Topic: Unprofessional and disparaging representation of our community and efforts
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
I am the first to admit I can not do certain things.
Example- I am terrible in meetings when trying to communicate the Lyme communities needs to others in power. I KNOW I am not effective... so I always step aside and get those who can do meetings much more effectively to handle those specific tasks.
The LAST thing I want to do is negatively affect anyone's opinions about even one patient, one organization or about one of our doctors in a professional setting.
In my opinion, misrepresenting our science, our mission, our efforts or our goals wouldn't be fair to anyone and would NOT present us as serious people in need of serious attention.
I only wish others were as concerned about the Lyme community and would THINK before they act... and at least TRY to put the good of the patients above their own personal agenda's and their race to climb to the top of the world to toot their own horn.
I found this radio program to be totally unprofessional, inappropriate and disrespectful toward Dr. C, Dr. L, ILADS, Pat Smith, LDA and patients across the country.
In my opinion they all deserve an apology after this show... and a LOT more respect in the future.
September 15, 2008- Tonight's guest will be Dr. Daniel Cameron -- ILADS president on
EDIT- see the post below to get a more direct link to the program.
In my opinion....
It was a disgrace and a poor portrayal of all of our efforts, not to mention a complete reversal coming from the same people crying we all need to "work together"... and then wondering why we aren't.
The ugly comments made about others in the Lyme community were based on inaccurate assumptions rather than facts. No one checked the facts... no one went to the source... no one bothered to consider what this childish, sorry display would do to YOU.. the patient.
The sole mission of this "show" was not one of education or entertaining- as would be expected. It was to discredit others and boost personal agendas.
It also strayed far from the radio station's own stated goal of, "a medium that would bring information and resources to people that would improve their lives, assist in their personal & spiritual journeys and contribute to creating wholeness for the world."
Thankfully, Dr. C, who was invited there as a "special guest", was able to fend off and diffuse the surprise attacks on him, his organization (ILADS) and others in the Lyme community.
And they wonder how.. it was asked at least three times during the show...
How should independent groups present their positions to ILADS?
They are assuming of course that ILADS even cares- after all they are their own professional scientific and medical group and don't NEED the opinions of others (especially patients) to run their organization the way they see fit... but anyway...
Hint- This radio show was certainly NOT the right way to go about presenting anyones position to ILADS, especially if their goal was to be looked upon as being credible... in anyone's eyes.
Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
I made it that far, but the 9-15 show does not show anything re: Dr. C? It looks to be about supplements.
Edited...
Never mind, I started it and can hear it IS about Dr. C. Just so you know...I am not ready to talk to YOU tonight. Posts: 7052 | From Colorado | Registered: Mar 2003
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
That is just lovely.....
BTW, Ms. TinCup you do many, many things very well!
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Melanie... too bad! You got me anyhow. HA!
I didn't see this obviously... before the cal!
Kgg....
I am sorry you have to keep on top of this.. but I do understand the need to. And I am glad you do it. Thank you!!!!
Keep up the good work and effort. It is appreciated.
Hey G...
Glad you think so! But if you'd followed me around for the past two days.. you'd not see any examples of that. HA!
And BTW- I just read a post/reply you made to someone.. and thought how nice you were and how good and accurate it was. I didn't want to say that to you, of course.. cause I know how swollen your head could get with too many compliments.
But you are being noticed and appreciated. Thanks!
posted
I can't listen to these programs with dial-up access, too slow, but I gather TG called in with a question or suggestion that was divisive and unhelpful to the larger cause. This is par for the course as she has been run off several forums for similar behavior. Don't know what can be done about people like this who are loose cannons and causing trouble wherever they go. Maybe Sue should take a more proactive role in screening callers and cutting off those who are over the line.
Posts: 8430 | From Not available | Registered: Oct 2000
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
I have dial-up too, lou. NOT fun.
You said.. "Maybe Sue should take a more proactive role in screening callers and cutting off those who are over the line."
How to say this nicely? Hmmmmmmm...
TG actually wasn't the biggest problem I noted.. as amazing as that sounds. At least not THIS time.
I'll add... the whole show should have the lines cut and NO one should have said a word... including and especially... the hostess.
I almost went in and got a shower curtain to wrap around me as I listened.. as the venom was splashing all over the place the entire time.
The only sane voice was Dr. C... poor thing. What an ambush!
daystar1952
Frequent Contributor (1K+ posts)
Member # 3255
posted
I think what needs to be brought up is that people are becoming very concerned about the lack of any real progress involving the Lyme disease situation. I did hear from good authority that Dr. Cameron was aware of where the conversation might lead.What set off this discussion was the secret briefing which the LDA held. No one was made aware of this briefing. The LDA claims to represent all lyme patients. Well....if this is so, then the LDA needs to ask for the patient community input.
The National Capitol Lyme disease Association has been asking for help and input from everyone around the country....through emails and radio shows and phone calls. We were told all the details.When The National Cap Lyme Group was interacting with those on the Hill one day, they seemed surprised that The National Cap Lyme Group was going to hold another Hearing and the Nat Cap Lyme was told why this was surprising...because there had just been a briefing
Now, these are not my words but this is what I was told that was said.....that Pat Smith and Ken Leigner gave what appeared to be a rushed poorly put together briefing...mostly using Dr. Leigner's older studies. I was told it was boring and not very well done....because it appeared to be put together in a hurry.
People are afraid of the consequences of this action. It is difficult enough to get congressmen to come to these briefings, never mind to get them to come to a briefing after one has already been held on the same exact subject in such close proximity to each other. Hopefully this action will not prevent good attendance at the Nat Cap Lyme Briefing that they have worked so hard at.
Everyone talks about working together. Well...we need to ask why this apparently secret briefing occurred without any input from anyone in the Lyme community and why it was not announced. It's the timing we are concerned about. If the LDA had come out in the open with their plans we all could have talked it over and discussed the possible ramifications. Maybe we can all do this in the future. We can't work together when things are done in secret.
