A bit of history:

When LymeNet first started in 1993, the World Wide Web had not yet been invented. Today everyone associates the Web with the Internet--one in the same. In fact, the total number of hosts on the Internet at that time was only about 25,000, and the only way for Internet users to obtain information on Lyme disease was to "telnet" in to our system and search our text database.

As Internet technology improved, we moved one step up to "Gopher", which was the text-only precursor to the World Wide Web that everyone uses today. Our systems ran on two small servers that were obtained from generous contributors at Sun Microsystems, and our connection to the Internet was via a 28K business dial-up line.

A few years later in 1995 we were running a web site which averaged about 300 ``hits'' per day. There weren't really any search engines in operation, so you just had to know our address ``www.lymenet.org'' to find our site. We started experimenting with Lotus Domino software to hold our informational database, and thus the beginnings of the ``LymeNet Flash'' discussion board. The ability for our users to communicate with each other and share their experiences proved to be the single most important feature we offered.

By year 2000, we had upgraded our servers with a one-time grant and upgraded our software with the ``Ultimate Bulletin Board'' forum software, and we averaged about 25,000 hits per day. This larger number of users required us to upgrade our Internet connection to a 384K business DSL line at a cost of several hundred dollars per month.

As of July, 2005, the statistics show that we averaged almost 200,000 hits per day, and that is on the same 384K business DSL line and old servers we had since before the year 2000! Over the years we pulled several tricks like implementing data compression, optimizing the layout of our web site, utilizing some outside services to handle some of our network traffic, etc. But we've been running the DSL line at near 100% capacity all day long.

There have been several suggestions about using third-party hosting providers, consumer-grade Internet service, etc. to save money. On the surface they seem cheaper, but the fact is that if you calculate the amount of traffic we pass through the system, the amount of data we store, and the cost of backups and mandatory server maintenance charges, it becomes about as expensive as running the systems in-house as we have for the past several years.

On a personal note, Marc Gabriel and I have spent countless hours over the past 15 years from original conception to what we have today. With a system that today supports several different Lyme-related web sites (with over 100,000 registered users on the LymeNet Flash forums alone), there is quite a bit of hands-on maintenance, late nights, and personal expense and sacrifice required to keep things going.

Why would we do such a thing for so long without any compensation? It is because we believe in what we are doing. I truly believe that the amount of benefit that so many people receive from the site justifies the back-breaking work of keeping everything up and running.

There have been mixed feelings about the proposal to charge money to support the bulletin boards. I think it's important that you know where the money is going, and where it is not going. We run as a non-profit organization, and we as system administrators never see a penny. One of the biggest expenses we have is for the Internet connection. Then comes ordinary administrative expenses (i.e. postage, etc.) to support the non-Internet endeavors of the Lyme Disease Network. Much of the expense of maintaining the equipment comes out of our own pockets.

We are very thankful for the many generous and loyal contributors over the years--they are the only reason we have made it this far. But as you can see from our growth numbers above, changing times require us to step back and find a way to cope what that growth. Unfortunately we just haven't been able to maintain enough ongoing funding from donations to pay for operations. By charging a nominal fee, we hope to generate a steady stream of income to pay for our Internet connection and equipment maintenance.

There are several outcomes which the LymeNet community can look forward to as a result of this funding effort:

1. We will upgrade our Internet connection to better reflect the daily demand for the site.

2. We will upgrade our servers to provide faster, more reliable and redundant service.

3. In the short term, we will upgrade our UBB forum software which should provide much better performance for things like the search feature which has been overloaded for so long.

4. Over time, we plan to upgrade to a more modern, feature-rich forum software which will allow our users to collaborate more effectively. Depending on demand, we may offer the capability to syndicate our forums through the use of RSS, and we may even consider allowing users to have a journal or ``blog'' on the system.

5. Reduction in ``trolls'' and other unproductive activity.

Despite all of this technology, our number one concern is to be faithful to our charter--to provide information and support to the community of people who have been affected by Lyme disease. We are always listening to you, whether you have 6 posts like I do, or 12,000 posts like some other long-time members do. We appreciate your loyalty and generosity over the years, and will continue to serve the LymeNet community as long as we are able.

