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Crohn's 35

Inactive Account
Thanks Chuck for letting us know. Welshboyo is just looking for attention, extreme attention getters are on to prove a point... He is an underaged male who is craving attention good or bad. Dan was a victim in the circumstances and still stands by his own opinions. Welshyboyo has taken things out of context and presented it to suit himself and get attention.

The negative aspect in WB life is in his future when his career takes a path, no one will trust him with company information. It will come back to haunt him..it always does.
 
It's disappointing to say the least. I agree with pens last paragraph.

As a side note, I have not been around this forum long, but i have found it both informative and supportive.

Andre
 
i knew he was a little trouble maker by his comments in the earlier threads.. .. that young fella has alot to learn about life, nobody in my opinion on this site pushes anything down our throats, its all about choices and opinions...


As a point of notice i would like to add that at thr time i did apologise to welshboyo for my outbursts and i wished him well, i genuinely meant that.... I also contacted Dingbat and explained that i had PM'd him and that i was aware i had broken some rules....

i just thought the attack on Dan was poor form, maybe i was having a bad day!!!!
 
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David

Co-Founder
Staff member
Location
Naples, Florida
I can see all perspectives here and it's a tough situation for sure. We all know that this forum is chock full of AMAZING, supportive, compassionate people who have nothing more than the best interests of other members in their hearts. Yes, it sucks when something you know to be positive receives negative publicity, but that is unfortunately the way of the world. If the pope got cancer and someone here cured it, SOMEONE out there would surely take issue for some reason or another.

I can also see the perspective of Rhys, the MMS skeptic. Could he have conducted himself a little better? No doubt. But he's 15 and we shouldn't be all that surprised that he's acting like a 15 year old :) While it's understandable that we feel defensive, when the time is right, we may want to search our hearts for forgiveness.

I can see the perspective of the staff here who handled the situation. I've been a part of a LOT of forums and I've never met better staff members. The folks here are so full of compassion, love, and support, it's incredible! When someone comes in that they feel conducted themselves in a manner unbecoming the overall vibe of the forum, I think it's understandable that they felt a banning was in order.

I can see the perspective of the people supportive of MMS. If something has worked for you, it's totally understandable that you want others to try it. When you see others in pain and you're a compassionate, loving person, why wouldn't you share your experiences?

I can see the perspective of the people against MMS. When presented with a lot of the arguments against it, one does indeed wonder if more harm is being done than good.

It's pretty easy to see everyone's perspective and why each is so passionate. What's hard is to be accepting of others perspective when that passion is within you. And its even harder to share mature dialogue regarding such a situation. And it's even harder still to come to some sort of mutual agreement based upon such dialogue.

Hopefully when we're ready, that's exactly what can happen here and we can turn what has been somewhat of a negative situation into something positive.

*hugs* to you all. :)
 
His claims that he was kicked off of the forum for warning people about MMS is easily proved wrong. I issued the first warning from the FDA concerning MMS one day after it was issued. I was not kicked off for posting this, or the many other warnings I posted.

http://www.crohnsforum.com/showthread.php?t=12030

I post any warning about food, drugs, etc I become aware of. These have included TNF Blockers, Flu Shots, Splenda, to name a few I remember. I am sure there are more than that. Whether I use them or not, I feel it is information that should be available to everyone. Even if I do not agree with it.

I have never pushed anyone into any treatment. It is my position that the treatment that works for you, is the one you should use.

I am apologize for my role in bringing negative attention to this forum.

Dan
 

David

Co-Founder
Staff member
Location
Naples, Florida
Dan, if you have been acting out of sincere, heart-felt belief that MMS is a potential positive treatment for people, then more power to you and you have nothing to apologize for.

At this point, I don't think any good can come from trying to prove who was right or who was wrong in the situation. We can argue about the past all day long and it'll still remain in the past.

What we can do is begin to move forward. We can take a look at MMS: the warnings, the positives, the anecdotes, the studies, and every bit of information available as well as what transpired here. At that point, we can formulate a plan on how to better present future information on MMS and other treatments in a way that is as comprehensive as possible while always keeping the health and safety of members as our top priority.
 
Hey Dan, you haven't done anything. This kid would have figured something to dwell on and get annoyed about which would have led him to getting kicked off the forum. So don't worry man. Also negative publicity is publicity and if the person comes on with a mind they will see how we really are.
 