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northstar
Frequent Contributor (1K+ posts)
Member # 7911
posted
quote: If the LDA had come out in the open with their plans we all could have talked it over and discussed the possible ramifications. Maybe we can all do this in the future. We can't work together when things are done in secret.
I agree with this observation. For years, I have read disgruntled opinions (some quite negative), and never really understood the basis for their perspective. I now understand.
If the meeting was done without input or knowledge of NatCapLyme organizers, then LDA missed an opportunity to double everyone's voice, and inadvertently weakened their very own position, strategies, and reputation (via methodology and rumored ineffective content).
I felt Dr. Cameron had some good points in his responses to questions on this subject. I appreciated the way he distanced himself from the specifics, and spoke from an overview.
Perhaps this public voicing of problems will lead to improvement in communication.
Co-operation and mutual support are necessary, both at a personal and also at a strategic multi-organizational level, in my opinion.
Northstar
Posts: 1331 | From hither and yonder | Registered: Sep 2005
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posted
I have also seen negative comments about Dr. C and others on this forum, especially where people are seeking new LLMDs. I've read that he doesn't believe in coinfections. NOT TRUE. I am his patient and he's treating me for co's.
I have worked with other docs who I don't like, but I don't blast it all over lyme net. First of all, some lymenetters are their patients and having a good experience. Secondly, I don't want to fan the anti-llmd sentiment.
I agree that we need to stick together more! Even if we have different opinions and experiences our goals should be the same better research and treatment of TBDs.
Posts: 524 | From Hudson Valley, NY | Registered: Jul 2007
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Yes, I think this should be discussed because the rumors flying around are enough to knock down a cow.
Thank you for bringing up these points DS. Let's get the facts out in the open if we can.
NOTE- I am using your comments because they are well written and I will assume they represent some of the concerns others may have. My responses are NOT directed at you in any way... they are meant as an avenue to share what is and has been going on... so everyone understands.
DS said... "What set off this discussion was the secret briefing which the LDA held."
First... the radio discussion should never have been so vile and hateful... o matter what their problem was. That is NOT in the best interest of anyone. They should NOT have aired their dirty laundry and spread gossip... especially when they didn't have the facts and never bothered to ask about them.
Had the people involved in the radio show wanted to know something... they had plenty of opportunity to find out privately. Attacking ILADS and LDA on the air is NOT the way to present patients views or concerns... is NOT fair to patients... and is despicable, in MY opinion.
That said....
Rumor one. This was not a secret, not at all. It was a part of everyday business and just one of the thousands of things ongoing on the patient's behalf.
This was one event in a long line of things that have been done over the years by LDA/ILADS ... and it was planned (suggested by Congress themselves) before the summer break earlier this year.
This is one of either two or three Congressional briefings held this year alone (Fallon/LDA).
Had anyone wanting to do something different in the political arena checked with Congress or ILADS or LDA before planning this movie/book event... they would have known that.
The ILADS/LDA scientific briefing was presented to dispute the IDSA's statements there was no such thing as "chronic Lyme". Who better to do that than our only doctor who has a CDC documented case of persistence? And a doctor who is one of the best.. if not THE best in the field right now.
Note- Congressional briefings have been ongoing as part of the legislative plan for years. Patients are not involved in this specific aspect because, first of all, they can not attend... hence the name "Congressional briefing".
They also don't go to thousands of other events LDA/ILADS is involved with... so this is not unusual.
Sick patients with sick kids especially... really don't need to be bothered with the day to day ILADS/LDA business ... unless they WANT to and want to help of course...
And they don't need to write letters or make calls about briefings (volunteers behind the scenes have been doing that work in an organized, professional fashion for a long time now).
Patients are also not asked for money to present these briefings (LDA has been covering the costs)... and there is no fanfare surrounding it because there is no need.
IMPORTANT NOTE- Please THINK about this.
Announcing in public what is being done behind the scenes allows the IDSA to have access to what is going on.. so it can be easily countered by them. You don't give up all of the details of your game plan. No one does.
The fact things being done to help us aren't broadcast all over the place doesn't mean nothing is being done.. or that many who do the work day to day and care don't know about it. There is a wonderful team of folks working to help patients ... all the time.
They stay SO busy it is unreal... and I've seen them pull together and do things that amazed me. They certainly deserve credit.. but they NEVER ask for it.
When Lyme patients are needed to jump up and down for the effort.. or for a public event or rally or our doctors... they are asked to help... and LUCKILY ... they do.
Without them.. nothing could be done. But we can't wear them out, suck their pockets dry every time something needs to be done... and involve everyone in every "business as usual", day to day event.
Keep in mind. This is a war.
We are.. or actually we were... HA! ... the underdogs. We ARE moving ahead the way it is now... and as a matter of fact....
More BIG news is on the way from all the efforts that have been done already.
BTW- I informed those planning the event (and did it on THIS board- in public) to check on the OTHER PLANS in place and suggested the timing was not right for this event... blah blah blah...
And, I said they should check with others to see that what had been set up in advance, so their event wasn't in conflict.
They took notes from my posts and then later addressed some of my concerns on that radio show a while back.. and in emails sent out.... and on posts here.
But did they take the advise and ask someone about what is/has been going on? No.
They chose not to do so.
As a matter of fact... one poster here told me there was NO need for me to respond to the posts about the movie/book event... as if they didn't want my input. So my suggestions, meant to HELP, were just blown off.
Aside from that being an insult... it was a poor example on their part of "working together" .. and it was put forth by the people claiming they WANT, almost DEMAND for us all to work together.
DS said.. "No one was made aware of this briefing."
Actually, everyone who was involved in it was aware. Congress (who advised it be done), the speakers and sponsors and volunteers doing the work to set it up, etc all knew about it.
They are the ones... and the only ones involved. If anyone wanted to know what was going on.. they were told to check it out and didn't.
