Share Facebook
Crohn's Disease Forum » General IBD Discussion » CrohnsForum in the News


 
09-15-2010, 08:57 AM   #1
Chuck2008
Senior Member
 
Join Date: Dec 2008
Location: London, Ontario
CrohnsForum in the News

http://www.guardian.co.uk/science/20...ons-mms-bleach
09-15-2010, 09:19 AM   #2
Mary
Senior Member
 
Mary's Avatar
 
Join Date: Nov 2009
Dan was mentioned alot. How unfair. Then he shouldn't visit websites looking for advice.
__________________
Mary Mack

Diagnosed 10/2010 Mild Crohn's
01/2011 Severe Crohn's with fistula

Meds I was on-
Imuran

Current meds-
Pentasa
Humira 3/11
09-15-2010, 09:21 AM   #3
kello82
Senior Member
 
kello82's Avatar
 
Join Date: Nov 2008
crap!!

ugh nothing like a little bad publicity. now crohnsforum is apparently just a place of alternative treatment pushers.

this really pisses me off that he had to go and take this to the media.

http://crohnsforum.com/showthread.php?t=10917
__________________
It just takes some time,
little girl, you're in the middle of the ride.
Everything, everything will be just fine,
Everything, everything will be alright.

<3 Mik
09-15-2010, 09:36 AM   #4
Sue-2009
Senior Member
 
Join Date: Nov 2009
Location: Michigan
Come on...What a bunch of insanity! That is a terribly unfair column! Sue
__________________
Current Meds: Humira, Mercaptorine, Allopurinol, vitamins
09-15-2010, 09:36 AM   #5
Crohn's 35
Inactive Account
 
Join Date: Oct 2009
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.
09-15-2010, 09:51 AM   #6
beth
Senior Member
 
Join Date: Mar 2009
Location: United Kingdom

My Support Groups:
He also posted to the Ben Goldacre Bad Science forum.
09-15-2010, 09:51 AM   #7
Marsman
New Member
 
Marsman's Avatar
 
Join Date: Jul 2010
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
09-15-2010, 10:05 AM   #8
Cackman888
Member
 
Cackman888's Avatar
 
Join Date: Dec 2009
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!!!!
__________________
Diagnosed Crohns Colitis Nov 2009

Current meds - Pred FINISHED!!!!!, Asacol 400mg 8 times a day
Imuran 150mg daily

Last edited by Cackman888; 09-15-2010 at 11:55 AM.
09-15-2010, 10:05 AM   #9
Mayflower537
Senior Member
 
Mayflower537's Avatar
 
Join Date: Apr 2010
Location: Charleston, South Carolina

My Support Groups:
Wow, I don't get people like this. Whatever happened to "to each his own?" if you don't like something THEN DON'T DO IT.
09-15-2010, 11:39 AM   #10
David
Co-Founder
 
David's Avatar
 
Join Date: Feb 2006
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.
09-15-2010, 12:00 PM   #11
D Bergy
Senior Member
 
Join Date: Apr 2007
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
__________________
Nothing I post here is to be construed as medical advice. I am not a doctor or health professional.
They are simply my opinions.
09-15-2010, 12:09 PM   #12
David
Co-Founder
 
David's Avatar
 
Join Date: Feb 2006
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.
09-15-2010, 12:10 PM   #13
Jeff D.
Senior Member
 
Join Date: Apr 2006
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.
09-15-2010, 12:14 PM   #14
Rebecca85
Senior Member
 
Rebecca85's Avatar
 
Join Date: Apr 2010
Location: Nottingham, UK
I am thinking maybe we need a wiki on mms, then if anyone asks about it we can refer them to that.
__________________
Crohn's in the terminal ileum, dxed Jun '10

125mg azathioprine
4g Pentasa
09-15-2010, 12:16 PM   #15
David
Co-Founder
 
David's Avatar
 
Join Date: Feb 2006
Location: Naples, Florida
I am thinking maybe we need a wiki on mms, then if anyone asks about it we can refer them to that.
I think that's a wonderful idea Rebecca
09-15-2010, 12:19 PM   #16
Rebecca85
Senior Member
 