Jennifer

Adminstrator
Location
SLO
This whole situation is extremely upsetting. I wasn't around during the "debate" (for lack of a better word) that people on this forum had with Welshyboyo about the MMS but I did read it and I think that thread should have been locked a long time ago. You guys shouldn't be surprised that someone would try to take this situation so far and now this forum has been given a bad name. Is it the peoples' fault who "debated" in that thread with this guy? No but some of you added fuel to the fire and I really think that this should be a wake up call to people on here to be more respectful of others' ideas and opinions and start using the report system rather than playing mod. That's all I had to say on this subject.
 

Crohn's 35

Inactive Account
Dan, you have been such a wonderful help to me and others. Dan helps out others on other forums which I am not at liberty to say but he is there for others, not just for himself. We all want information and you take what you want and throw out the rest.

Dan gives me information because I ask for it and truly grateful he took out the time to do what he can. People have come and gone on this forum and some are angry so they take it out on others, which we have to remind ourselves this is a forum in which people are very very ill and will do anything to feel better. Public opinions and their "beliefs" who hijack a thread isnt here for help.

There are many people who are seeking help and when you are ill or have questions, it is the best forum I know of that is there to help. :)
 

Silvermoon

Moderator
Ya know, I am not sure if it is true, or if it applies, or even what I am thinking right now... but a "quote" comes to mind...

"Even bad attention is still attention..."

Thinking about this in relation to WelshBoyo... well... maybe he is just looking for a bit of attention...and I hope he finds what he is looking for.

In regards to "our" site... well... if he brings about enough attention, maybe we will get a lot more visitors... we may have to be ready to weed out the "bad" ones.... but maybe it will bring some good ones along too... maybe even those who DO need support and decide to check us out....

It just saddens me that so many people have such "closed" minds... and that our friend, Rhys, doesn't realize that he was banned, not for what he posted, but his attitude and the way he went about doing so... I don't know that he was the only one at fault, but he was the one who 'pushed the envelope"....

Anywhos, thanks for the info, Chuck
.
 
What a crock of :poo:

)from the article:
...He followed the site for a while and noticed a disturbing undercurrent of people trying to push alternative medicines to members...
I don't post very often, but I have been lurking around on this board & reading since last year and I have NEVER seen ANYONE trying to PUSH any treatment ~ alternative or otherwise ~ on ANYBODY. In fact, the members here go out of their way to say "Hey, this worked for me, but always Do Your Own Research."

I am very grateful for Dan and each one of you who share your experiences so freely. Thank you all.
 
Dan was mentioned alot. How unfair. Then he shouldn't visit websites looking for advice.
I don't see any specific mention of Dan, am I missing something?

Unquestionably, the notion that anyone on this site is "pushing" anything other than open discussion is untrue.
 
Lets just say this is not the first thing on the web about it, but in the interest of not fueling this further, I am not going to post anything more about it.

The WIKI page concerning MMS was very well done. It presents both sides of the issue and I really could not have done it as professionally. I think you have a talent for such work.

Dan
 
hahah i posted 2 comments in there and people just cant give up on being dumb.
i used the situation that 2 kids are messing around and one dares the other to egg a car, and the kid does. mom finds out and when she confronts the kid who did the egging he points at his friend and says but HE MADE ME do it.
we all know from experience that argument doesnt fly with mom ;)
my point being, people are responsible for their own decisions.

people still disagree....so that means they wouldnt punish the kid who did the egging and only punish the one with the idea of it??

honestly......
 
I am greatly saddened by this news. You all know me as someone who tends to go down the traditional route and support the use of drugs over alternatives. However, I always have respected Dan's approach and disclosure of risks and considerations. I don't always agree with some of his beliefs, but I at least accept they can help him or someone else. This forum is a home to a lot of us when we need support and information. To have such negative press is disheartening.

Just the other day I was communicating with David about ensuring our drug topics were accurate because people here don't tend to have the knowledge gained from a life in science/medicine and I know I don't have the time or energy to ensure the information is correct. We decided to link all drug articles to their respective wikipedia entry to ensure all entries have some information. However, we also decided to keep the human facet to each entry and want the articles to be filled by users here because it is our experiences that matter most. Who cares what science says about a drug when we have so many people who have experienced these drugs first hand?

While I do feel our balance here tends to skew toward alternative options in our discourse, I never feel that mainstream options are shunned either. I think the imbalance in the discourse comes more from people running out of options and searching for answers in new areas and sharing their successes/failures, rather than coming from a belief that mainstream options are bad. In fact, most of us do get some relief from our treatment plans and so we don't have to talk about alternatives because we found something that worked in the first place. This place is such a welcoming and open place no matter how someone chooses to approach dealing with this disease.