DS said.. "The LDA claims to represent all lyme patients. Well....if this is so, then the LDA needs to ask for the patient community input."
First, I have never seen a claim that they represent ALL Lyme patients. They certainly represent the majority of them and have for years. They are active in many states and have many groups across the country.. with many many members.
Second, I've never seen the LDA's email or phone shut down to NOT receive input from patients, leaders, doctors, media, etc. Ever.
But they are certainly not mind-readers.
If someone wants to make a comment or suggestion... they have to pick up the phone and do so.
They have always accepted and even welcomed comments, suggestions and input from doctors and patients.... even ME! HA!
Will they use them all? No. No organization can do that. But they do listen, discuss them and consider them.
DS said... "that Pat Smith and Ken Leigner gave what appeared to be a rushed poorly put together briefing...mostly using Dr. Leigner's older studies."
I have to laugh. Imagine getting up early in the morning and driving from NY to Washington DC.... in traffic. And doing this as volunteers... and having to stop all other plans and appointments to do so.
To me it seems a thumbs up and a thank you for the effort would be nice... rather than a kick in the head... but that's just me.
Anyhow.. I wasn't there so I can't say they if they "looked" rushed..
But I can say that I have seen Pat and Dr. Liegner on many many occasions over many years and they have never ever ever put together a poor presentation. Ever.
In my opinion, they have ALWAYS been professional when needed, forceful when needed, moving if that was the tone and both are as educated as you can get...
And they are two of the best.. if not THE best people to present our situation to anyone. Actually I am VERY proud of them both and feel VERY lucky to have them on our side. We are blessed, we really are.
I don't know anyone who could even carry their socks... or who would have been better, especially in this SCIENTIFIC/MEDICAL situation.
As far as "old" studies go... yes. That's actually funny. Of COURSE there are older studies being used to present the history of persistence in CHRONIC Lyme disease.
Chronic Lyme has been around a LONG time. Dr. L was showing the LONG history of it being in existence... and using the science and his years of experience in the field to back up persistence.
I didn't see here in the rumors that he also used the newer studies too. Well, he did.
Maybe presenting that fact here and now MIGHT have made him actually look good? But then... we can't have him "looking good" when it is a RUMOR, can we?
SHAME SHAME!
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DS said.. "I was told it was boring and not very well done....because it appeared to be put together in a hurry."
I've spoken to those involved in the presentation and that were at the presentation and that was not at all what I heard. Did that rumor come from disgruntled people... like what is being seen in the radio show?
As far as boring.... science sometimes is... but this science interests me. It concerns my life... and the lives of others I care about.
And truth be known.... Congress needs scientific and boring to be able to help us. They can't sign bills or give out money for research on emotion alone.
They MUST have the science to back them up before they can help us.
The LDA and ILADS gave them the science on a silver platter in a professional manner. Goal accomplished and with flying colors.
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DS said... "People are afraid of the consequences of this action."
Sorry, I don't know anyone who is "afraid" of a Congressional briefing. What on earth are they afraid of?
The IDSA presented evidence that there was no such thing as "chronic Lyme disease". We presented evidence there was such a thing.
If someone wants to be scared.. be afraid of the IDSA continuing to get away with those false statements... and the fact they are trying their best to convince Congress they are right.
If someone wants to be afraid... be afraid that we could still be sitting back 40 years ago with no one to help us, and no one to work hard to make this right.
This briefing was WONDERFUL!!! We are moving forward. We are educating those who can help us. We are providing them with the tools to do it.
It actually was VERY well atttended.. with two times as many people attending than is normally seen in other briefings on other topics. That info came from Congress reps by the way.
So don't worry... be hoppy!
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DS said... "It is difficult enough to get congressmen to come to these briefings, never mind to get them to come to a briefing after one has already been held on the same exact subject in such close proximity to each other."
You got that right!
I've been on the phone with them... and emailing them in the past... long lists of names to get through... and it is hard to do.
That is why the briefings are being done months apart... and only as needed so as not to "overkill".... and are pre-planned.
Had anyone taken time to think this movie/book plan out and research what was ongoing already... and had kept up with the politics over the years... rather than jumping in blindly with both feet... they would have known not to schedule it at that time.
I'm sorry to sound so "rough" .. but has ANYONE thought about the harm that may have been done to the organized actions already in place by the LDA/ILADS? How this new briefing could have affected that? And how that briefing could hurt patients?
Or has it all been a "me, me, me" thing... and why didn't they tell ME ME ME... like evident by that radio broadcast?
Someone needs to get their priorities straight if they plan to REALLY help patients.
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DS said... "Hopefully this action will not prevent good attendance at the Nat Cap Lyme Briefing that they have worked so hard at."
I've seen the work being put into this event.. and it is a lot. I am very impressed... except for the rumors and nasties and kicking others associated with the event, of course.
I know what is involved as far as work goes. I've done this work before myself. Grueling work. I have to give a thumbs up on the advertising of it! Well, not the radio stuff but the written work involved.
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DS said... "Everyone talks about working together."
YES! They did! And then this radio show comes out? This is NOT the way to do it. No wonder things are strained.
Kicking ILADS, our docs and the LDA, etc... is NOT the way to work together... and is NOT... absolutely NOT the way to help patients.
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DS said... "Well...we need to ask why this apparently secret briefing occurred without any input from anyone in the Lyme community and why it was not announced."
I do hope I've explained the history and circumstances so it is clear.... and that anyone reading this can easily see it wasn't a "secret"... and why the plans to help patients aren't broadcast all over in public.
Bottom line... We DON'T need the interference from the "other side".
And if you want my opinion... yea right.. but here goes....
Rather than designed as a Congressional briefing... this would have been a nice public event with Congressional members invited... but it could be held in the Congressmen's own districts in their own states... at a time when they could come.
It is similar to the support group meetings and movie screening events ... and book talks that have been ongoing all over the place.
Then once interested, those who wanted to buy a book or the movie during the program could do so... like is being done in many other areas... and one group wouldn't have to raise so much money.
