It is part of the R&D cycle. If you think about it - there is little market for trying to turn a profit on us versus say a cardiac drug or a common cancer drug. They spend literally MILLIONS of dollars to develop a drug that may or may not ever make it to market. The fact that some of them have been willing to invest heavily on meds that don't hit a high percentage of the population just amazes me (from a corporate profit turning standpoint). After all - who said pharmaceutical companies are altruistic in nature? I am glad that we have some of these expensive meds available to us and understand why they are so expensive.Fog Ducker said:You also have to think that the pharmaceutical companies, are making WAY to much off these drugs that are WAY over priced, to push for research other than more drugs that make life bareable, rather than a cure.
But thats just my 2cents.
infectious diseased or genetic disorders?D Bergy said:Make a list of the diseases cured in the last twenty years, and that will pretty much tell you what I think.
Dan
D Bergy said:I am not cynical, but surely if there was a real effort to cure anything, we should see some kind of result in a twenty year time span. There are thousands of diseases, and most all of them have treatments, but to find one cure in recent history is as rare as Hens Teeth.
I think of it as realistic thinking based on the evidence at hand.
Dan
Know what, I'm gonna email them and ask them why there is nothing there..I see the research for LDN is being research at Penn Univer(?) But, its true that it works in close to 90%...shame on all of them if it comes down to almighty dollar!!!!!~S:voodoo:D Bergy said:Concerning the CCFA. Do a search on Low Dose Naltrexone on their site, and see what you get for articles and research on the drug.
Let us know the results, and then give me an explanation for the result.
I would like to think there is a reasonable explanation for the void of information on Low Dose Naltrexone, but I really cannot come up with one.
Dan
kasper87 said:Im confused. Everyone says there isnt enough awareness or money donated for research. There are MORE Discoveries and studies for Crohn's Disease than any other disease I have ever seen. What about breast cancer? Breast Cancer is the most funded disease I have ever seen in my life. Is there a chance at a cure? No. I highly Doubt it.
Sadly, My Crohn's Will never go away. I will suffer for the rest of my life because If you Cure something, than CHEAP CHEAP CHEAP drugs that cost 5,000 per infusion for us.... Just wont be available.. Well than Drug companies will suffer and lose millions.. WE CANT LET THAT HAPPEN Right?.. Its all money, its crap.
If another country finds a cure, a breakthrough, or something WORTH knowing.. Good Ol' America will step in and pay you millions to shut your mouth.
Just my 2 sense. As long As America is around to make of your suffering, we will never see a cure.
@ Kenny: I believe there's a strong chance of IBD being both infectious and genetic, hence it's enigmatic existence and difficulty to understand, but that's just a theory.
Polio and Smallpox seem to be the last diseases "cured." And these were both viruses treated with vaccines. Most of the diseases nowadays like IBD, Metabolic Syndrome, Heart Disease, and even Cancer are more than likely caused by the environment we live in. Until we change our environment, and also what we eat, I don't think you can ever really find a "cure" for these diseases. Unless of course, you can find a way to genetically change the inflammatory immune response our bodies react with. But even then, how do you know you wouldn't develop Diabetes, or hypertension if you continued to eat the same way you did before? Then of course, you would have to think of the money the pharmaceutical industry loses if any of these diseases are ever "cured." It's sucks to think about it, but it's just the way it is.D Bergy said:Cures for any disease of any kind. I would like to see a list of those diseases cured in the last twenty years. The age of the most explosive advances in technology ever.
I can think of one, but I have not really looked hard.
Dan
I don't necessarily think Crohn's is a part of our genetic makeup. By the sound of it, you make it sound like Crohns is ebbed into our DNA and there is absolutely nothing you can do to stop it. I agree that Crohns can have it's genetic causes, albeit minimal IMO. I don't see other animals out in the wild that have "adapted" that are out there having diahrrea all the time, hunched over in pain, emaciated, etc... Of course, I'm not a big animal watcher so I guess it could be happening. There has to be something in our environment that is making our body react this way. I've heard many different hypothesis'. Our environment is too sterile, we are not exposed to enough bacteria to build up immunity and eventually our immune system attacks itself is a good one. Personally, I think it lies with our sugar intake. It's pretty simple actually. Added sugar is essentially foreign to our bodies, it was only invented 5000 years ago. Sugar causes inflammation. The average American consumes 140-160 lbs of ADDED sugar EVERY YEAR BY THEMSELVES. You cut that number in half and I think a lot of our health problems go away.kenny said:I think vaccines only work against biotics though. What if this is not an infectious disese? Genetic disorders are a whole different discussion and that MAY be what Crohns is. When I was studying at The University of Guelph I took an elective course in Zoology called Humans in the Natural World. One of the books we used was Why We Get Sick; The New Science of Darwinian Medicine. From reading and discussing this book I came away with the idea that genetic disorders are the price we pay for the ability to adapt. And without that chance for random mutation we would not be here at all. We can try to correct the negative outcomes on a person by person basis but I just don't see how you cure a species genetic makeup. Or why you would want to.