Lets hope that all this article does is serve as a way for people with crohns to find us and use their own brains to decide that we are not zealots who only push alternative options. This could in the end serve as a way to spread knowledge of our existence, if people are willing to take a chance.
 
to reassure and deflate any stress surrounding this issue.... i just want to say a few things...

this ex-member is an ex-member for very good reason. as you all know, we are proud of the warm family atmosphere we have here, the care we show to each other, the friendship we hold out to anyone who comes here needing it. however, unfortunately, every once in a while, a public forum like ours will attract a different kind of person - one who is looking for a challenging heated debate - in my opinion, this is what happened in this case.

the member was asked politey to tone down his attitude on the forum, as a) he was being impolite, aggressive, and insulting, and b) many members were contacting staff expressing their upset at his posts.. he refused to comply, so he was issued with a 2 week ban.

at that point we were made aware of his public announcements via various internet sites of his moans & groans about how poorly he was treated here at Crohn's Forum, of course conveniently leaving out all mention of his inappropriate behaviour here - and just making it sound like we were totally at fault.

he may well have had some valid points about MMS, but in my opinion he used this subject as a vehicle initially to spark a heated debate here, then subsequently to air his anger to all who would listen, about this forum.

we kept a close watch on his activities, and to some extent we are still doing.

please do not worry about this situation.. it has been discussed at length amongst staff here, and we are quite assured that we acted appropriately - as always, with care for the majority of our members at the forefront of our minds.
 
I just responded to this article after reading it. I am greatly offended by the gall of Rhys, the author, and the commenters. With no experience in this community they jumped to the conclusion that we are a bunch of hateful, alternative treatment pushing, morons. I have nothing but respect for everyone here from the admins to the newest members. I hope my response conveyed that and the importance of what we do here.
 
I've only been on here a few months and I can only say good things about this site.

It is very supporting, encouraging to those who need it, educational, and in no way does it cram holistic treatment down anybody's throats. It's common sense really when you think about it....ALWAYS see your doctor when considering any alternative treatment.

With our ostomy newsletter that our group puts out we always print a disclaimer on ours to cover our butts: REMEMBER: Articles and information printed in the news are not necessarily endorsed by our chapter. PLEASE consult your MD or ET nurse for the medical advice that is best for you.

I can't believe this certain individual, Rhys, has issues with our forum. Hopefully, he'll get some counseling of some sort and get put on the proper meds for his mental problems.

Dan, you are nothing but a positive influence for many. THANK YOU FOR WHAT YOU DO. DON'T LET A SMALL MINDED PERSON PREVENT YOU FROM DOING WHAT YOU LOVE!!! oh, and I did promote this site at our meeting on Monday for new ostmate members if they wanted to find more information on IBD and ostomy care. :ybiggrin:

GOD BLESS. ~ GUTLESS WONDER
 

Jennifer

Adminstrator
Location
SLO
While I do feel our balance here tends to skew toward alternative options in our discourse, I never feel that mainstream options are shunned either.
I think one of the main reasons why that is, is because we come here for help like you said when other options don't seem to work but also because we don't want every single response to be, "hmm, interesting, perhaps you should contact your doctor." While in all cases yes, you should but we're here to help each other and we'll do it the best way we can obviously not by pushing any treatment onto someone but like you said, sharing our experience of what helped/worked for us. I'd hate it if every thread I made people would simply tell me to go to the doctor.
Me: "Hey, check out my new Gwatches!"
Poster: "Go to the doctor."
Me: "Aww."

I couldn't stand the mention in that article where it said that indeed we are not doctors. When you read the terms of service agreement it even says that the posters on here aren't doctors, not like that needs to be said (cept for legal reasons) because it should be a given. How lucky would that be to stumble into a forum full of doctors who were totally willing to help? HA!
 
"Welcome to Crohn's Forum! If this is your first visit, please check out our FAQ You will need to register before you can post. Please choose your username carefully - names with adult content may be denied due to certain inappropriate keywords being restricted. We are a community of friends, connected by our lives being affected by IBD - either personally or with someone we care about, and we welcome new members to the forum. We offer support, understanding, and friendship. However, please note we are not doctors, and any experiences, advice, and tips shared or given should be checked out with your medical care giver before acting upon - similarly Crohn's Forum is not responsible for any financial or physical outcome resulting from information given here. Our forum is heavily moderated, and any spam or advertising links will be removed and the user banned, without notice."


Rhys is just mad he got banned so he found a friend with an outlet and spun up a mess of crap. He's a 15 year old kid anyhow.