There are so many lunch briefings in DC already that the staffers told me they can be overwhelming... and poorly attended.
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DS said... "We can't work together when things are done in secret."
I agree to an extent. But this last ILADS/LDA briefing could have been made known to anyone planning a similar event simply by asking.
And.. what is good for the goose is good for the gander.
Had the organizers of this publicly announced briefing informed others (ILADS/LDA who have been doing things for us for years) of their plans ahead of time.. or talked to them about what was going on before they announced this plan to the world... this wouldn't have happened.
My advise- If you suddenly jump into a ring you are unfamiliar with to try to fight... you REALLY need to know who is in there before you do... and what they are doing.
If you don't... it can mess you up and messes up the efforts for everyone.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Whew...
And in conclusion...
I object to the radio show, the attacks and the tone. Horrible stuff.
I do think educational efforts made on behalf of us all are NORMALLY a good thing.
I do hope the movie/book event is a good one... and I am hoping for the best... for all of our sakes. Good luck and thanks to all.
I am also open to assisting with any project ideas BEFORE they are put on the table. And my fees are nominal... well, actually free. HA! If I knew EVERYTHING... the price for advice would go up... so keep that in mind.
I beg to work together.. and always have. It is a MUST if we are going to be getting somewhere and not interfering with others efforts.
I also know something that is not thought out or planned properly can be destructive to our cause... and can hurt us all in the long run.
So PLEASE... if you want to do something to help.... check with others already working on those things before you publish your event so you don't get stuck in a jam and so you are prepared to do the best job possible... which is what we all deserve.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Northstar...
You said.. "If the meeting was done without input or knowledge of NatCapLyme organizers, then LDA missed an opportunity to double everyone's voice, and inadvertently weakened their very own position, strategies, and reputation (via methodology and rumored ineffective content)."
Hope you understand from my long-winded explanation above what happened and why.
If not.. let me know.
Catskill...
You said.. "I agree that we need to stick together more! Even if we have different opinions and experiences our goals should be the same better research and treatment of TBDs."
Amen to that!
And I thought Dr. C did a good job too. I am just VERY sorry he was trying to help educate others and got attacked. So much for building a good relationship with our most wonderful and much-needed doctors.
I hope he shakes it off and will help us again... and knows we all aren't like that.
BTW- He made a long trip to Maryland years ago, bless his heart, to speak for 3 minutes.. yes just 3 minutes was all that was allowed... to our state legislators.
He was vital to the cause and VERY VERY good!
Let's pray he won't walk away from us after this last display of crazed emotion and attacks. We need him and everyone like him!
northstar
Frequent Contributor (1K+ posts)
Member # 7911
posted
That is interesting, TC.
Another possible outcome that was not considered:
First, neither party, according to your description of events, considered checking with the other.
LDA knew about the special luncheon, and although having scheduled a briefing prior to this knowledge, did not contact the organizers of the special event to see if their programs could support one another via explanations during each person's presentation.
For example, what if Dr. Leigner's presentation on chronicity were used as a kick off point, a scientific frame of reference, for the following weeks's luncheon. And this had been stated.
They could have done 2 things with this.
a. They acknowledged and "sneak previewed" the science behind the next week's actual personal impact of what Dr. L's science was telling them. It is a way to get the congress interested in attending the second part of this.
b. This way the groups are working together. Acknowledgement. When groups communicate, they present a more overwhelming consensus to others. This will reduce the "fractured image" of lyme groups, and will reduce the hope that IDSA is dividing the lyme patient community.
Both parties were responsible for attempting communication.
I still think Dr. C communicated the ILADS position well. The moderator (whether she believed the things she was saying is not known), spoke of things that have been spewed across emails and throughout certain groups.
When Dr. C appropriately pictured these events as a problem with the groups, I think he was giving an accurate assessment. It is not ILADS position to arbitrate advocacy group disagreements. I think he quietly put to rest many harmful false innuendoes about the LDA/ILADS formal separation. Both groups are getting bigger, agendas and goals for each group are different, although they are both about the same thing.
I thought it was a logical move. Companies split off when they get too big to be under one management. This is just a management move. The problem was the innuendo about it. Some people just like to read into things. Dr. C put that stuff to rest.
It is up to the groups themselves to recognize and learn how to work together in some way, not necessarily on the same project, but perhaps tying in or relating their work with other groups.
In other words, Group A can ask themselves, and ask Group B, how can this be used to help both of us.
No one asked, not Group A, nor Group B.
Thus, both presentations lost the opportunity to make a more forceful presentation. Context, background, overview...they all tie the disparate elements together, making the individual components more relevant, and contributing to a better understanding and appreciation of the real lyme world by the congress.
Northstar
Posts: 1331 | From hither and yonder | Registered: Sep 2005
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bettyg
Unregistered
posted
tincup,
i've been listening to this for almost 1 hr. now as i read the board.
moderator, sue vogan, has been in the ATTACK mode the entire time after tina's call at the beginning.
cameron has done a good job answering; he's kept his cool.
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
North...
Good thought. I can see where that could be confusing. If I may?
You said.. "First, neither party, according to your description of events, considered checking with the other."
You are right. But where does the responsibility lie here?
My brain "sees" the answer but the words are lacking. I'll try to explain it with an example that popped in my head. Lucky you!
Ok....
McDonald's sells hamburgers.
One block down the road is Jack's Car Wash.
They have both been in business for the past 10 years. Jack gets burgers at McDonalds and the McDonalds employees wash their cars at Jack's Car Wash.
One day Jack decides to start selling hamburgers too. He suddenly has the idea that he can do a better job than his neighbor who has a long history of selling burgers.
Jack doesn't check with McDonald's for any advise, information or to find out how it has been going for them in the past... or even what their plans are.
He is just bent on selling burgers and jumps in out of nowhere with both feet with this big idea.
When Jack proudly announces his new plan to sell hamburgers at his car wash and finally tells the world he is doing so...