Regards,

It is clear equipment and connections need to be upgraded but I think donations should remain voluntary.

I have been here a year and today was the first day I heard about financial problems and equipment problems. There have been tons of posts the last few months about search not working, the site being slow or being unable to connect.

I never saw a reply explaining the reasons to us and asking for money. If the facts had been presented I'm sure people would have stepped up with donations. It seems like we are being punished now for failing to donate to a fund drive we didn't know was happening.

I suggest presenting the facts about what we need to upgrade, What solutions won't work (so people won't suggest them), the costs and some immediate fund raising goals. Perhaps even daily or weekly goals would get us all motivated.

We all want Lymenet to stick around so give us a chance to help. I believe a goal based, voluntary campaign will work. I'm sure some people will do fundraisers with t-shirts, bracelets, ribbons or whatever to generate additional funds. Others will be able to write a small check, some will be able to write bigger checks.

When I've worked on a project for a long time and know it really well I sometimes forget that others may be clueless. I have to remember to teach them the basics that are second nature to me.

I just started learning about how this site works, tonight. I'm sure there are others like me who came here when their brain barely functioned. It took me forever to do a simple post since I couldn't remember what I was writing about. I could not handle complex ideas like how the site actually works. Fortunately I'm getting better and can now grasp more complex information so please keep the info coming.

It sounds like you have a good sense of the technical needs. Lets all work together to find a better solution to the financial problem.

I have seen posts from other users who have indicated they would be willing to contribute if the search function could be fixed. It's time for us to put our money where our mouth is!

This may be a stupid question, but is Lymenet set up to receive company matching contributions from corporations for those who are still able to work?

This is just an idea, but what about adding another forum for people wanting to sell things and charge them to post? People complain all the time about others trying to bend the rules and advertise something.

I'm sure there are Lyme patients who sell products which may or may not be Lyme related that would like to advertise here. The forum could appear on this site or be at a separate web address.

Is there a financial report for the charity available for public viewing?

Has the site considered applying to the United Way for funding or possibly the Bill Gates Foundation (that may not be the exact name)? Does anyone who posts at this site have grant writing experience?

If I had had a computer, maybe I would have found this site sooner and my hubby could have been diagnosed quicker.

There has just got to be a way that this can be worked out so everyone can continue to benefit from this site without having to pay to officially join.

There are already a lot of people who visit this site who are somewhat paranoid about sharing personal info about themselves and I think charging for the site which means ultimately collecting personal info will keep some people from participating.

Bea Seibert

[This message has been edited by seibertneurolyme (edited 05 August 2005).]

As far as how to finance the site, I think staying away from paid membership is the best thing.

1) The people that need help the most are probably first time users. It's a definite negative image to come across a "members only" information site. I believe the true spirit of Lymenet is to help all who need it.

2) I believe those who are getting a benefit are willing to pay accoring to their abilities.

Up until now, I believe very little has been said as to how much is needed to run the site. It's just been a fundraiser of "send what you can". Helping everyone understand the costs involved will bring more in donations.

I think an advertiser's section (as long as it is clearly kept out of the other discussion areas) could be a way to raise money and the grant idea is great.

I think for personal donations, some type of meter or progress bar at the top of each forum would work as a reminder to all how much money is needed to keep running for the next year.

That could be maintained now with a little manual labor by editing the graphic behind the "Flash Discussion" at the top of the page . How about something like this?

At any rate, your past efforts are appreciated! I know our family has gained greatly by having Lymenet here.
DadOf2

I just tried many times to send a donation by paypal....used the donation tab at the top left hand side of the general page.

It let me fill in how much I wanted to donate but then kept sending me back to the same page, over and over again. Thank heavens I didn't give my credit card number!

Please check this out, let me know if I am doing something wrong or if the button is screwy.

I strongly hope we keep this a free site. Your explanation helped...I didn't know how lymenet was in trouble or even was considering the current proposal.

LymeNetters are very generous and quick to respond to calls for help. I think you will find us all donating to keep it alive and free. It is always helpful to keep people in the loop, informing them on problems, asking for solutions, etc. I think this was quite a bomb dropped on us. It did get attention, but perhaps in a harmful way.

