Crohns and Colitis Foundation Survey

[nancyl]

Hi all,
I'm not sure if anyone is interested in the survey the foundation is conducting to help with research on IBD. I just received an email pertaining to the survey. I guess I must have registered with the foundation. It does sound interesting and perhaps a way to get our information out there. They will do follow ups for information periodically.

http://cgibd.med.unc.edu/ccfapartners/


Nancy

[JLH]

I was excited to receive an invite but disappointed not to be accepted. Only UC, Crohn's and indeterminate colitis were wanted.

[Zizzle]

Their program sounds very familier to our forum! It's total BS that they won't accept people with our diagnosis. CCFA needs to recognize and study MC too!!

CCFA Partners is a new and exciting program that partners CCFA with IBD patients in an online community. By using the Internet we can rapidly and efficiently collect information on IBD patients from across the country in order to learn about the impact and health status of IBD patients.

The registry will focus on the health of IBD patients, their diet, prevention activities, and current treatment. By focusing on reports directly from patients, this initiative will be an important addition to many of the other clinical research projects supported by the CCFA that have relied mainly on reports from physicians.

Over time we will also provide you with tips for better health and prevention of complications that you can share with your doctor to see if they are right for your situation. We may ask you if you'd like to be part of other special surveys or research studies.

[sarkin]

I have to say, "Over time we will also provide you with tips for better health and prevention of complications that you can share with your doctor to see if they are right for your situation" sounds like a giant opening for advertising products to UC/Crohn's/other-colitis patients. Kind of like RealAge - they provide cute little sound-bites of health advice, gather info about people's health interest, and then send "helpful info" about various things, most especially d.r.u.g.s.

I do think we should all inquire as to why they are not interested in us, however. I did ;)

--S

[tex]

Same song, 5th verse.

http://www.perskyfarms.com/phpBB2/viewt ... light=ccfa

http://www.perskyfarms.com/phpBB2/viewt ... light=ccfa

http://www.perskyfarms.com/phpBB2/viewt ... light=ccfa

http://www.perskyfarms.com/phpBB2/viewt ... light=ccfa

Tex

[Zizzle]

Sounds like y'all need a lobbyist in Washington...ME!!

[tex]

It does appear that way. With an ambassador already on board, I'm not sure if we should apply for tax-exempt organization status, or just declare ourselves as an independent nation, and petition the government for recognition.

Tex

[sarkin]

Oh, goody! Maybe we can declare independence from GI doc tyranny, while we're at it.

[TooManyHats]

It does appear that way. With an ambassador already on board, I'm not sure if we should apply for tax-exempt organization status, or just declare ourselves as an independent nation, and petition the government for recognition.

Tex

I vote for independent nation!

This sounded interesting until I read this:

To be eligible to participate, you must have been diagnosed with Crohn’s disease or ulcerative colitis.

Like we don't exist or count! Oh, that's right, MC is a minor inconvenience. Surely I'm doing something wrong.

[Gabes-Apg]

as long as the independant nation accepts expats from across the ocean.


4 months ago an ex nurse, (coeliac) opened up a store called, totally gluten free here in my town. Thanks to my prompting she is now stocking ALL the products i used to have to buy online from 2 different online retailers, she has even coordinated a local bakery to be certified, to make various GF/DF products (unfortunately not SF)
this outlet is way better than any of the stores in Brisbane (3rd largest city in Australia)

anyways... she gives me 'coeliac' card 10% discount even though i dont have the card as the australian society does not recognise MC, we have discussed the shortcomings of the society for IBDs like MC (not just the australian one)
and similar to my ponderings in the bad doctor thread, we have joked about why would anyone claim to have intolerances, i.e. pay higher price for foods and ingredients, give up favourite foods, take aways, and eating out etc unless there was a bloody good reason to do that !!

[TooManyHats]

anyways... she gives me 'coeliac' card 10% discount even though i dont have the card as the australian society does not recognise MC, we have discussed the shortcomings of the society for IBDs like MC (not just the australian one)
and similar to my ponderings in the bad doctor thread, we have joked about why would anyone claim to have intolerances, i.e. pay higher price for foods and ingredients, give up favourite foods, take aways, and eating out etc unless there was a bloody good reason to do that !!

[tex]

as long as the independant nation accepts expats from across the ocean.

Sure - why not. We're an internet-based family - we might as well become an internet-based nation.

Tex

[ant]

UNoPP


best, ant

[sarkin]

Our flag is going to be awesome

Love,
Sara

[coryhub]

Why is it that everything is geared towards ulcerative colitis? I could find very little information for MC until this forum. My doctor said I have a mild to moderate colitis but to me it feels like there is nothing moderate about an incurable disease. I find myself bottling up so many grips and thoughts and complaints because I don't want to burden my friends. I feel embarrassed to talk about my disease & I can't talk about my bowel movements to others. Yet on this site everyone talks about the consistency, color, and frequency of their BM's. On this site I'm not considered a hypochondria claiming to have some fancy name disease. Here I'm legit. There are others who suffer, understand and share expecting nothing back in return.