He later learns that Ronald McDonald was planning to come to McDonald's the same day he was going to start selling his burgers at his car wash.
Jack then becomes furious at McDonald's because Ronald happened to be scheduled to come to McDonald's the same day he was going to start selling his burgers... and he didn't know about it!!!
I hope you are following me here?
For some odd reason Jack expected McDonald's to personally alert him to what Jack called this special event they had planned- Ronald coming- (which was just typical business practices that McDonalds normally does).
Sooooooooo.. we have to ask ourselves...
Is McDonald's responsible to go around to every car wash and alert them when Ronald is coming to town in the event the car wash owners decide suddenly they want to compete with McDonalds and they jump into the business of selling hamburgers?
I don't think so.
If I wanted to have a meeting with Congress about Lyme- I would first go to those who have been doing this for years to get advise.... and to be sure I was on the RIGHT track..
BECAUSE I AM DOING THIS TO HELP PATIENTS...
And I would consult those with experience to be SURE that I wouldn't do/say something that would mess things up. That would be MY responsibility to do if I REALLY cared about the patients and wasn't doing this for any other reason.
Once the LDA found out about the other event... is it their responsibility to contact them and tell them not to do it?
I don't think so.. and I am REAL sure they wouldn't listen. After all I tried to tell them and I was brushed off and slammed for my thoughts on the matter.
Now...
Do we think the LDA is responsible for telling every group across the nation and every patient all their business every day and what they are all doing... in the event another patient wants to suddenly jump in the rink?
I don't think so. If someone else does... thinkabout this.
It is like me saying to Fox News that I expect them to let me know what they are doing behind the scenes all the time because... after all... I watch their news show.
Or me telling the Red Cross I want to know what they are doing all the time... in the event I may someday want to start an organization called the Green Cross.
northstar
Frequent Contributor (1K+ posts)
Member # 7911
posted
I appreciate the reply. My points were not about who should have checked with whom. Neither did. And there are no "shoulds" involved.
However, in the future if a group wanted to maximize all actions, contact would help.
If they did not want to contact, that is a choice. The opportunity was still there to present a point of view that ties other activities of a group to what one is doing. The opportunity was missed. No shoulds here, just a missed opportunity for both groups.
Maximize impact. Reinforce each other. Acknowledge how all parts play.
Dispense with finger pointing, and figure out in the future, ways to maximize every presentation. Not because one group "should" get permission, but to exponentially maximize both groups work .
Different focus.
Northstar
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
North said..
"For example, what if Dr. Leigner's presentation on chronicity were used as a kick off point, a scientific frame of reference, for the following weeks's luncheon. And this had been stated.
They could have done 2 things with this.
a. They acknowledged and "sneak previewed" the science behind the next week's actual personal impact of what Dr. L's science was telling them. It is a way to get the congress interested in attending the second part of this.
b. This way the groups are working together. Acknowledgement. When groups communicate, they present a more overwhelming consensus to others. This will reduce the "fractured image" of lyme groups, and will reduce the hope that IDSA is dividing the lyme patient community. Both parties were responsible for attempting communication."
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I see your point. A good one too. I'll take a stab at it to see if I can explain... and to see if next time there could be a better plan in place before hand.
Having made many calls to the Congressional offices recently... I've heard about the movie/book briefing. The Congress staff was well saturated with the news of the event (calls, visits, mailed letters, etc).. some to the point of annoyed actually. That turned me off it immediately.
If Congress staff is being annoyed... that is NOT good. To get done what I was trying to accomplish I had to tell them that I was not involved in that program, it was another group.
Then and ONLY then would they give me time to state my business.
Sooooooooooooooo...
1. The LDA- I do NOT speak for them so I will say ME- had no reason to interfere with or promote someone else's program any more than it had been already, IF they wanted to. First of all, they (I) did NOT know the details because they weren't consulted at all about it. They (I) didn't know if it would be a good program, a really bad program.. or what.
I personally wouldn't get involved in a program or have anything to do with it unless I had input and approved the final plan.
As a matter of fact... I saw major problems with it from day one... and rather than accept suggestions to improve it.. my ideas were tossed in the trash.
Why wouldn't I talk it up on my calls?
First of all.... I don't agree with announcing a program to the public and promising patients you will do something for them... and then trying to collect money from them to fund it... especially to the tune of over $17,000.00.
And especially when Dr. Jones needs help to keep treating our children... and I knew most folks were already tapped out.
That's a lot of money!
Then to come back and ask for even more money for the other stuff too? Money to pay for the lunches. Money for the speakers expenses, money for this and that.
That isn't how it is done in MY opinion. Our support groups, organizations, etc normally fund their own projects.. or get money in advance BEFORE they make plans to do something.
I also object and stated so previously... about paying for a book the Congress members don't have time to read.. not to mention they may have no interest in. They have told me over and over that the LAST thing they want is something more to read.
Handing them any book, especially at the end of the session... and then expecting it to come off the shelf to be read... is not practical. Like a car mechanic working all day... and having to go home to fix his wife's car.
YULK! And the guy supposedly LOVES his wife and even still that thought isn't fun for him. We have a situation here where Congress doesn't LOVE Lyme disease... so that would be a harder sell.
My suggestion... and I shared it early on... would be...
Expenses could have been minimal by giving them a one page handout.. which they MIGHT read... if you are lucky.
I would have SUGGESTED this movie/book idea to others if I wanted to do it, collected funds for it if all agreed it was good... see what I had in the pot after fund raising... and then built the program around my ability to pay for it.
As for the movie....
I love the movie. BUT...
Do I think it proves beyond a doubt that chronic Lyme is persistent in a scientific way? Enough that would make Congress be able to sign a bill and hand over money for research?
No.
The LDA's briefing was done with a specific goal in mind this time too (each one has a goal). This was to prove chronic Lyme does exist... scientifically.