Sorry, and best wishes to all of you.

Not to be pessimistic, but what happens if some of us pay the required fee and $7500 is not reached. Is the money refunded? Does it go to another lyme charity?

Lymenet has been a safety net for me. I found a doctor, a support group, some great advice, some things to ponder, and have gained strength from the wise courageous members who post here.

quote:

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Originally posted by tbrown:

On a personal note, Marc Gabriel and I have spent countless hours over the past 15 years from original conception to what we have today. With a system that today supports several different Lyme-related web sites (with over 100,000 registered users on the LymeNet Flash forums alone), there is quite a bit of hands-on maintenance, late nights, and personal expense and sacrifice required to keep things going.

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Thank you, Thomas, for all your efforts and for providing this summary of Lymenet history.

But I now find myself a bit confused--does Lymenet have its own server(s) or is Lymenet sharing servers with other Lyme related web sites?

If we are sharing with other sites, are they also aware of the pending financial crisis in keeping things going? What ideas do they have for fundraising?

I'm sure something will work out that Lymenet can remain on a voluntary contribution basis. Afterall, its been functioning that way since 1993.

Or do you mean other Lymenet pages?

Are donations to Lymenet used to support those other sites?

quote:

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Originally posted by tbrown:
With a system that today supports several different Lyme-related web sites (with over 100,000 registered users on the LymeNet Flash forums alone), there is quite a bit of hands-on maintenance, late nights, and personal expense and sacrifice required to keep things going.

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Are we on a shared server? Or does Lymenet have its own dedicated server?

It really would help to see that budget.

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Tabby

How is the money spent each year?

Seems like an AWFUL lot.

Has there been a real comparison between "in house" servers and leased server space. Many server companies provide FREE or heavily discounted space to non profits. And their prices even for HIGH use, big bandwidthm heavy traffic sites are far far lower than $5000 or $7500 a year. WAY lower.

And that includes bells and whistles, backups, maintenance, storage space.

Fair is fair. Ask for donations, declare a crisis, time to share some more information about just what costs so much to run this site.

I think it is a huge mistake to charge for access. Denying service to newbies will turn this place into a big chat room for a few old timers, sadly that is one of the problems here to start with.

As to the big "troll problem" well it looked to me like the "problem" was caused by troll hunters not trolls.

Just my two dollars worth!

quote:

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Originally posted by tabbytamer:
IRW2B--that's how I read the post as well.

Are we on a shared server? Or does Lymenet have its own dedicated server?

It really would help to see that budget.

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--My reply- Comments like the one you posted (below) to the members here, who have
legimate concerns and questions, is uncalled for.. in MY opinion.
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tbrown
Administrator
Posts: 10
From: Raleigh, NC
Registered: Oct 1993
posted 09 August 2005 01:22

It is discouraging that no matter what you try to do as a positive step will eventually be negated by some cynic who will invariably find something wrong.

Who would really be naive enough to think that all 6882 registered users would really
donate $25 to total tens of thousands of dollars in net donations for LymeNet?

Further, who really believes that if such a strange thing were to happen that we have such poor ethics and would actually keep that money? Sheesh...

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AND Admin said...

"***We are always listening to you***, whether you have 6 posts like I do, or 12,000
posts like some other long-time members do."

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Actually... I don't think people WERE listening. We kept asking for help and offering to help, over and over again.. for months.

If they HAD been listening... you wouldn't be here now.. Lou wouldn't have had to come back.. Jennifer wouldn't have had her feelings hurt.. the owners could be taking care of other business... and this whole situation could have been avoided.

And the biggest tragedy that happened here would NOT have happened.

If someone HAD been listening ... MANY people would have continued to get help here instead of leaving LymeNet even MORE hurt than when they came.

You, Lou, and others are not the only ones dealing with the results of this mess because NO ONE was listening.

Where do you think the sick people went when they couldn't get help here?

Thankfully, long time members all pitched in to try to help sick patients behind the scenes.... and they also spent countless hours trying to save this board... because...

