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About posts about petitions, surveys and other advocacy. Everyone please read!

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Lyme Disease
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Posted 4/8/2015 4:15 AM (GMT 0)
We recently got a little lost on this forum concerning posts about surveys, petitions and general activism. I was among those posters myself! blush

So as per the rules, we can't promote these kinds of things as the purpose of this forum is for support and resource sharing.


Rule 4 of the forum rules:
No advertising or links to advertising or "Spam" is permitted.
Advertising or spam is defined as posting a link for the purpose of selling, soliciting or promoting something.
Links promoting fundraising, advocacy, etc. are not permitted.Links to personal blogs/homepages are allowed in member profiles and signatures
Sharing of links to helpful and relevant web sites and resources is allowed if they are not used for a promotional purpose.

5. No posts regarding research studies, surveys, or clinical trials without prior approval from the forum administrator.

Thanks for your understanding!
Posted 4/8/2015 5:03 PM (GMT 0)
Ok , I understand that a rule is a rule, but how can we find out about ways to help things move for a disease that affect us all, for which we don't get proper treatment, if not by sharing links?

Thank you!
Posted 4/8/2015 5:13 PM (GMT 0)
Admin set up the rules, not us, so we have to abide by them too, even though we'd like to bring more awareness to Lyme. Facebook Lyme groups might be a source to find out about events.
Posted 4/8/2015 5:58 PM (GMT 0)
You can share links to other resources, just not to promote them.

For example, you can post the link to ilads.org because it has tons of information but cannot post a link to a petition they are sponsoring.
Posted 4/8/2015 7:07 PM (GMT 0)
Ok, thank you for clarifying that. I understand. I am sure admin has his reasons and it is nice of him to let us get together here. I just wanted to understand what our options are. I am not a Facebook person unfortunately but I still would like to give my support for petitions and stuff related to Lyme. Otherwise we won't make any progress.

Is there one place on the web where anyone can find out about any changes to the status quo and offer support to change it? All in one place without having to join multiple groups or FB pages? Thank you!

Post Edited (Simela1) : 4/8/2015 1:10:49 PM (GMT-6)

Posted 4/8/2015 7:59 PM (GMT 0)
lymedisease.org is a good source for Lyme-related info, petitions, surveys, etc.
Posted 4/8/2015 8:03 PM (GMT 0)
and be sure to leave the word "petition" or "survey" out of the title.
Posted 4/8/2015 8:08 PM (GMT 0)
Thanks, Trav and Revive!

I don't post petitions but if they are somewhere on the web, I would like to offer my support, that's the least I can do. Thanks for the info :)
Posted 4/8/2015 9:22 PM (GMT 0)
I think I need to apologise for posting a link to a petition about a misleading article the other day. Sorry. I didn't realise I'm not allowed to do this.

I'll try to do better in the future!
Posted 4/8/2015 10:52 PM (GMT 0)
But for Lyme, of all diseases . . . ?

M
Posted 4/9/2015 4:19 AM (GMT 0)
I think the Admin needs to change their rules for lyme disease. This is one illness that needs all activism, petitions, and research that it can get. And we need to be aware of all kinds of treatment options, products, and what is out there to help broaden our toolbox of treatments.

That's just what I think... As long as people aren't coming on the forum trying to sell products that "cure" lyme and really do nothing.
Posted 4/9/2015 3:58 PM (GMT 0)
No more flowers :( I didn't send you any yet AG - I was waiting to see when you were having a really bad day/time of things! :(


PS. I'm with LymePickle, all the other disease on the cover page are recognized, funded, treated, etc. EXCEPT this one!!!!!!!!
Posted 4/9/2015 4:07 PM (GMT 0)
Thanks for the thought Lovemychildren Mom! I tend to get very quiet when I'm having a bad time.

Do feel free to express your opinions to Admin. Things do change here -- look, we're even discussing medical marijuana now!
Posted 4/9/2015 4:13 PM (GMT 0)
I should have said IF you are having a bad time/day

Although, lately my every day is awful! I sure hope it is not for you.

Until I can get Andrew to 100% remission, my heart is just shattered in a million pieces...

So I'll watch for when you are quiet.

Really though, no more flowers? That was going to be my "thing", seemed to make so many people happy!

:(
Posted 4/9/2015 4:30 PM (GMT 0)
Gosh, I can't say I know what you are talking about with "no more flowers". What is it?
Posted 4/9/2015 4:54 PM (GMT 0)
AG - LMCM has been sending flowers to people when they're having a bad day...she puts a link in the post that takes you to an image of a bouquet of flowers.

That is still allowed isn't it?

Or is it under the rule of "no spam"?
Posted 4/9/2015 5:54 PM (GMT 0)
That is totally allowed!! It would only be against the rules if she were selling the flowers for profit or fundraising.

I think the rule is in place to stop members from being inundated with spam, fundraising, and activism pleas, so they can concentrate on support and information sharing. It also ensures that the forum remains neutral on different issues so that everyone feels welcome.

You can still post links -- just don't promote anything other than goodwill!!
Posted 4/9/2015 11:58 PM (GMT 0)
If you would like to see this allowed for Lyme, please email Admin! Just be polite and nice, as he is a wonderful man who has provided us with this space. He likely doesn't know much about Lyme I suspect - why would he? - so he doesn't understand how much we need this allowed.

As Mods, we are only rule keepers. We don't have nearly as much pull as you all would if most of us emailed him and asked politely about "allowing petitions and surveys for the sake of treatment improvements and changing guidelines."
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