The movie/book briefing didn't set out with that goal in mind. It is totally different. Their said their goal was to get a book and movie in the hand of all Congressmen.
Is it a nice idea? Yes.
Does it prove the existence of chronic Lyme. No.
But we can't compare the two projects really because they have different objectives.
Could we have linked the two programs together? Possibly.
But that would have had to start with the movie/book briefing being discussed, funded and planned out in detail with those doing the other briefings all along. That wasn't done.
Was it Dr. L or Pat's responsibility to try at the last minute to coordinate the events when they weren't even informed about them?
No.
They each have a SUPER busy schedule. We are lucky to have them do what they are already doing. To expect them to stop and/or postpone patient care (Dr. L) and/or cancel programs (Pat) because someone did an OOPS... wouldn't be fair to them.
If they should stop what they are doing.. should they stop now? I know more and HUGE plans are in the works... so should they stop and change them too.. without even being asked for help?
I think they did the right thing. They had a plan and a goal and a program set up to accomplish the goals. In spite of the interference and monkey wrench thrown in there at the last minute.. they followed through and accomplished their goals.
North.. I hope you can understand my jibberish here. Getting tired.
I think we should try harder to work together IF another group wants to jump in the political arena. But it takes both sides... advanced notice.. and like you said.. communication.
And cross your fingers.... this next briefing may not be needed at all.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
North..
You replied before I posted the second half of the answer.
Bottom line.. should groups work together?
That would be nice.
Do I think they will?
No.
Do I want them to after knowing what I know?
No.
I don't see a need for groups who don't want the bill passed and who have other agendas to work with those who do want the bill passed. Nor do I want to see them messing with what is already going on... undermining it.. and making us as a community appear divided.
It hurts all patients when this happens.
I would like it if those with other agendas just move on and stop interfering with the efforts of others. The Lyme world is big.. and as Dr. Cameron said.. we all are moving toward the same goals... but we "all can't go to Washington".
If groups stick with what they know... and stop trying to reinvent the wheel...
northstar
Frequent Contributor (1K+ posts)
Member # 7911
posted
I didn't think it was jibberish! Made sense to me!
I am sure the congress people have had input from across the nation not only about the luncheon, the breakfast briefing, and then also the bills that were stalled, and about Pallone's role in this (the NJ rally stuff). Lots of phone calls being made with various subjects and over time. Perhaps more judicious use of this type of campaigning can be considered.
Yes, lots of phone calls...I am sure they are becoming sensitized to alot of things, with this international financial situation adding tension.
Visuals make big impacts..they say so much without having to explain.
The choice to read is theirs. The book is an opportunity presented so they can make the choice. If it is talked up, rather than ignored or discredited, then constructive actions are used. If the book is not given, the chances are even slimmer that they would go online to purchase it. Maybe their wife, son or daughter will read, and say "Wow". No matter, it will be physically present, and someone will pick it up.
I am sure there is a lot more going on than I am aware of. I just wanted to move on, and say, ok, how, in the future, can we use events like this to everyone's advantage. Not disagreeing with a project, but asking how one can make them work better.
And Dr. C did a really decent job putting these things in perspective. The aggressive questioning brought up the hush hush subjects. Hey...that is ok, so the groups need to ask what they can do, rather than subverting or sabotaging others. If one does not agree...hey...ok, too, but how will this be used? For constructive or destructive consequences? Look for the positives from another group's project, and use those to support and embellish one's own group projects, rather than to diminish others. And generously use one's owns positives to support another's positives.
I am blithering.......does this match jibberish?
Also, I just saw you had another post while I was writing.
More blithering if I even try to figure this out! Maybe later. I dont think we are disagreeing at all, though. There are no fingers pointing about who is responsible...only opportunities.
Northstar
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sometimesdilly
Frequent Contributor (1K+ posts)
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posted
imo, northstar is 100% correct that coordinated action is most effective.
anyone who has ever worked and lived in the non-profit world knows this to be true.
unfortunately, every person who didn't burn out tilting at windmills and who lasted for some years in the nonprofit world knows as well that coordinated action is nonprofit' holy grail- the most desired yet most unattainable goal.
even very limited coordinated actions are rare, for many many reasons, mostly institutional that are not obvious to folks who don't labor in that world.
In the case of LDA- in general- not in the one instance of what did or did not happen about Lyme briefings on capital hill.
Maybe context helps. If you (generic you) had cancer instead of Lyme, do you think that the American Cancer Society would feel obligated to ask you as a cancer sufferer what you thought about the Society doing a briefing on Captial Hill?
Do you think national cancer victim advocacy groups consult with unaffiliated cancer support groups before they act?
of course they don't and they don't and they don't.
non-profit orgs like this typically limit their contact with actual sufferers to asking them for funds for the national org to continue doing... what it will, what it thinks best, period.
And with the example above we are talking about a non-profit with as many resources, human and financial, as any non-profit advocacy group; they are in a completely different league than the LDA.
IMO, if those of us with Lyme have suggestions or wish lists or whatnot, it is OUR responsibility to communicate them to the LDA.
Thinking it is the LDA's responsibility is asking the LDA to do something that no other national non-profit advocacy group i've heard of does.
I understand the request and the good- faith thought behind it- i just know in context that is unrealistic and unreasonable.
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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northstar
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posted
Dilly, I understand your point about reality, etc. Groups do not have to work on the same project...they can "play" off of each others strengths. It is non-interference, and mutual support, and validation.
Northstar
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sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
north- i know what you are saying- believe me.
saying 'reality" is not meant to be disparaging or to disagree with you about what is most effective.
I've lost many nights sleep on this topic, back when i was able to function and worked in the non- profit world.
The most recent conversation i've had about this was 2 months ago with a friend who has been working for the past year in Zambia (Africa), training lay people and nurses about how to respond to AIDS.
She is 1,000 percent committed to helping there, as is every single other person and every single other of the 30 organizations there, all in the same place at the same time for the same reason.
