Note to Administrators… Perhaps you should Ban Me

[CDResearcher]

Note to Administrators… Perhaps you should Ban Me

I find this very sad. I thought this was a forum where people having an interest in Inflammatory Bowel Disease could meet and exchange ideas and thoughts. I came to this forum to share my interests and ask the members for some help. I erroneously thought that members of the forum, let’s say Crohn’s Disease Group, would be interested in research on Crohn’s disease and might even be interested in having a way that they could actually get involved and support research efforts into finding the cause of Crohn’s disease and perhaps even a cure. I was apparently wrong.

Because I asked the members to consider helping our research to find the cause and cure of Crohn’s disease by voting for our research at the Pepsi Refresh Project (refresheverything.com/crohnsdisease or texting ***** to Pepsi ******), I was first “scolded” for asking the members for their help on my very first post and then my post was deleted.

Well, I disagree with the moderators and administrators of this site. I believe the MEMBERS of this forum do have an interest in the research being done on Crohn’s disease and I believe the MEMBERS would have an interest in supporting and voting for our research.

As such, in the interest of the MEMBERS, I am posting this message to you. I am also posting a support request in other relevant topic areas. If you oppose, which I am sure you do, feel free to delete all my posts and BAN me from the forum. Do you really think you are serving your MEMBERS by doing such?

Help us raise money for Crohn’s disease Research

Greetings. I am a biomedical researcher (Ph.D.., Microbiology) that has been working on the cause of Crohn’s Disease over the last 25-years. It has been my long held belief that some cases are caused by an infectious agent and current gene susceptibility studies support this notion. After leaving the field for several years, I have returned to resurrect these notions using the latest technologies available.

We are currently engaged in several efforts to find causative agents in Crohn’s disease including the search for specific agents by PCR as well as doing complete gene sequencing of the patient and all the bacteria and viruses in the gut in hopes of finding that unique “bug” in Crohn’s disease patients. We have grants pending with the Crohn’s Colitis Foundation of America, the Department of Defense (Inflammatory Bowel Disease is a priority disease of the military for 2011), The Broad Foundation, and other funding sources. These studies are expensive, costing approximately $15,000 per patient (or control).

We are one of a few groups of researchers actually looking for the CAUSE of Crohn’s disease. It is only by finding the cause that targeted and effective treatments for Crohn’s disease can and will be developed.

As part of our efforts to obtain funding for our research efforts, we are currently in a public competition for funding through the Pepsi Refresh Project. This is a public project whereby Pepsi will make an award to projects that receive the most public votes. There are no scientific or other review panels – money is given to those projects that get the most public votes irrespective of merit.

This is also an easy way that you, as Mr./Ms. Public, can help support research efforts. If you have an interest in supporting Crohn’s disease research and would like to get involved, please vote for us at:

refresheverything.com/crohnsdisease or by texting ****** to Pepsi (*******). You can vote for our research project twice by doing both.

Thank you for your support.

 

[My Butt Hurts]

The admin of the site is actually well respected by the community here, so by bashing her on this thread, you are already losing points as a newcomer.
You might want to message the admin or a mod privately instead of griping about it openly.

I agree with her request on your first thread. Kinda bad forum manners to put a link in your first thread. You should have known, especially with your 25 years of research in this area, to ask an admin before posting a thread of this type. She is just trying to protect the members of this site.

Are we all gung ho for research toward a cure? Of course we are. When it comes across as yours did, maybe we are a little wary.
It just sounded a little scammy or telemarket-ish, I thought.
I mean, how do we even know that we won't be charged $19.99 for sending that text? You know what I'm saying?

And awesomeness if it is real, but .. I just dunno.

Oh, you now have two identical threads up with one minute of each other. You might want to delete one of them.


edit - whoopsies.. now there are 3 identical threads. Eep!

 

[CDResearcher]

I have dealt and moderated many forums on many subjects over the years and have never deleted a post unless offensive or simply spam. Questionable posts were always communicated with poster before deleting. I feel it was inappropriate (and rude) to simply delete it with no comment or other communication.

I did not feel the post was inappropriate or anything else. In fact, I asked the admin if he/she/it could enable the external link for me.

The external link went to Pepsi, which is a legitimate site, which linked to the project facebook page and the research main website. Legitimacy could have been discovered with a few clicks, not by deleting. BTW, the text message was never included in the original post.

In honesty, I expect this post and my others to be deleted by admin anyway. I would expect nothing else. I have been shown no consideration before, why should I now.

