Crohns and Colitis (CCFA) response

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JLH
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Crohns and Colitis (CCFA) response

Post by JLH »

"I’m sorry for the delay in response. I have learned from CCFA’s Vice President of Research and Scientific Programs that CCFA does not sponsor research specific to microscopic colitis since it is not considered Inflammatory Bowel Disease. CCFA’s research is focused on IBD – Crohn’s disease and ulcerative colitis. As you may know, we do provide information about microscopic colitis on the website for those patients who have been diagnosed with the disease and are unclear about the difference between microscopic and ulcerative colitis: http://www.ccfa.org/about/news/microscopiccolitis . As I mentioned during our conversation, much of the research that focuses on IBD, ulcerative colitis, can translate to helping patients with microscopic colitis. In particular, the research for newer and better treatments to decrease inflammation in the colon can be beneficial to patients with both diseases.



Regarding Enterolabs, at this time CCFA is not affiliated with or able to comment on the specific tests for microscopic colitis promoted by Enterolabs and Dr. Kenneth Fine."
JLH
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I sent this because it was the first one I found

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JLH
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Post by JLH »

I also emailed that Dr. Fine/EL does NOT diagnose MC but rather tests for sensitivities/allergies.
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tex
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Post by tex »

Hi Joan,

Thanks for a good laugh. I'm sorry to see that the Crohn's & Colitis Foundation of America is so screwed up that their "experts" don't even understand the meaning of the definition of "inflammatory bowel disease".

Here is the first paragraph on the Inflammatory Bowel Disease page for the CDC, (Centers for Disease Control and Prevention).
What is IBD?

Inflammatory Bowel Diseases (IBD) is a broad term that describes conditions with chronic or recurring immune response and inflammation of the gastrointestinal tract. The two most common inflammatory bowel diseases are ulcerative colitis and Crohn’s disease.
Well duh! It appears to me that microscopic colitis meets that definition of an inflammatory bowel disease, and obviously the folks at Northwestern University, Feinburg School of Medicine, Inflammatory Bowel Disease Center, agree with that interpretation, also, (from the link that you so conveniently provided). Which part of that definition does CCFA's exalted "Vice President of Research and Scientific Programs" not understand? Perhaps he or she would benefit from a remedial reading course.

Also, their name is Crohn's & Colitis Foundation of America. From the very first paragraph of the link that was cited in their response to you:
Less Common Forms of Colitis

Colitis is literally defined as inflammation of the colon. But it's actually a catch-all term that covers a wide range of symptoms, from intermittent, watery diarrhea to acute pain and inflammation. Ulcerative colitis is both the best known and the most severe form of the disease, but there are two major additional types of colitis -- microscopic colitis and ischemic colitis -- each with its own symptoms and treatment requirements.
Perhaps they would be better served if they changed their name to Crohn's & Ulcerative Colitis Foundation of America. Incidentally, those two additional types of colitis that they listed, (MC and IC), are also both inflammatory bowel diseases, by virtually everyone else's definition.

If their misguided interpretation weren't so pathetic, and self-serving, it would be funny, wouldn't it. Don't misunderstand me, they are certainly perfectly free to pick and choose which diseases they prefer to support, but the very least they could do is to learn how inflammatory bowel diseases are correctly defined, so that they can intelligently respond to questions that are submitted to them, and correctly state the reasons why they do not support research for various other inflammatory bowel diseases, and/or other types of chronic colitis.

Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
JLH
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My email to CCFA

Post by JLH »

"They are NOT diagnosing MC. They are testing for sensitivities/allergies.

I will support CCFA in a very small way, just the way you (CCFA) are treating MC, because of our friends' grandson's Crohn's.......

I would very much like for my emails to get to your VP. This one and the one from Northwestern. I only sent the Northwestern link because I found it first."
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