NO ONE was listening!!!

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EDITED-

SteveinMinnesota- I just edited the post. So sorry... I was told about the admin's post VERY late last night. I am sure my feelings were not clearly stated.

I hope they are now.

If I were to guess, I'd say TC is standing up for the rest of us, like she always does.

When I saw Mr. Brown's reply to Tree last night, I've got to say, I was offended. Extremely.

I emailed Tom this AM but, based on Tree's replies, Tree responded and did not take it as a slap in the face.

I know Tom very well ... he's done nothing but provide support to LymeNet and the victims of Lyme and other TBD's for years.
We're just seeing some frustration here by everyone, including Tom, who is taking some unwarranted hits for simply trying to help.

Can you all help calm things down?
I'd appreciate your help and support ... OK?

I believe Tom was just pointing out that it's unrealistic to believe we would get 6800+ users to donate $25 each. Here's the reality ... The last time I did a LymeNet fundraiser, in 2003, I got ONLY 98 donors ... very disappointing! At the time we were still able
to make our $5K target because of a few VERY generous donors who sent in many $100+ and in one case $1000. In running that fundraiser, we emailed my family, friends, my former IBM employees, Angela and my high school alumni, the members or our church and every one of the 4000+ LymeNet registered users. That, my friends, is reality.

Now, could we please stop nit picking and help one another.

I need a little time to wrap up some critical issues on another volunteer organization that I support, then I'll kick-off the LymeNet 2005 fundraiser ... probably early next week.

Let's take a bigger view of the world ... there are charities out there that bring in millions of dollars a year, have paid staffers, plush offices and blow half the money they get on perks. We, at LymeNet, are simply trying to raise $7500 ... in perspective, it ain't much but it will keep us running and allow us to make improvements.

Now, could you all simply help?

Thanks,

i will not be a ravel rouser, and I have not posted much on lymenet the past year.....

i have been very disappointed with it after you left and found I was unable to help anyone here...that was the sad reality.....

tincup and mnay others left lymenet one by one by one... I was one of those ..who only came back by becknoning calls of old members who remembered me and needed input for oregon specific things......
and would post very little for the past 9 months....

I came back about three weeks ago, at ellen lus request to help try to bring things around due to issues that were political in nature...needing help..from all lyme patients. I was glad to help but also very sad at the crap I saw....

then when they started talking about paying and all....we asked good questions that in my opinion are not nitpikcing....we have sick sick sick sick patietnts here...

I for one have over 200 a day in meds for my family....all 5 of us have lyme...

i no longer work my veterinary/microbiology job...
and to find i could no longer help lyme patients here without paying....how sad

tc, and the rest of us still have unanswered questions....

they have been glossed over and were called cynical...

am I?
Yes. probably ...watching my daughter nearly die, watching her nearly get well...watching her insurance drop her and watchign her slowly decline...yes..I QUESTION almost everything...

as a lyme patient...i advocate if I feel a doctor is hurting my family...as a lymenet frequent contributor I advocate for my family as well...

Thanks for listening...

In all due respect, I admire you personally and am glad you are back...

Thanks

quote:

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Originally posted by Lou B:
TC & everyone,

I emailed Tom this AM but, based on Tree's replies, Tree responded and did not take it as a slap in the face.

I know Tom very well ... he's done nothing but provide support to LymeNet and the victims of Lyme and other TBD's for years.
We're just seeing some frustration here by everyone, including Tom, who is taking some unwarranted hits for simply trying to help.

I believe Tom was just pointing out that it's unrealistic to believe we would get 6800+ users to donate $25 each.

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I believe Tom was just pointing out that it's unrealistic to believe we would get 6800+ users to donate $25 each.

And what I meant (((Wasnt Donations))) it was about charging not donations thats what I was talking about and I thought that was clear.

Misunderstandings S**k
Tree
Its all mute now since you guys scrapped charging.

Link where all took place.
http://flash.lymenet.org/ubb/Forum3/HTML/013337.html

I'm now going to close this Topic since charging is no longer in the plan and charging never should have been in the plan. A bad idea that we've now thrown in the dumper and flushed down the pipes!