 

[DustyKat]

I went onto the Pepsi site yesterday and couldn't find where to vote for your project. By that I mean, I found where to vote but couldn't find anything related to Crohns.

Dusty.

 

[rygon]

I think it looks very much like spam when you dont really introduce yourself, and post a link to a voting page straight away.
Being a mod at other sites yourself, you can easily understand how this can come about as iffy. Maybe if you said hi, replied to a few threads with general chitchat, help etc then we would have been less defensive

 

[Rob]

I feel u don't quite get it

perhaps if you posted up about yourself first
then mentioned you what you were doing in another post
then perhaps ask if it's ok to do what you did

we've seen all sorts of scams here
Inc "but it's legitamate!"

yep we all want a cure
but we also don't want to be told we are mean, spiteful or stupid for just blindly texting into something we don't know about

with how you hav reacted I know I won't be voting and I do believe you should perhaps have some time out to think about how you can go about doing this a bit better..........

I have no more to say on this matter

 

[CDResearcher]

DustyRat,

If you went to the Pepsi site (refresheverything.com) and searched for Crohn's Disease you would of found us.

Rygon,

Don't remember exactly what I said on my original post but it wasn't simply a link to the voting site.

ADMIN,

Maybe we both got off on the wrong foot and over-reacted. I apologize. How about you delete all my posts and we can talk about how we can maybe proceed in a mutually agreeable fashion? Your call.

 

[Guest]

I have dealt and moderated many forums on many subjects over the years and have never deleted a post unless offensive or simply spam.

coincidentally speaking of spam posts and deletion of such - i have just had to delete THREE identical threads of yours from this forum, all posted today.

actually, given that the content of those three threads was identical to the content also included in your post in this thread, that's four times you've spammed our forum with the same content today.

and then there's the issue of mentioning, rementioning, and yet again mentioning the text phone numbers.... (which i've blanked out).

if you truthfully have moderated forums and can spot spam a mile away, like i and most of our long-standing members here can, then you should be able to understand why your posts are being treated in the manner they are.

Questionable posts were always communicated with poster before deleting. I feel it was inappropriate (and rude) to simply delete it with no comment or other communication.

again, i refer to your claim of forum moderating experience - if this is genuine, then you should be aware of forum etiquette, or plain old manners if you prefer. joining a forum specifically to make one post (or repeats of the same post) urging our members to vote for you for something we do not even have proof of, is not polite. nor is it going to get you any brownie points here.

as one of our members has already pointed out, we have no proof that texting that particular number will have any impact on Crohn's research - for all we know this could be an elaborate story designed to line someone's pockets..

it would have been a much better start if you'd pm'd one of the staff to ask how best to approach this issue, and we would have looked into your claim and helped if we felt it was appropriate.

I did not feel the post was inappropriate or anything else. In fact, I asked the admin if he/she/it could enable the external link for me.

enabling external link posting ability is something that is a privilege for members who've made a certain amount of posts. it is not something which anyone, other than spammers, have ever asked us to enable before the entitlement period.

 

[Rob]

I'd say you would just call a typo but I say nay

don't go calling ppl rats mate!

I call for a ban dingbat

 

[David]

I live in Austin, Texas and will be coming to your office in a couple days because I have some absolutely amazing yoga mats I'm trying to sell for my non profit. I expect to be let in and allowed to talk to everyone without me asking permission from the department head, school administrators, or anyone else.

Wouldn't happen, would it?

You were given a chance in your original thread by dingbat, but you chose to ignore it or sarcastically reply with, "thanks for your support" though I couldn't tell if that was you being sarcastic or not.

When approaching a place of business or community gathering area, proper etiquette is to ask permission before any solicitation, whether it be for profit or not, for a variety of reasons I won't go into as I would hope they're common sense.

I think it's AWESOME that you're doing research for Crohns and pray that you have an amazing break through. But that doesn't give you a free ride to do whatever you want here. If you'd have taken 30 seconds to communicate with a staff member, I have little doubt that not only would you have received permission, but they probably would have been voting as well...

 

[Cat-a-Tonic]

I didn't want to get involved in this thread, but I do want to say that I now kind of want to buy a yoga mat from you, David.

Oh, and nobody better call me Rat-a-Tonic. ;P

 

[Guest]

i am absolutely sure the "thanks for your support" was sarcastic.

i am also intrigued by this yoga mat.. can i get one with DingRat embroidered on it, in purple, please?

