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Lyme Disease Community
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Avatar universal

Just received something from MedHelp support

I didn't realize this---- (probably didn't read the 'rules' carefully enough)---- so it's 'my bad'.

The information was nicely worded and the pertinent part is:

" You may not be aware that MedHelp has a policy of not permitting links to other sites without prior consent.  In addition, MedHelp does not permit links to other message boards. "

So, I'll refrain and if I think a person should know of an outside link---- I'll send a private message. (I assume that's o.k. for MedHelp)

I'll have to ask them (I was told I could ask questions) if that includes links to PubMed etc.

Has anyone ever received a warning for posting links to PubMed or newspapers etc? Just wondering.

21 Responses
Avatar universal
Yeah, that's their policy.  They don't seem to police the PMs, tho.
428506 tn?1296557399
From my past experience, I think they mainly don't want you supplying links to other medical community sites.  So, for example, linking to LymeNet would be something that they would likely police.  I once got a similar message from them for suggesting the "find a doctor" forum on LN.
Avatar universal
"I once got a similar message from them for suggesting the "find a doctor" forum on LN. "

Sigh.
Avatar universal
Yes, I have gotten similar messages.  A moderator explained they don't mind the occasional link to outside reference material. I haven't experienced any issues posting a link to an important article or a medical study.

They don't like repeated posting of the same link (which got me in trouble... I kept posting the Burrascano symptom checklist) and they don't like posting links to anything that might compete with this site.

I have had no problem when I describe how to get to something without posting the link.
Avatar universal
MedHelp 'owners' have the right to monitor their site-----I have no problem with that----  it's theirs. But I wonder why Burrascano's Guidelines would be a no-no.
Avatar universal
dunno.  doesn't matter.  mom and dad have the car keys, and if we want to use the car Saturday night, we have to behave reasonably well.
Avatar universal
That's what I said. Just wondering. (grin)
707563 tn?1587576687
Hi everyone -

We just want to clarify this for people. You can post links to other sites so long as they are informational, and not spam, porn, anything illegal, or directly to another message board. If you find something on a site that has a message board, we just ask that you not link to the message board, and only include the link to the article on that site.

Let us know if you have any questions.

Emily

Avatar universal
Hi!  Are you our new mod?  We haven't one for AGES!
Avatar universal
Hi--- glad to see that it's a 'real' person' answering and thank you.



Avatar universal
Hi - all the mods here are "real people." :)  Due to the size of MedHelp, we're not always as active in every community as we might like. If you ever have a problem you'd like reviewed or have a question, though, feel free to use the "Report" button, send a private message to any of us, or use the "Contact Us" link at the bottom of every page and we'll be happy to get back to you.
Avatar universal
Thank you!
Avatar universal
Question for you, brought to mind by Ricobord's comment above, about having gotten a reprimand for posting a link or reference to Burrascano's 'Guidelines' too often.

Dr Burrascano (an MD) is well known in the Lyme field, and he has written (and revised and added to) his thoughts on the topic over time, which writings are posted at ILADS -dot- org.  ILADS (International Lyme and Associated Disease Society) is a voluntary group for MDs who see Lyme quite differently from some other voluntary groups.  ILADS is not a commercial venture selling vitamins or advice ... their website is open and free to everyone.

Burrascano's Guidelines are well known and respected view of approaches on diagnosis and treatment of Lyme and other tickborne diseases.

Would you post here to let us all know what the rule is that posting a link to the Guidelines is a blockable offense?  I'm not the only one with this question.  It may be that the mod who objected thought it was a book or essay for requires payment to access, but it's not.  

Thank you.
Avatar universal
@Jackie------ until you get an answer from MH perhaps this might help clear it up. (I had the same question written out and ready to ask but MAYBE found the answer. I didn't send that question.)

There are many online help forums that  post the Burrascano Guidelines and perhaps rico posted one of those. (Lymenet is just one of them).

Perhaps if rico had posted from the ILADS site itself it might not have been 'flagged'. (I don't think the ILADS has a 'forum'.)

I don't know----- but it sounds like that might be the work-around that complies with MH yet still offers his Guidelines to people here.