Do the orgs cooperate? No. Do they coordinate? No. Do they even have regular COMMUNICATION? No.
Does that drive every single person in every single of those orgs nuts? YES. For a long while. Then they go back to doing what it is they can do, the best they can. They do not have the luxury of waiting for the calvary- their patients are dying all around them.
That is example number 2.
I could give you countless others because of my past experience and because the vast majority my friends in non=profits have had to deal with this problem first hand.
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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posted
Having not listened to the broadcast, I can see I should have kept my mouth shut about what the problem was.
However, now that it has been thoroughly aired in public, probably to great laughter from Wormser and his gang of thieves, it looks to me like Sue needs to get some lessons in hosting a radio program, make sure this kind of thing does not happen. It certainly does not seem to have been useful. And it is a host's responsibility to keep order.
Our lack of progress, despite trying for years, may be partly due to this lack of cooperation/coordination between groups and their activities. This may be a typical problem in activism, but there is still no excuse for not trying to improve the situation. Not every non-profit is dealing with life and death matters, and that is what makes our cause different from some others, and more important to TRY HARDER to get along.
People who want a say in actions need to become activists, donate their time or money, and not just sit in the peanut gallery criticizing and demanding details from the people who are doing the work.
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northstar
Frequent Contributor (1K+ posts)
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posted
I wonder how TG knew to phone in, if the printed schedule on the website stated it was the Theralac topic....
N.
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sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
Lou (et al)
every other thing aside, can't say I agree with you that there has been no lack of progress.
imo, it is amazing that anything at all has been accomplished by the relatively small handfuls of Lyme patients who have been able to be consistently active over the years, despite how ill they are, financial pressures, and lack of support even of their own family members.
What has been accomplished has been all the more impressive given that such small handfuls of folks have been battling against some of the wealthiest, most powerful, best connected, and most ruthless adversaries in the US, including insurance companies.
There is no doubt, IMO, that had it not been for the activism of patients and patients groups,every part of this battle would have been lost a long time ago.
I'm a big believer in the right to question those who lead- I've risked jobs for telling my supervisors and my supervisors' supervisors and more than once, my employers' company president what's what-- but I have never done so from the peanut gallery sidelines.
Get involved, communicate your ideas with those who have been fighting this battle for years and decades, take coordination as YOUR responsibility.
[ 21. September 2008, 10:54 PM: Message edited by: sometimesdilly ]
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
LymeNet Europe...
Will you give it a rest with the emails already?
Come ON!!!
I'm too busy to fool with you.. and so is everyone else.
posted
I'm not one for stifling dissent. But I think if people really want to be smart about Lyme activism, no matter what side they're on, they'll think about how their expression of opinion will be taken by the potential Lyme activist out there who is not yet involved.
People often gripe about not enough accomplished (and I'm with dilly on this, that small numbers have accomplished more than might be expected if you think about it). But we need to realize that the key to accomplishing more is getting more people INVOLVED. The numbers are out there, but it's not reflected in advocacy - yet.
From personal experience, I've talked with new people who were eager to become Lyme activists in some way, and got COMPLETELY turned off when they heard things along the lines of this radio show.
They didn't know whom to believe, but much worse, they stopped CARING.
There has to be a way to publicly discuss what the best approaches are and even criticize one another - civilly - without sounding like one's main motivation in life is attacking another advocacy group (whether that criticism is deserved or not - something that goes both ways.) Otherwise it's incredibly confusing and off-putting to the thousands of people who could be helping in so many different ways.
Just my .02.
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posted
Don't think I said no progress has been made or that any particular person was at fault for lack of coordination. However, the difficulty of getting diagnosed and treated and getting insurance to pay has not changed. And doctors are still being hounded for treating chronic lyme. So, that is the measurement that should be used in determining progress.
Any group that initiates action in an area that other lyme groups are working in already owes at least a courtesy call to inform, if not ask for a united front and cooperation. If this was not done, it should have been. People who are working in a political climate surely understand the need for allies?
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
lou my comment about people 'griping' was not meant as a response to you, and I'm sorry if it sounded that way. I was thinking of comments made on the radio show and elsewhere which are much more emphatic about efforts being useless or worse, and in the context of blaming leaders.
We certainly do have a long way to go, no disagreement there.
My point was only that we should look to lack of numbers (when you think of all the chronic lyme patients out there) as the cause of relatively slow progress, rather than focusing on failure of leadership as the radio show host did and others often do. Even though leaders aren't perfect, and people should be able to discuss what has gone wrong and what could be better, I think this could be done in a more civil and positive way - which would bring in more people to work for change - which would get us the change we need. Or a better shot anyway.
I get the feeling that people who have been at this for a while, working hard and with such passion, sometimes forget what it's like to be an ordinary person looking for basic info on how to get involved. People who don't know the history of the LDA and other groups and don't really want to know, they just want to do something that will help. The hostility (or even hearing 'don't trust this or that person') is so alienating, and we need those people. We need to build a movement.
(Totally agree with lou's statement btw: "Any group that initiates action in an area that other lyme groups are working in already owes at least a courtesy call to inform, if not ask for a united front and cooperation. If this was not done, it should have been. People who are working in a political climate surely understand the need for allies?")
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bettyg
Unregistered
posted
i too agree with lou's last paragraph reemphasized by ldfighter ... wonderful, thoughtful comments lou! xox
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Well...
I don't want to burst your bubble there TG... but you may have to stand in line if you are waiting for an apology.
I have first dibs on that, because I posted it first.
If you'll notice in the beginning... I said..
"I found this radio program to be totally unprofessional, inappropriate and disrespectful toward Dr. C, Dr. L, ILADS, Pat Smith, LDA and patients across the country. In my opinion they all deserve an apology after this show... and a LOT more respect in the future."
Since we both are waiting for an apology... one of us demanding one and the other knowing one won't come....
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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posted
This talk show segment is a dispicable example of how someone claims we all need to "get along" and yet the host baits and traps the guest.