 

[glum chump]

Dear CD Researcher:

I read your initial posting this morning, and I have to say, I was a bit taken aback by your email.

First, I would like to say that I fully agree with My Butt Hurts, DustyKat, Rygon, and Rob. I also very much appreciate Dingbat's response, and the clarification that was offered. I'm really grateful for the quick response of forum administrators.

The point that I'd like to add to the above discussion is that I was completely taken aback by the presumptuousness of your initial post, as well as the post in this thread. Just because I *have* Crohn's does not in any shape or form imply that I will support any and all Crohn's research. You did not write about what the working hypothesis is that you and your colleagues are pursuing, what initial studies have been done, where in the research and drug development process you are at, what publications you have produced that discuss some of your early questions (and where are they published), which government, academic, research center, and/or drug company you're associated with to undertake such research, whether you've filed an IND application, whether you've done any preclinical testing, and whether you've made applications to or received any funding incentives through government programs like scientific research and experimentation development. This is not an exhaustive list of questions, however, if you'd even filled in some detail of your work to date, your email would not have been so jarring to me.

You worked off an arrogant assumption and a linear thought process that amounts to or says "You have Crohn's, your life sucks, you will support any research into your disease (and not ask questions, potentially?) because you want to get better." In your 25 years of experience with people living with a chronic illness, I would hope that you've come to understand that our lives don't work off the simple lines/grid that you've laid out. As an active participant in my health care, and an active learner of my disease, its progression and the effects (short term and long term) of the drugs that are available to me, I don't blindly follow the "hurrah for drugs, any drugs" train. As a participant in research trials, I am particularly concerned with the ethics of the research, and the work that has been done prior to the research trial stage. I would absolutely not lower any of these standards to go vote on Pepsi's websites. For all I know, your research might involve boiling bat wings and feeding the water to people with Crohn's as a cure!

I think you could have exercised greater responsibility/accountability to people living with Crohn's, and I would have appreciated that you could have framed your request in a way that treated me (us, if I may speak for the broader community on this forum?) as complex, intelligent beings.

 

[2thFairy]

I'd like a yoga mat as well, David.

 

[David]

Hahahah, man, now I know what line of business I SHOULD be in. Alas, it was just an analogy and I don't have any non profit yoga mats available

*slowly strokes chin in thought*

 

[David in Seattle]

Something about flies, vinegar, honey... how's that go, again...?

 

[Misty-Eyed]

Glum made some extremely good points along with everyone else.

The fact that you still seem to be a completely anonymous researcher is also concerning. Us, as Mr./Ms. Public would probably find it very useful to know who 'we' a.k.a. anonymous group of researchers, actually are.

 

[fadingsun430]

I visited the site refresheverything.com/crohnsdisease and it seems pretty legit to me. I signed in with my facebook email and voted for Pepsi to fund $250,000 to Crohn's Disease research being done by Texas Tech University Health Sci Center & The Crohn's Disease Initiative, Inc.

 

[Entchen]

... I would have appreciated that you could have framed your request in a way that treated me (us, if I may speak for the broader community on this forum?) as complex, intelligent beings.

+1. Actually, +10. I agree wholeheartedly with your post. We would have no evidence of legitimacy without doing some looking ourselves (Googling both Texas Tech and the CDI.org website to check for consistency of names, and then visiting MEDLINE to read abstracts/papers, for example). Of greater importance: it was difficult to read any of the posts without sensing a lack of respect for members and admin.

Signed,
Dr. "Q. Public" (harumph)

 

[CDResearcher]

“Maybe we both got off on the wrong foot and over-reacted. I apologize. How about you delete all my posts and we can talk about how we can maybe proceed in a mutually agreeable fashion? Your call.”

Well, I offered an olive branch and we can all see how well that was accepted.

I am not going to address the posts above because I could not without being insulting and contributing to this nonsense. Most of the comments are completely out of context and reflect people making judgments based on other comments that are not accurate or reflective of the true nature or content of the original post that was deleted.

David in Seattle – Thank you.

Misty-eyed – I am the only one here that is NOT really anonymous. You can easily find out EXACTLY who I am. Would you be insulted if I told you how? Click on the link to the Pepsi site (don’t dare offend anyone by listing it again), find our research page, and then click on “Learn More” or “Find us on Facebook”. Everything you ever wanted to know, including who I am, is all right there for anyone to find if they really care enough to look.