I hope MH will answer yay or nay on this.
Avatar universal
Hmmm, doubt it.  No reason to link to another website to get to Burrascano's posts.  In fact, unlikely.  
Avatar universal
Perhaps your browser gives 'hits' on Burrascano in a different order---- it happens.

My browser lists lymenet.org at the top every time. If I click on it a pdf of the Burrascano's Guidelines loads. But the url still says 'lymenet.org so it might get flagged. So if a person were to offer that url on MH ....... maybe?

The next hit is ILADS which is one you recommend. That's the best one and I doubt if it would get flagged.

Then there are a gazillion other hits----some blogs, some web sites that sell 'things' like supplements and Rife machines (!) and have ads associated with them. I don't know if MH would flag them because they're not 'strictly' a online help forum. But they do have ads.

Avatar universal
Hi Everyone,

I just wanted to pop in and answer your most recent questions.  I haven't researched any of the above information and I will do that, but wanted to get back to you. If Ricobord (or anyone) posted the same link over and over, that could be considered "spam" and that isn't allowed at MedHelp.  Also, if a link is to a site that has a message board or forum, that also isn't allowed.  

We also don't allow people to solicit for or advertise a particular product.  If one of you mentions something that helps you and you provide a link to that product, that is allowed.  But often times we deal with people who are very clearly trying to sell a product and that isn't allowed.

Again, to reiterate what Lira and Emily have already stated, should you ever have a question, please feel free to PM one of us or use the report feature and we will then review a thread or a post or a link.  

I will research the above mentioned issue and see what I can find.  If I find anything different than what was mentioned above by other members or what I have mentioned, I'll report my finding to help clear things up.

Hope this helps!

Steph
Avatar universal
Thanks for the follow up -- we (collectively) are sometimes not sure what the rules of the road are, so this is helpful.

Question about 'posting the same link over and over' -- the posted document in question is one of the signal essays on Lyme diagnosis and treatment, from one of the most highly respected MDs in the field.  To my recollection over the years I've been posting here, that link has not been posted very often, not even weekly ... so I am unclear on knowing how much is too much.

It would be a shame if we were unable to pass along such valuable information to new people coming here.  Can you confirm that if we mention his name and the name of the organization that hosts the place his 'Guidelines' document is posted, is that also considered spamming?  The website where the Guidelines are posted is operated by a nonprofit organization dedicated to advancing knowledge about Lyme, primarily aimed at MDs, but also readable by patients.  It's not a scam or a money-raising effort.

As soon as someone writes up better guidelines, we'll offer those instead, but when Burrascano really is THE expert and has useful data to offer, it seems perverse to block references to his work.  But if that's how MedHelp operates, please let us know, since we're not trying to cause trouble -- just to help fellow sufferers -- and if we know what the rules are, we'll be better able to stay within them.

Thank you.
Avatar universal
Hi again,

Just to clarify, and since I haven't had a chance to research anything yet, mentioning the link in a post isn't against the rules.  It's if it's posted many times in a day that makes us review things.  

And even then, if a current member posted in a situation such as that, they would either get a reminder about not posting links or a warning to not post them again.

Hope that helps!

Steph
428506 tn?1296557399

Dear All,

Please note that at the bottom of the community page, there are the "Health Pages" for this forum.  They may be a bit out of date, but the very first one "Lyme Disease Information and Physicians" does have a link to Dr. B.'s guidelines.

I never worked on the health pages, but I think that any member of the community can edit them.  I am not in a position to promise to do so, but one of "us" could take a stab at updating those pages and referring new posters to them for reference.

http://www.medhelp.org/health_pages/Autoimmune/Lyme-Disease-Information--Physicians/show/564?cid=94
Avatar universal
I'd never noticed that before---- so thanks for another way to access the Guidelines by Dr. Joe! (that's how he signs/signed his emails)

That link takes us to the ILADS site and even though I'm fairly competent in navigating I had to look a bit. (Modified to 'it's a mess'. LOL--- No offense to MH)

What I'm about to say doesn't apply to everyone here but some people (usually newbies) confess that they don't know how to search/navigate/otherwise do anything but post and answer---- perhaps an easier way is to just post the ILADS link to the Guidelines?

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