Funny thing is, that the Guest Dr. C did beautifully and handled the situation perfectly.
This segment made the host look crass and showed the hosts hidden agenda. She wasted valuable time that could have been spent in a more productive manner to further the relations btwn the different groups.
If she was legit and without hidden agenda, she should have given constructive criticism to the guest and shown examples of how we can all come together, not keep beating the horse into the ground.
The host hammers the point again and again about getting along and playing together in the sand box, yet does exactly the opposite.
Personally as much as I would like all the different sides of Lyme to get along, it will never happen when we just witnessed first hand a show like this that was obviously set up to be a boxing match.
IMHO This segment smells like a camp "C" agenda and the host has obviously aligned herself with that camp.
This will only weaken their position and they have just lost a lot of credibility.
Sorry to come across so bitter, but it smells.
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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bettyg
Unregistered
posted
lies, you summed up my feelings wonderfully; the host really had a chip on her shoulder!
at the end she makes note that he is coming back in 2 wks. to talk; i SURE WOULD NOT!! to more verbal abuse!
fuzzy, you had wonderful words; very eloquent and thought provoking!
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posted
This infighting is counterproductive and will not help any of us.
Posts: 984 | From San Diego | Registered: Nov 2006
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sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
Parisa- this infighting is instigated.
and the more folks stop by to pile on, the more the senseless infighting goes on and on.
such a waste of time and effort.
please, tincup (or anyone else) don't waste your breath replying to the latest absurdities being posted by brand-spanking new newbies.
i swear for each non-constructive post i see here i am going to post a recipe for how best to cook up this season's fine harvest... pumpkin and apples.
and if THAT does't work, i 'll be back again and again to sing kum-bai-ya.
y'all been warned.
pickles
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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northstar
Frequent Contributor (1K+ posts)
Member # 7911
posted
Well, pickles, I thought the post was from outer space anyway....if the purpose of the interview was to uncover LDA "graft", then they should ask Pat Smith to be guest. Or one of the phantom C group.
Totally off the wall to ask an ILADS President about this stuff... as far as secrets? no one has answered how TG even knew about the program. Secret emailings must be par for all groups, then....
OK, waiting for a recipe....... Northstar
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sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
ok, Star; I'm afraid you ARE going to have to be penalized one recipe. A simple one, since at least your post was short:
Applesauce Recipe
* Preparation time: 45 minutes. Ingredients
3 to 4 lbs of peeled, cored, and quartered apples. (Make sure you use a good cooking apple.)
4 strips of lemon peel - use a vegetable peeler to strip 4 lengths
Juice of one lemon (or heck, more for detox!)
3 inches of cinnamon stick
1/4 cup of dark brown sugar up to 1/2 cup of white sugar
(big no-no on sugars. use much smaller amt of honey instead, or substitute grape juice for water below)
1 cup of water 1/2 teaspoon of salt Method
1 Put all ingredients into a large pot. Cover. Bring to boil. Lower heat and simmer for 20-30 minutes.
2 Remove from heat. Remove cinnamon sticks and lemon peels. Mash with potato masher.
Ready to serve, either hot or refrigerated. Delicious with vanilla ice cream or vanilla yogurt.
Freezes easily, lasts up to one year in a cold freezer. -------------
cheers- camp D (D for delicious)
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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northstar
Frequent Contributor (1K+ posts)
Member # 7911
posted
OK, I vote for Camp D!
Yes, Fall and Winter...time to bring out the applesauce.
I add suggestions to your pot: Use Grannie Smith's Add 1/2 c. (for 7 apples). champagne or dry white wine to liquids.
compliments of Wms. Sonoma! Their recipe also calls for the real cinnamon sticks. Wow! Expensive!
The do it a little different: Bring to boil water lemon juice sugar wine
Add apples, return to boil and simmer 8-10 minutes
Remove apples (slotted spoon)
Then add the cinnamon to the liquid and boil til reduced 1/2-2/3. Remove cinnamon.
Right before serving, add zest of 2 lemons, and pour over mashed apples before serving.
One day I will post their homemade cranberry sauce....knocks your socks off...nothing at all like the stuff in the can. It goes in a flash at the holiday table.
Thanks! Northstar
Posts: 1331 | From hither and yonder | Registered: Sep 2005
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posted
I too listened to this show and was surprised by the tactics employed by the radio show's host. When she said the words "secret meetings" I had to laugh out loud because it just sounded so silly and junior high like!! Who would take someone seriously when they talk like that! Dr. C's response was excellent.
I agree with what Liesandmorelies says above. This other camp is really turning some people off.
-------------------- dar Posts: 95 | From michigan | Registered: Sep 2007
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pmerv
Frequent Contributor (1K+ posts)
Member # 1504
posted
I just found this very interesting conversation - and now it seems to be over. I have a few comments.
I agree with the person who said nonprofits don't ask the patients what to do. Nonprofits are businesses. They are supposed to have missions and a business plan. They are not democratically elected representatives of any patient group who take polls to decide what they should do next.
That said, when we can catch a breath, we try to encourage and work with new people, figure out where to fit them in.
Just because a group is nonprofit and Lyme-related, doesn't mean it can work with another nonprofit Lyme-related group. We have tried. Those of us with decades of experience in the field have a good idea of who our allies are. These are the people who share our values and who we can trust.
I posted something under the subject line "Divisions in the community" that might help people understand why the Lyme groups have irreconcilable differences. It makes everything more complicated and has set us back, but we need to accept the facts and get on with our work.
-------------------- Phyllis Mervine LymeDisease.org Posts: 1808 | From Ukiah, California, USA | Registered: Aug 2001
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posted
These divisions have gone on for too long and have hurt a lot of sick people.
If Sue Vogan continues to do this kind of thing on her show, no more guests should agree to appear on the show, and patients should boycott it. That will leave only the troublemakers and a very silly host. What is the deal with her and theralac anyway?
Posts: 8430 | From Not available | Registered: Oct 2000
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