Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Disgusting! Same old, same old. Ignore the science, ignore the patients, blame the patients, etc., etc. Gee, I wonder who is behind this??!!
Posts: 3771 | From around | Registered: Mar 2008
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Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
Right, I wonder!!
Please everyone comment on the site using the link above.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
So sad that Lymenet is such a dead site now. One response to an important issue and opportunity to make our voices heard.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Abxnomore,
It's sad to see that you really believe and feel that ". . . Lymenet is such a dead site now."
Four hours and you declare it dead. It's not even noon yet on the west coast.
You've voiced that exact sentiment more than once lately in other threads / posts where readers were criticized for not being more activist in nature. Not everyone can. Some fight just to get through their day. Activism just is not always an option.
You may not find the kind of fast paced action here that you'd like but it is what it is, here to serve the readers even if they don't always reply to you.
But you don't know that they don't then take what energy they have and put forth their voice elsewhere. Many do. In their own way and time, as they can.
This is neither twitter nor instagram and there need not be a constant buzz. It's insulting and chastising to those here to suggest that is required.
This thread is still VERY fresh, just posted today at 09:41 AM - about four hours ago!
Just because there are few posts here, do not declare Lymenet a "dead site" - you have no idea how many may read this but not reply here.
Energy is limited, many have hand pain or trouble processing well enough to write a sentence. Or it may take them a week to do so.
Still, it's very important to still post things like this for people to read - even if they do not reply, don't count them "dead" - Not everyone has to sound off for the information to matter greatly.
I was glad to see many good & solid comments at the article's site. But no way would I be able to compose a good reply - my brain just can't do that even if I know all the detail, just can't communicate it.
My hands are throbbing terribly now just form typing this & it may be the only thing I can type all day. I know I'm not alone in that or the other issues that prevent communication.
Just because replies don't come, don't criticize the readers. -
[ 01-21-2015, 02:18 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
Every thing you said is true but it is also true that participation is way down on this site and many have moved on to other sites for a variety of reasons.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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posted
I agree it's almost not worth it to post when you get zero responces to serious questions or the only responce you get Is an "I don't kno" "look it up" or "ask someone else". When you do get that occasional good responce it's like hitting the lottery.
-------------------- T. Brown
CDC Lyme Positive Co infections? Who knows... Bands 18+ 30+39+41+45+58+66+ IGG 23+39+41+IGM Posts: 351 | From Boston MA | Registered: Oct 2013
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- It's really amazing that so much information is exchanged here and while it can be disappointing when we don't see a good exchange to things we post.
Still, Tbrown, many don't get the (or all the) answers they seek. There is just such complexity to all things related to tick-borne and stealth infections. Please don't take it personally. It just means no one happens to have an answer right then and there. And, so often, there just are no quick answers.
The "I don't kno" "look it up" or "ask someone else" replies, though, they are intended to make you feel better - to help you know you are being heard and they WISH they could help but just can't. They are wishing you well, still. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
There used to be tons of replies to any given post, support and suggestions and an interchange of ideas. Most people don't have the answer. If they did they would not be on this site.
But feedback and replies are few and far between now. You have been on this site long enough to see the difference Keebler. Now it take days for a topic to get onto page two. There was a time when it took only hours.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
Back on Topic:
Please comment on this article that is very critical of Lyme Disease, the third such one on The Daily Beast:
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- If anyone has the energy to find the contacts for the OWNERS, board of directors & managing editors of this publication, it may be interesting to find out who they are, what their connections are in relation to this pattern of striking down lyme.
As to if letters to them would help or not, understanding who they are would be first. The advertisers might also be helpful to contact. If someone might have the energy along this line.
"Where do they get their operating money?" is a major question to shine some light on if they are really open to the truth about lyme or not. This goes for most media and why the typical networks are not - big pharma runs them via advertising & donations.
And they get all their "medical reporters" from those who don't know the IDSA is so far off base regarding lyme.
Comments may get stuck at the article and not be seen by others. To find others, for a start, anyway:
posted
I was going to respond to that one,decided not to. Responded to the last two ignorant articles. There are sponge people who will soak up what he has said
and will have no opinion of their own, nor care to be truly educated. All I can say is let them get sick. It will get worse. It will reach more and
more people. It is a very complex illness. Let them drink and be merry and mock the sick. Their day is coming.
Posts: 294 | From southwest mi | Registered: Dec 2012
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Professional Journalism associations - I've often really wished I could help prompt the top lyme education & advocacy groups to offer (loss for words) . . . uh, just have to stop now. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
Please comment on this article that is very critical of Lyme Disease, the third such one on The Daily Beast:
posted
This is really depressing. Reading the comments was torture.
I completely lose hope after seeing things like this. The commenters were either total sycophants, angrily parroting the article ("Yea! This dumb lady just wants attention! Chronic Lyme isn't real!") or paranoid sounding whackos.
There was some buffoon there leaving links to Lymenet Europe. Rambling about different conspiracies and basically making us all look like a bunch of loonies.
This isn't isolated. There's a growing population of professional skeptics. Go to Reddit and search Chronic Lyme and read the thousands of comments writing us off as a bunch of Hypochondriacs.
People think that IDSA=science and science=uncorruptable truth. This couldn't be more wrong. But how do you debate someone that has actual "Scientific papers" and legions of doctors backing up the claim that Lyme is easily cured with a round of abx?
What do we have? anecdotes and a handful of doctors with a checklist?
I personally KNOW what I have is Lyme and coinfections. And because of politics, greed and flat out ignorance I'll die with it. Articles like this and the comments that follow depress me to no end. I'm not going to click on any more links. I've a hard enough time being positive as it is.
posted
Just Wanted to say I love this site...i was just lurking around for 4 years here when I could hardly spell my name.. then I joined... I like this site and all the hope and info I have been given freely!..... Love Chris and Thanks for tuning me in!!!! You were my awakeing.....And thanks for all the people who have posted a lot of replies.... I have read mostly all of them Posts: 66 | From Toronto Ontario | Registered: Apr 2014
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Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
Who wants to comment on this article? Highly critical of Lyme Disease.
poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
My experience in reading the comments to almost anything in public media is that the readers are ignorant, seem to be mad about everything, rude, confrontational. If this really represents the American people, we are in big trouble.
Yes, please do respond to these crappy articles. If the comment list is very long and very ignorant, might be better to contact the editors, etc instead. Doubting they read long lists of comments.
Posts: 2888 | From USA | Registered: Mar 2004
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Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
Thanks Karla L for taking the time to place such a well thought out response to the article in The Daily Beast. Great links and references that no doubt will be seen by the public and help open the eyes of many.
We know that Dr. Saunders has his own agenda but any chance to educate the public is a good one and one that we should all participate in if we want to make a difference.
posted
Your welcome! I really wish that I knew who was behind all of the recent articles denying the existence of chronic Lyme disease. I do hope that there are those (including the editors of the Daily Beast) who read the links and realize that there is lot of science supporting the patient's point of view.
-------------------- KarlaL Posts: 694 | From New Lebanon, NY | Registered: Dec 2010
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Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
I would like to know, too. I think any opportunity to make our voices heard en-mass and drown out the other side is an opportunity that we all should engage in.
There are many who read The Daily Beast and since Foster is a celebrity our comments will be seen even more so. Even if our comments help only one person, it's well worth it to pitch in and comment. It's an opportunity we should not let slip by.
It's unfortunate that many do not place their comments and out number the continual denial and mis-education of the public when articles like this appear.
Thanks to those who have. There's still time to do so:
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