Some of us here really know if I'M the one saying this, then that REALLY means there's something wrong with that article :)
 
Nothing to be upset about. I am sure we have been slagged by a few people on the other side of the fence promoting cure-alls and being brought down off the soapbox they tried to set up here. I know I have seen a few in my short time here.

This is just the other side of the same coin.
 
Me: "Hey, check out my new Gwatches!"
Poster: "Go to the doctor."
Me: "Aww."

LOL

That is funny. I never thought of it that way, but it would be exceptionally boring wouldn't it.

Dan
 
That is funny. I never thought of it that way, but it would be exceptionally boring wouldn't it.

well, i'd like to agree with you, but i think you should go ask your doctor.... ;)


just to put things into perspective here... most 15 year olds i know think Justin Beiber is a really talented musician.

nuff said.

:devil:
 
Just to prove how darn old I am, I do not even know who Justin Beiber is. Maybe I am a little out of touch with modern culture.. LOL

Dan
 
I just googled it. I think I had that same hair-do in the seventies, when I was about his age. Gads!, they should have banned that hair cut then.

Dan
 
All I would like to say is that this forum is wonderful. I do with what I please with the advice. I think Dan and all of you are wonderful people. I told my GI Dr about this website. It gives me a wealth of information and mentally heals me! Thank you Dan and everyone here. I really think from the bottom of my heart that you are all great people just trying to help others.
 
thank you Mary :) and to everyone who has posted their support of this forum.

obviously, none of us like to see troubled times on this forum, and all our staff go to great lengths to keep this the calm and welcome place you all know and love.

there is a lot being said about our forum, most of it either untrue, or from lack of bothering to actually read any threads here other than the one about MMS.... we're being painted as actively pushing people to take dangerous substances - which everyone here knows is ridiculous.

Dan has simply posted his own experiences of using that treatment, sharing his thoughts as many of our members do - i am sure there are many things mentioned here that some people would not want to try, and some people might want to investigate further.... and i do think it should be taken note of that Dan himself posted the FDA warning on MMS some time ago.

i am absolutely sure this episode will be a storm in a teacup, it will blow over, but if in the meantime anyone is worried or upset, you are very welcome to pm either myself or David, anytime. :)
 

David

Co-Founder
Staff member
Location
Naples, Florida
Warning: if head in the clouds peaceful yoga talk bugs you, skip this post :)

It's incredibly heartening to see how much each of you care about this community and each other. And it's understandable that the 15 year old kid has been lashed out at. But in the end, he's a Crohnie. He's also just a kid. I remember when I was 15. It was such a hard time in life. I can't imagine being that age and having something like Crohns disease :(

I'm also guessing that he is reading this forum still and the comments being made. If he hasn't come to understand why he was banned at this point, he's not going to understand which is fine. That will come as he matures. But I just wonder if we might be able to find some empathy in our hearts and not lash out at him any further. What has been done has been done, maybe we, as a community can start to take the high road.

My personal suggestion would be not to comment at the Guardian anymore. We're not going to convince them of anything and they're probably not going to convince us of anything new. As such, if you feel anger or frustration or any sort of negative emotion, maybe think of letting it go instead of attaching to it further. Maybe turn the other cheek :) These are of course mere suggestions, nothing more :)

We'll probably close this thread in the not too distant future since we all know how we feel and we know how they feel. The anger and frustration evoked by this thread isn't conducive to what's most important and that's each of you healing or staying healthy.

*hugs* to you all :)
 

My Butt Hurts

Squeals-a-lot!
As one of the most respected members of the forum, Dan has nothing to apologize for.
Anyone on here knows to look into things before trying them, and ask their doctor before trying things, even an alternative therapy. The only exception might be a child, but a child should have the supervision of an adult on the internet. (Mine do, anyways..)
I hope that every member on this forum is proud to be a part of such a helpful community.
Yeah - I've seen a few bits of advice on here that is questionable, but everyone has to look into things for themselves before they just go and try it.
My dad takes paint of his skin with turpentine. Maybe that's not for everyone, but it works for him.
THIS FORUM HAS HELPED SO MANY PEOPLE!
^ That's what matters.

PS - Might I suggest that Rebecca changes her title under her user name from Senior Member to Wiki-Master or something even better? She rocks in the wiki department!
This disgusting article is no laughing matter, but when she popped in on this thread with a "should I make a wiki article on it?" it just made me giggle.

Justin Beiber: Hey CF guys, I heard you didn't like my haircut. What do you think of the new one I got just for you?
CF people: Go to the doctor.
 
