there wouldn't have been new research done on it that someone could be reporting on?

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duncan
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I am not a huge ****** fan, but him saying he likes the C6 and WB is not the same as saying he agrees with the 2T.

C6 does not equate to conventional ELISA in the US. They are distinct

Moreover, it is pretty much accepted in the US that the utility of the C6 may be restricted to acute cases. That means it should not be employed as a screen outside of any case lasting longer than 60 days or so, if I am not mistaken.

****** may like the WB to see if specific bands light up, say one or two, as the Chinese do, and as some European agencies do. I do not know if that is what he believes, I am just saying because someone thinks there is a utility to the WB does not by any stretch mean they subscribe to the 2T.

[ 08-23-2015, 12:43 AM: Message edited by: Lou B ]

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Lou B
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I have removed all name references to an LLMD mentioned many times in this Topic thread as it is a violation of the LymeNet rules.

A lot of the discussion here has degraded to bashing, speculation and projecting ... none of this is productive, therefore I am CLOSING this Topic thread. Robin has written to the appropriate individuals and when or if she gets an answer, this Topic thread can be reopened and the information posted.

Thanks and take care,

--------------------
Lou B
 -

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