rygon said:I watched a program last year about stomach ulcers. It was all about the cause being high level of stress / one of those things etc until a scientist decided to look more closely into it. Cut long story short he found elevated levels of a certain bacteria in most guts, thought that was the problem, help make a cure. People still didnt believe it was this bacteria so he had a swab of his stomach taken then he swallowed the bacteria, couple of weeks later he had stomach ulcers. The drug (peptobismol) cured it. Before that the patients had to take drugs for the rest of their life. http://news.bbc.co.uk/1/hi/4304290.stm
iminflamed said:I don't necessarily think Crohn's is a part of our genetic makeup. By the sound of it, you make it sound like Crohns is ebbed into our DNA and there is absolutely nothing you can do to stop it. I agree that Crohns can have it's genetic causes, albeit minimal IMO. I don't see other animals out in the wild that have "adapted" that are out there having diahrrea all the time, hunched over in pain, emaciated, etc... Of course, I'm not a big animal watcher so I guess it could be happening. There has to be something in our environment that is making our body react this way. I've heard many different hypothesis'. Our environment is too sterile, we are not exposed to enough bacteria to build up immunity and eventually our immune system attacks itself is a good one. Personally, I think it lies with our sugar intake. It's pretty simple actually. Added sugar is essentially foreign to our bodies, it was only invented 5000 years ago. Sugar causes inflammation. The average American consumes 140-160 lbs of ADDED sugar EVERY YEAR BY THEMSELVES. You cut that number in half and I think a lot of our health problems go away.
Lack of multi-site clinical trials/research to prove efficacy? Ditto with SCD or any diets. And we've had that discussion before - who's gonna pay for something that doesn't make them money in the end?D Bergy said:Concerning the CCFA. Do a search on Low Dose Naltrexone on their site, and see what you get for articles and research on the drug.
Let us know the results, and then give me an explanation for the result.
I would like to think there is a reasonable explanation for the void of information on Low Dose Naltrexone, but I really cannot come up with one.
Dan
pb4 said:Hey Jettalady, I use pure stevia extract, not truvia or any other stevia brand that is made with sugar...I also use honey...maybe try some pure stevia extract in your coffee? I buy it online from puritans pride, and a teeny weeny bit goes a looooooong way.
Animals die when stuff happens that is kinda my point. But I agree that our diet is bringing this out in people. The disease just never showed up in cultures with marine diets based in O3 fat intake as opposed to terrestrial diets based on O6 intake.iminflamed said:I don't necessarily think Crohn's is a part of our genetic makeup. By the sound of it, you make it sound like Crohns is ebbed into our DNA and there is absolutely nothing you can do to stop it. I agree that Crohns can have it's genetic causes, albeit minimal IMO. I don't see other animals out in the wild that have "adapted" that are out there having diahrrea all the time, hunched over in pain, emaciated, etc... Of course, I'm not a big animal watcher so I guess it could be happening. There has to be something in our environment that is making our body react this way. I've heard many different hypothesis'. Our environment is too sterile, we are not exposed to enough bacteria to build up immunity and eventually our immune system attacks itself is a good one. Personally, I think it lies with our sugar intake. It's pretty simple actually. Added sugar is essentially foreign to our bodies, it was only invented 5000 years ago. Sugar causes inflammation. The average American consumes 140-160 lbs of ADDED sugar EVERY YEAR BY THEMSELVES. You cut that number in half and I think a lot of our health problems go away.
Yea, they have a whole page dedicated to their pharmaceutical sponsors. That was the only clarification I needed to move onto another site.D Bergy said:I do not disagree with what you are saying, if the site is more or less a promotional piece for Pharmaceutical products, but I thought it was geared more toward helpful information for the treatment of the disease from the patients perspective.
At least I think that was the original intent, but maybe it has been influenced over time by other interests.
That site in particular was recommended by my Gastro's Nurse. I looked at it and checked the sponsors, and thought that it may be biased based on the sponsors. I did not know that for sure, and still don't, but then I found this site and it suited me much better, as there is real people helping other people, and there is no reason for a hidden agenda here.
