CCFA Symposium

Thanks IAS!

B

Yeah, quincy, I have to admit I was expecting to learn more from the meeting.
It's the first one I've heard of in this area (Western MA). Guess they hold more in the larger cities like Boston and sponsor "events" to collect $, probably for research.

I've learned more from people contributing to this forum than from any other source...including my GI.

Be extremely careful with this organization. I supported them initially, but it's just that they haven't come up with anything new in the IBD research arena. 40 years and still no progress or prevention in UC rates. I don't know how it's possible for an organization to thrive so long and still miss the mark. There's more suffering. There are more of the same immune suppressing medications. There are more victims of the same nonsense that they perpetuate daily. I wrote a post about them a few threads back expressing my dismay with them, but I'll sum it up again:
- They are heavily into pushing drug among those with IBD, and they do it without thinking twice about it.
- Their sponsors are the same pharmaceutical brands that most users take here.
- A lot of their keynote speakers or doctors have affiliations with pharmaceutical companies. I want to emphasize that their presentations and papers are not peer reviewed. Their purpose is to push out slightly better than placebo drugs.
- Not one cent of their research has gone into preventative care. It's no wonder that IBD rates are increasing dramatically worldwide.

I encourage people to watch the documentary Pink Ribbons Inc. It's the exact same deal, except with breast cancer. You'll learn what percentage of our money goes into actual "research", and not to the victims themselves.

Post Edited (StealthGuardian) : 11/9/2013 6:52:07 PM (GMT-7)

garylouisville said...
What is preventative care? As far as I know there is not one shred of real evidence anywhere of how to prevent UC from happening in the first place. Some may try claiming that a bad diet causes UC but there is absolutely no evidence of this. Zero. Zip. Notta. Now if you want to talk of preventative care in order to prevent a relapse and to keep you in remission there is all kinds of evidence of many different things you can do from meds to alternatives but not one of these comes with a written guarantee.

Really? Not one shred of evidence? How about the thousands of studies on PudMed linking common additives in food to gut permeability? How about the research on GMO foods and the active ingredient in round-up, glyphosate destroying lactobacilli? The proof is always in the pudding. There isn't some complex, out of the world reason that people develop diseases. It doesn't just fall from the sky into someone's lap. Why does "evidence" have to come from some profit driven authority such as the medical industry to be valid? You do realize that most, if not all, of their studies are manipulated to make the results look favorable, right?

Preventative care is closely scrutinizing all the factors that make someone prone to developing UC or any autoimmune disease for that matter. It's pouring money into things like epidemiological research and understanding why some populations get UC and why some don't. It's deriving patterns from that data and making strong correlations. Correlation does not equate to causation, but it gives us a better understanding.

The sad thing is that I used to be on the same boat as the CCFA. For the majority of the time I've been on this forum, which is around 6 years, I was heavily pushing pharmaceuticals. I can't in good conscience do the same anymore. It's simply not cutting it anymore.

Ambling is right. You are making your own conclusions based on circumstantial evidence at best. There is no definitive proof that diet or anything else causes IBD. Obviously something causes it, that's for sure. No one can dispute that, but you can't just take a bunch of loose facts, tie them together, and offer them as definitive proof. Diet and other environmental factors have been proven to have an effect on overall health and some things such as heart disease and cancer but there is still not one iota of direct evidence that it is the cause of anyone's IBD. There isn't even any direct evidence that a bad diet can predispose certain people with a particular genetic predisposition to getting IBD. It is certainly a theory just as there are several other theories but theories don't always get proven to eventually be true. Some do but many don't. At this current point in time you are just finding something guilty without a fair trial based on a bunch of circumstantial evidence. Sometimes people get found to be innocent later on when more facts come in. Sometimes we find that they really were guilty. You can't just assume you are right. Not every case winds up being like how they felt about cigarettes before more was known.

Hi Ambling.

There are a few problems that I see with your post. I'll try to address them in order:

Ambling said...
People hold 'ideas' about gut permeability, possible loss of diversity of gut flora, and many others, but as yet there is no demonstrably causal connection to I.B.D.

It is very difficult to establish causation in scientific studies, or any study for that matter. I think the best example I can come up with is smoking. We know that smoking correlates well to lung cancer, but we can't say that it causes lung cancer. Should we wait until the science comes out with a definite causation for this? It makes no sense.

The same logic can be applied to the realm of diseases. Low vitamin D levels, dietary intake of sugar and vegetable oils raise the risk of many health problems, including diabetes and cardiovascular disease. Why exactly can't this be extended into the realm of autoimmune conditions, particularly in preventative care?

You are also aware that certain dietary interventions reduce the risk of UC right? Why doesn't the CCFA mention the EPIC (European Prospective Investigation into Cancer and Nutrition) study, which took food diaries from 203,193 people and followed them for four years?
-Being in the upper quartile of intake of omega-6 fatty acids raised the risk of ulcerative colitis by 149%.
-Being in the upper quartile of intake of the omega-3 DHA, which is abundant in salmon and sardines, reduced the risk of ulcerative colitis by 36% – 77% after adjustment for omega-6 intake. (Apparently those who ate more omega-3s also ate more omega-6s.)

Ambling said...
I find the dogmatic pushing of ideas of any sort to be unpleasant and counterproductive. Endless posts, all basically the same, are really off putting.

My so-called "dogma" isn't nearly as harmful as the dogma that's pervasive in the mainstream medical realm. My goal is to spread information and expose the harsh realities of the current medical system - the CCFA is no exception here. Take a hard look at the statistics detailing the casualties in our efforts to treat medical problems. Deaths from adverse medical reactions are the fourth leading cause of death in the US. We're ranked 37th in WHO rankings and yet we spend the most on healthcare out of any country. It's only going to get worse before it gets better.

Ambling said...
Although patterns emerge, and information is gleaned, as yet there is no clear answer. Advances in treatment have been profound if not yet absolute.

We're never going to find a clear answer if we keep looking at everything else but the obvious. Occam's razor dictates that we should, first and foremost, be spending our resources and time on environmental and dietary factors that contribute to UC.

Ambling said...
Those deeply offended by the work of the CCFA, who feel they have a better idea, could perhaps start their own organization and show how it should be done.
You might call it "citizens rebelling against pathogens, profiteering and engineered eating", or CRAPPEE. ;-)

You'll be very interested to know that there are organizations doing it correctly. Keep an eye out for NuSi in the future.

Post Edited (StealthGuardian) : 11/10/2013 7:57:01 AM (GMT-7)

Ambling, we'll just have to agree to disagree again. :)

1) I'm not telling anyone to not seek out the CCFA for support. That wasn't my intention. There are some useful resources on the site, but like with all organizations that pledge to find the "cure", we have to exercise caution. We also have to be skeptical of the information given to us. Whether it comes from a higher up in the medical establishment or a snake oil salesman, both are equally susceptible to dogma and influenced by greed.

2) Smoking does not cause lung cancer. Not everyone who smokes develops lung cancer. People who don't smoke get lung cancer. Smoking, however, increases the risk of developing lung cancer.

I wish you well also. *hugs*

CCFA, once upon a time, I used to check that website for some information. Over the period of time, I learned, how pro-pharma stance they take (me being a pharma guy) and totally disregard other options someone could try. In short, CCFA lost my trust when it comes to 'balanced' all round information.

I don't bother much with CCFA anymore.