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I am not ready for the Turpentine treatment either, but I know of a person using it for breast cancer. Not sure how that is working out presently, but Turpentine was commonly used in the past for many conditions.

There is a group out there that uses it for many different things, but they also use radium ore, and some things that appear too inherently dangerous for my liking. I do read their experiences. You never know where you can pick up information that may be useful.

I like the title Wiki-Master. It sounds very oriental, almost like a martial arts master or something in that vein. A jacket with Wiki-Master on the back is bound to command some respect. I have to go to the doctor now.

Dan
 
All I got to say is; I've suffered w/CD for 24 1/2 yrs+. Until I found CF I was pretty much on my own and knew only what my GI told me about treatments. My last flare brought up the subject of Remicade, Humira and Imuran. I had never heard of any of these treatments before and after reading up on them I was scared. At that time I think I'd have rather took my chances with surgery and about 18" of less intestine.
Thanks to the members of CF that came to my support and actually informed me of how these treatments worked for them or didn't and let me really know how the worst of the side effects they had experianced, I was able to make an informed decision of which treatment I would go with. Remicade has been a God-send to me and so has the Crohns Forum. This is my second family and because of my friends support I will give back to others so that they will feel that they are making an informed decision themselves.
I love you guys and this is the best place I could have found to help me.
I'm truly sorry that things went the way they did, but it won't bring this Forum down. People will come, get support, some will stay and give back, others will get thier support, find what works for them and move on. Those who stay will help others to find thier way to remission, ease thier fears, but mainly, find out that there are others who feel the same as them and that they no long have to feel alone.

CF is the greats internet support system around. Because of everyone who offers a kind word, a shoulder to lean on or advice of how to cope with Crohns.

Okay, thats all I've got to say other then- THANK-YOU CF for giving me back my life.
 
I have to say that I found the story to be SAD, however this is not everyones view on the forum and they have no idea who we all are. Yeah maybe we have never met in person but I personally can say that each and everyone of you on this forum is part of my family. You have all helped me and my daughter out so much, when we thought we just has no where else to turn. The amount of support this forum gives over powers anything anyone else can say. Unless you are in need of the support and advice you would not ever understand the whole meaning of the Forum.

Thanks everyone for your support!!! I will for one ignore this article going forward because I know the truth about the forum.

take care everyone
 

DustyKat

Super Moderator
I will not comment on the site at which the article is located simply because I do not believe the circumstances under which it was done. What I do believe is that WelshBoyo and those that follow his writings frequent this site therefore they will see my response here.

Firstly, the irony of this whole situation is that Dan, as he has already stated himself more than once on this forum, was in fact the original poster of the MMS warning that is the crux of this whole situation. Therefore in my mind it makes this whole episode a farce.

Secondly, the thread referred to, in which advice was said to be given, was quoted out of context. When read in it's entirety no such dangerous or irresponsible advice was in fact given.

Thirdly, as the name suggests this is a support forum, end of story. I am an adult and came to this site of my own free will as I am free to do on many support forums across the web. The information and support provided by this site is there for me to do with what I will. I am not forced into making decisions but rather given the means with which to help support my quest in making an informed decision. This forum is one part of that process. I have a right to access whatever information I choose and what I do with it is my responsibility and no one else's.

Lastly, Welshboyo it is with you that I have the most emotion. Am I angry with you? Am I upset with you? No. What I am is disappointed. Disappointed in your behaviour on this forum and disappointed in the way you have conducted yourself outside of the forum. That's what it boils down to WelshBoyo, behaviour. You were rude and inflammatory which is why I stressed the need for respectful discussion. You were so blinded WelshBoyo that you even attacked the one person that truly held their hand out to you. If you are mature and adult enough to critisize then you need to be adult and mature enough to admit to your mistakes. If you choose to take your own path and ignore the requests of others then you must suffer it's consequences.

I will say here and now that I do not respect the media and that disrespect is born out of experience. WelshBoyo, I would suggest that you learn your own healthy distrust of those that purport to be serving you in your own best interests. You are young and passionate and that's a fine thing, I see it in my own children. Pride is also a virtue, in many respects, but sometimes you just need to put it in your pocket.

Dusty.
 
ok - i think some fantastic points have been made here, and as with most issues like this, there will be lessons that we can all take away from this episode.

i agree with David that this thread should be closed now - we all have far more important things in our lives to worry about.

i want to thank you all again, for tackling this news with such dignity and thoughtfulness, and particularly for all the support for this forum that you have shown.

as always, i am proud to be a member of this place - you are all amazing.
 
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