I guess that is why I never became a member of the CCFA is I was never sure of their motives.
If it is supported by pharmaceutical companies, they certainly do not need my money to do research they should be doing and profiting from anyway.
If it truly is a patient oriented organization that is a different matter, and I would not mind supporting them in that case.
I just would like to know the truth, one way or another.
Dan
pb4 said:According to research there's definitely enough evidence to prove that IBD can be very genetic...there are cases where nearly every family member has an IBD...cats and dogs can also get IBD...cows have a form of IBD (Johnes disease)...it's a matter of IBD being triggered, that's half of the equation...researchers now know that smoking (including secondhand smoke) is a known trigger for crohn's, of course that doesn't mean it's every crohnies trigger either, it's a very individual disease which makes it that much tougher to figure out...birth control pill have also been linked to triggering crohn's, same with tooth paste...accutaine is linked specifically to ulcerative colitis.
The thing researchers cannot figure out is how it's genetically passed like they can with cistic fibrosis and other diseases.
And yes, it's also noted that refined sugar, artificial sweetners, caffeine, animal fats, fast-foods, processed foods/beverages are all suspect of exacerbating symptoms of IBD...it's also noted that IBDers tend to have a less healthier diet than non IBDers, consuming more processed foods (and the other above mentioned things)...of course that's not to say that healthy eating people don't get IBD, cuz they do as well, more than likely they are genetically predisposed to getting it, it's just a matter of it being triggered, (possibly smoking, secondhand smoke, BC pills, toothpaste, accutaine,or whatever else exacerbates symptoms could also be triggers).
I imagine cats, dogs, and cows can get IBD because of the stuff they eat. Dog food is probably a far cry from what dogs evolved to eat on, many dogs also eat table food which negates this example. Most cows nowadays are raised on corn or other forms of grain. Cows evolved on a grass based diet, so I can understand why they would have GI ailments. I was referring more to wild animals, you don't usually notice anything sickly about them (I watch a lot of Planet Earth). Also, I don't know the statistics, but there isn't one person in my family that has IBD, mother or fathers side. Brother and sister completely healthy, dad has hypertension, so does his father, but there are no signs of any IBD related disorder in my family. Anecdotal, I know. Are there any statistics that can corroborate your claim that IBD has a correlation with genes rather just mere chance?pb4 said:According to research there's definitely enough evidence to prove that IBD can be very genetic...there are cases where nearly every family member has an IBD...cats and dogs can also get IBD...cows have a form of IBD (Johnes disease)...it's a matter of IBD being triggered, that's half of the equation...researchers now know that smoking (including secondhand smoke) is a known trigger for crohn's, of course that doesn't mean it's every crohnies trigger either, it's a very individual disease which makes it that much tougher to figure out...birth control pill have also been linked to triggering crohn's, same with tooth paste...accutaine is linked specifically to ulcerative colitis.
The thing researchers cannot figure out is how it's genetically passed like they can with cistic fibrosis and other diseases.
And yes, it's also noted that refined sugar, artificial sweetners, caffeine, animal fats, fast-foods, processed foods/beverages are all suspect of exacerbating symptoms of IBD...it's also noted that IBDers tend to have a less healthier diet than non IBDers, consuming more processed foods (and the other above mentioned things)...of course that's not to say that healthy eating people don't get IBD, cuz they do as well, more than likely they are genetically predisposed to getting it, it's just a matter of it being triggered, (possibly smoking, secondhand smoke, BC pills, toothpaste, accutaine,or whatever else exacerbates symptoms could also be triggers).
iminflamed said:. Are there any statistics that can corroborate your claim that IBD has a correlation with genes rather just mere chance?
When a person has Crohn's disease, siblings have an appoximately 1 in 12 chance of developing inflamitory bowel disease, either Crohn's disease or ulcerative colitis, in their lifetime.
When a father or mother has Crohn's disease their children have appoximately a 1 in 15 chance of developing IBD.
iminflamed said:Yea, they have a whole page dedicated to their pharmaceutical sponsors. That was the only clarification I needed to move onto another site.
And I understand the SCDiet has it's flaws, but they pretty much tear it to shreds, which is very sad. Here are a few quotes from the article I found on their site.
"and there's little scientific evidence to show whether it is truly effective or which patient population it helps"
"for every patient I see who tried the diet and it worked, there are three to four others who tried it and it didn't work."
- dismiss the diet as having not enough scientific evidence then come back with this anecdotal conjecture.
They also said this regarding diet...