Rebecca85's Avatar
 
Join Date: Apr 2010
Location: Nottingham, UK
Okey dokey, one mms wiki coming right up! Though it may take a while, I think I need to do this on a computer not an ipod lol!
09-15-2010, 12:21 PM   #17
Jennifer
Adminstrator
 
Jennifer's Avatar
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.
__________________
Diagnosis: Crohn's in 1991 at age 9
Surgeries: 1 Small Bowel Resection in 1999; Central IV in 1991-92
Meds for CD: 6MP 50mg
Things I take: Tenormin 25mg (PVCs and Tachycardia), Junel, Tylenol 3, Omeprazole 20mg 2/day, Klonopin 1mg 2/day (anxiety), Restoril 15mg (insomnia), Claritin 20mg
Currently in: REMISSION Thought it was a flare but it's just scar tissue from my resection. Dealing with a stricture. Remission from my resection, 17 years and counting.
09-15-2010, 12:31 PM   #18
Crohn's 35
Inactive Account
 
Join Date: Oct 2009
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.
09-15-2010, 03:06 PM   #19
Absentminded
Forum Monitor
 
Absentminded's Avatar
 
Join Date: Nov 2009
Location: Bristol, United Kingdom
Just wanted to add my support for the forum.
'Nuff said.

Lucinda
__________________
Lucinda x

Diagnosed: July 2009

Resection and removal of Enterocutaneous Fistula: Jan 2014
Pelvic infection Drainage: April 2013
Ileostomy reversal: February 2013
Ileocecal resection and temp. ileostomy (Say hello to Norman!): Nov 2012
Current Medication: NONE!

Past medications: Humira, Infliximab, Azapthioprine, Asacol, Budesonide, Prednisolone, Flagyl, Cipro, Cholestyramine (Questran), Fortisips.
09-15-2010, 03:22 PM   #20
Rebecca85
Senior Member
 
Rebecca85's Avatar
 
Join Date: Apr 2010
Location: Nottingham, UK
OK, the wiki is available here: http://www.crohnsforum.com/wiki/Mms
09-15-2010, 03:28 PM   #21
Silvermoon
Moderator
 
Silvermoon's Avatar
 
Join Date: May 2010
Location: Alberta
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
.
__________________
My Story
09-15-2010, 03:32 PM   #22
Christy
Member
 
Join Date: Jan 2010
What a crock of

)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.
09-15-2010, 04:00 PM   #23
David in Seattle
Senior Member
 
David in Seattle's Avatar
 
Join Date: Feb 2010
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.
09-15-2010, 04:05 PM   #24
Rebecca85
Senior Member
 
Rebecca85's Avatar
 
Join Date: Apr 2010
Location: Nottingham, UK
Dan was mentioned on Rhys's personal blog.
09-15-2010, 04:09 PM   #25
D Bergy
Senior Member
 
Join Date: Apr 2007
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
09-15-2010, 04:18 PM   #26
kello82
Senior Member
 
kello82's Avatar
 
Join Date: Nov 2008
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......
09-15-2010, 04:22 PM   #27
saidinstouch
Senior Member
 
Join Date: Nov 2007
Location: San Francisco, California
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.
09-15-2010, 04:35 PM   #28
Guest
New Member
 
Join Date: Oct 2007
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.
09-15-2010, 05:14 PM   #29
saidinstouch
Senior Member
 
Join Date: Nov 2007
Location: San Francisco, California
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.
09-15-2010, 05:53 PM   #30
GutlessWonder86
Forum Monitor
 
Join Date: Jul 2010
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.

GOD BLESS. ~ GUTLESS WONDER
Closed Thread

Crohn's Disease Forum » General IBD Discussion » CrohnsForum in the News
Thread Tools


All times are GMT -5. The time now is 11:06 PM.
Copyright 2006-2017 Crohnsforum.com