Fadinson430 – Thank you

My last word…

I have been involved with Crohn’s Disease (CD) and ulcerative colitis (UC) since the early 1980’s. I do not have CD or UC (thank God) but do know or have met many patients. I do not envy any of you – I also work with tuberculosis and leprosy and would take either of those over CD any day.

I know many of you do not want to hear this, but other than yourselves and your family, nobody really cares. Most physicians and most researchers do not really have an interest in curing this disease- there is too much money to be made and too many behind closed door deals being made. Don’t believe it, but it is true. Speaking with a colleague of mine the other day referring to how CD patients are treated, he commented “how do these people (referring to the physicians) sleep at night?” (and he is a physician) The answer is easy, the make enough money to afford sleeping pills.

What you probably won’t believe either is that I am one of the few people that really do care, that really has an interest in solving this God-awful disease, and have absolutely NO ulterior motives. I have not patented a single research finding or invested in any company that deals with CD or UC. Try to find many who can say the same. I personally do not know any. Ask around, you will find that I am the rarity.

I came to this forum to ask for help. Why? Because I honestly want to help you and I believe I can help you. Egotistical? Yes. Look around and read. How much research is being done on the actual cause of the disease? Not much, it is all based on which poison they can give a patient to make them feel a little better, for a little longer. I believe the answer is in finding the cause, not a better poison that is treating the symptoms and not the cause. Not a single patient with CD has ever been cured.

I posted my original post (which now nobody really knows what was in it) anticipating some feedback. After all, that is what a forum is (a place to express yourself; a place to discuss and debate). Can you tell us about your research? Why should I vote for you? Would all have been welcomed and appropriate questions that would have helped and educated everyone. But, nobody ever asked and if you don’t ask…

Instead of a worthwhile discussion that could have benefitted all, we ended up in this worthless and meaningful mess. Why don’t you, why didn’t you, etc., but never looking back at yourself and saying why didn’t I?

What has happened here is actually very common and the reason I NEVER go to IBD-related forums, chat rooms, etc. I have met 100’s of IBD-patients over the years and you all seem so caring and understanding and almost, in my mind, noble as you tolerate so much pain with little complaining.

BUT, behind some anonymous name and all of a sudden you guys/gals seem to be looking for a fight. I always feel like I am walking on glass talking to anyone online and therefore I generally avoid it. Which is really too bad because I probably have much to offer.

Anyway, enough said…

I will take the high ground and again offer an olive branch:

I propose the Admin delete this entire thread: it is childish and makes all of us look foolish whether you realize it or not. Send me a PM and we can discuss the issue in private.

Alternately, simply delete this thread, say nothing, and be done with it.

Alternately, if either of the above is unacceptable, I will tomorrow delete all of my posts and you can continue this discussion all by yourselves.

It is your call but I have had enough of these childish games. It was an opportunity to help and maybe have a worthwhile exchange; it was your choice not to.

 

[David]

Alrighty, we've vented enough I think Now maybe we can practice some forgiveness. CDResearcher, I'm sure you didn't intend to cause a stir but hopefully you can see our perspective. And I DO think it's awesome what you're doing. If you'd like to contact Dingbat or myself via private message or the email contact at the very bottom of this page and start over, we'd be happy to talk to you and see if your goals and this communities overlap in a mutually agreeable way.

Thread closed.

*edit* Hahah, looks like we posted about the same time

 

[Guest]

the reason your 'olive branch' was ignored, by me at least, is because of the way you word your posts and your 'apology'. you are trying to include everyone who was offended (and rightly so) by your initial attitude, in the same guilty boat as you....

“Maybe we both got off on the wrong foot and over-reacted. I apologize. How about you delete all my posts and we can talk about how we can maybe proceed in a mutually agreeable fashion? Your call.”

we 'both' didn't get off on the wrong foot - you did.

i didn't over-react. i responded in a one-liner in exactly the same tone as you came in here with. and you obviously didn't like it. your reaction was immediate sarcasm, then a decision to spam our forum with three identical threads, and then this angry thread where you're acting all hurt and mentioning us banning you, followed by a sudden sorrowful post stating a joint apology is what's needed.

sorry - but life isn't like that. you can't go around causing aggravation like this to a whole community, then mumble something about being unfairly treated while holding a shaky olive branch out, then expect everyone to suddenly be your friend.

if you want to pm David, you may. i have nothing to say to you that i haven't said in here.