"Some of these food provide a valuable supply of nutrients as well as calories. Take pizza, for instance. The cheese offers calcium, protein, and vitamin D; the tomato sauce provides vitamins A and C; and the crust supplies B vitamins. The same is true for other popular favorites such as hamburgers or cheeseburgers"
Often, patients have questions regarding The Specific Carbohydrate Diet ™ (SCD), popularized by Elaine Gottschall, M.S., author of Breaking the Vicious Cycle. At this time, the SCD is supported only by patient testimonials, not by systematic studies. With diseases like ulcerative colitis and Crohn's disease, the only way to see if any treatment has widespread value is by appropriate, rigorous testing.The diet itself is not particularly unbalanced, but many patients find it particularly onerous to maintain. Decreasing poorly digestible carbohydrates may decrease symptoms of gas, bloat, cramps, and diarrhea in patients with IBD, but that is not the same thing as decreasing the inflammation, or affecting the disease process. Unlike the gluten-free diet for celiac sprue, which has a well-researched basis, and well-demonstrated track record for affecting the underlying mechanisms at work in the disease process, the SCD does not. Bottom line: it may be worth a try (there are plenty of other diets being touted in the marketplace), but do not abandon your conventional treatment, and keep in touch with your doctor.
iminflamed said:Are there any statistics that can corroborate your claim that IBD has a correlation with genes rather just mere chance?
The disease runs in families and those with a sibling with the disease are 30 times more likely to develop it than the normal population.
Mutations in the CARD15 gene (also known as the NOD2 gene) are associated with Crohn's disease[37] and with susceptibility to certain phenotypes of disease location and activity.[38] In earlier studies, only two genes were linked to Crohn's, but scientists now believe there are over thirty genes that show genetics play a role in the disease, either directly through causation or indirectly as with a mediator variable. Anomalies in the XBP1 gene have recently been identified as a factor, pointing towards a role for the unfolded protein response pathway of the endoplasmatic reticulum in inflammatory bowel diseases.
kenny said:I really like the epidemiological side of things.
I cant spell "They" most of the time but I can spell epidemiological with no trouble, go figure!
But it is really interesting to see the effects of cultural eating habits on populations and the rates of IBD.
http://www.bmj.com/cgi/content/full/330/7500/1120 Unit of Health-Care Epidemiology, Department of Public Health, University of Oxford, Oxford OX3 7LFWhat is already known on this topic
It has been hypothesised that the measles, mumps, and rubella vaccine (MMR vaccine) increases the risk of Crohn's disease, though the evidence base for this hypothesis is sparse
What this study adds
An ecological analysis of national data on hospital admissions found no increase in Crohn's disease associated with the introduction of the MMR vaccination programme, providing strong evidence against the hypothesis that MMR vaccine increases the risk of Crohn's disease
"We wish to make it clear that in [the 1998] paper no causal link was established between MMR vaccine and autism as the data were insufficient. However, the possibility of such a link was raised and consequent events have had major implications for public health. In view of this, we consider now is the appropriate time that we should together formally retract the interpretation placed upon [the] findings in the (1998) paper, according to precedent."
http://www.vaccinesafety.edu/cc-mmr.htmNo evidence for measles, mumps, and rubella vaccine-associated inflammatory bowel disease or autism in a 14-year prospective study. (Lancet 1998;351:1327-8) | PubMed Link
This Finnish study shows details of the 31 children who developed gastrointestinal symptoms after approximately three million were vaccinated. Dr. Peltola et al, after more than 10 years following adverse events associated with MMR vaccine, found no data showing an association between MMR vaccine and developmental disorders or inflammatory bowel disease.
I am right on board with this line of thinking... No one in my family has Crohn's, but I do have a genetic predisposition to autoimmune diseases (mom and many women in my family have hypothyroidism, dad has parkinsons disease, gma has raynauds syndrome)Misty Eyed said:In my personal opinion, I think the MMR could be a trigger to produce the onset of Crohn's in people with a genetic predisposition for Crohn's.
katiesue1506 said:I am right on board with this line of thinking... No one in my family has Crohn's, but I do have a genetic predisposition to autoimmune diseases (mom and many women in my family have hypothyroidism, dad has parkinsons disease, gma has raynauds syndrome)
I believe the meningitis vaccine/tentanus shot ramped my immune system up and it never turned off like it was supposed to. After I had those two vaccines the same day I started with the Crohn's symptoms (about a month later)
it seems a lot of people do despite evidence that that there was no actual upswing in pediatric ibd.Erazer said:I think the relatively new MMR vaccine has something to do with upswing in peadiatric IBD....but I still had to immunise my son......held off for as long as i could........but the bloody govt. cracks down on us Aussies!!