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Crohn's Disease Forum » Parents of Kids with IBD » Research Study Hype and Click Bait


10-25-2016, 08:10 AM   #1
crohnsinct
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Research Study Hype and Click Bait

http://www.vox.com/2015/3/23/8264355...rch-study-hype

But not to get depressed...each failed study moves us forward. Just beware of research hype and click bait research reports on social media etc. Read with a discriminating mind.
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Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Remicade
Methotrexate (12.5mg wkly - oral)
Vit d 2000IU
Multi vitamin plus iron
Calcium
Folic Acid
Previously used - Prednisone, Prevacid, Enteral Nutrition

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohns
Methotrexate (15mg weekly oral)
Enteral Nutrition
Entocort
IBD-AID Diet
Vit d 1000IU
Calcium
Folic Acid
Previously used: Mtx injections
10-25-2016, 08:46 AM   #2
malorymug
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I love that researchers are thinking outside of the box and I'm happy they are sharing their thoughts and research with each other. I wish that the mainstream media wouldn't pick up on it so fast.

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Mom to: 15 year old boy
Crohn's in stomach, small intestine, large intestine, and perianal disease
Diagnosed April 2014, at age 13

Currently taking:
Remicade 10mg/kg every 6 wks
Methotrexate 7.5 mg/wk
Cipro
Augmentin
Miralax

previous meds:
6mp 50mg
Flagyl
Cipro
Prednisone 30 mg
10-25-2016, 09:18 AM   #3
crohnsinct
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Right? Small, out of the box studies may be important enough to direct future research but not current patient care. They becomes dangerous when the media outlets give then widespread attention and patients do not discuss them with their physician.

Here is another article.

https://www.verywell.com/why-not-eve...hrough-4099015

The American Journal of Gastroenterology. Just published a Negative Issue devoted to negative outcomes. Interesting.
10-25-2016, 11:28 AM   #4
my little penguin
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But there is a flip side
Sometimes there are so few folks with disease that any small study is welcomed and a major step up from single individual cases studies of ONE person
Media hype Also gets the word out so the general public becomes more aware of the disease even if the med doesn't truly help
Attention brings in funding which generates more research

No research or funding for something few people have and no one has heard of .

I think of studies as a single data point get two to agree and you only have a line
You need many studies done saying the showing the same thing to actual see a trend
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10-25-2016, 11:54 AM   #5
crohnsinct
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True for orphan diseases.

However, now I have family and friends telling me that Crohn's is simply a gut fungal issue and all I have to do is rebalance my girls' guts and they will be fine.

Awareness of disease...haha also reminds me of the Humira commercial that shows the person calmly walking through a building looking for a bathroom. O says, "trust me, no one with an IBD flare is that calm. We are all out sprinting for the bathroom...that is if we can even leave the house". That commercial makes it look like IBD is just a bathroom issue.
10-25-2016, 12:00 PM   #6
malorymug
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Ya. Folks I hardly know are sending me articles are the Crohn's cure. It drives me batty. And the commercials make Crohn's seem so simple

10-26-2016, 09:28 AM   #7
Jmrogers4
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I hate those commercials. I can recall running from one side of a stadium to the other trying to find an open bathroom no casual about it not to mention all the other symptoms of the disease but I'm all for bringing awareness and I think I received that study on the fungus no more than 10 times in about an hour. Just makes me wonder why if that's the case given we all eat the same thing in my house live in the same environment how come we all don't have Crohn's.
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Jacqui

Mom to Jack (18) dx Crohn's 2/2010
Vitamin D -2000mg
Remicade - started 1/9/14; 7.5ml/kg every 6 weeks
Centrum for Him teen multivitamin
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
10-26-2016, 11:09 AM   #8
Clash
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I see the flipside but I swear one more person sends me that fungus article along with their advice of some probiotic, aloe, diet, essential oil, Apple cider vinegar blah blah blah I'm going to lose my $#*+!
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Clash
Mom to
C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira
10-26-2016, 11:55 AM   #9
Jmrogers4
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10-26-2016, 12:11 PM   #10
malorymug
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Wait! You haven't cured the Crohn's with apple cider vinegar yet? ::grins::
10-26-2016, 01:17 PM   #11
Clash
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Naw...you know me, I'd rather just watch my kid suffer through a debilitating disease while I feed him all those pharmaceuticals!

My patience for these "well meaning" folks has long ago been eroded away. I think I become more blunt with each suggestion!
10-26-2016, 03:56 PM   #12
crohnsinct
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LOL! Thanks for laugh guys!

I just got an article delivered to my door about a chiropractor who cured his UC with a simple adjustment of one bone in his neck and for $2,500 each I can cure my girls to!

Love that we are loved but really?
10-28-2016, 01:23 PM   #13
my little penguin
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http://www.sheknows.com/parenting/ar...s-of-sick-kids

To send to all the "nice" people
10-28-2016, 03:29 PM   #14
Farmwife
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Naw...you know me, I'd rather just watch my kid suffer through a debilitating disease while I feed him all those pharmaceuticals!

My patience for these "well meaning" folks has long ago been eroded away. I think I become more blunt with each suggestion!
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I'm mom to............... Little Farm Girl 8 yr old
Ibd (microscopic)
(12/28/12),
dx Juvenile Arthritis
(12/13/13)
dx Erthema Nodosum
(8/13/14)
Bladder and Bowel Dysfunction
(10/14/13)
Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 4 wks
Azathroprine started on 10/9/15
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine
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