Malkavian said...
Bpipe, it is difficult to do real patient studies due to ethical considerations and finding appropriate controls. The controls are really the issue, if you don't have them your study means absolutely nothing. It's easier to control a study with mice that are all genetically identical than with a heterozygous human population. Hence, using humans isn't really practical on a larger scale. That being said, they do use biopsy samples, do followups and have done genetic analysis for a number of patients, though these are more common with Crohn's. The work I'm doing now is actually based on patient studies, though we are working in cell culture and mouse models in the lab.
If your doc isn't following up and asking what works, either you have a crappy GI or you're not doing very well advocating for yourself. Once I was diagnosed I stopped having these issues, though I could have just been lucky. Both of the GI doctors I've had have consulted me about new drugs and considered my wishes and suggestions (questions about probiotics, helminths, staying off prednisone, et cetera) and if your doc doesn't do this I think you should fire them.
The cost of medications is a major downside of for-profit medicines and why I support single payer systems, but this is probably not the place to talk politics. It sucks, but it's not the scientists fault and will require a massive change in political structure to fix. I assure you, though, its the execs not the researchers that are getting the money. I will probably not make more than 40k/year until I am 30-35, and in an assistant professorship.
To the one complaining about not having a cure for cancer-do you know how many genes and mutations are involved in the umbrella of diseases we call cancer? To have a single 'cure' is ridiculous and again, our therapies are getting much more refined and effective. For example, we have dendritic cell vaccines for prostate cancer and specific oncolytic viruses. Not perfect, but still very cool and very far ahead of radiation and poorly tolerated chemotherapeutics.
And to the person who said we actually are supervillians: I will tell my colleague he can stop sleeping only four hours a night and getting paid what amounts to less than minimum wage per hours worked trying to figure out how certain cells work that he should stop working and catch up on his rest.
Another note in regards to money: NIH looks at all grants in a particular field at the same time and awards money according to what they deem most relevant and best designed. So if there is a study section on autoimmunity, they might pay more attention to something like MS or Lupus which can actually be lethal.
nightside of eden-Again, we haven't quite figured out how to reset the immune system, so until we work that out, no cure. On the plus side, once we do figure it out, we'll have cures for a lot more than just this.
As for what we understand of IBD right now: it's a combination of genetic and environmental factors. You MUST have a genetic defect or combination of genetic defects in order to have the disease. An insult to the colon like an illness causes the intestinal homeostasis to be thrown off. In someone without these defects, the person recovers without even, but in someone with IBD, the immunological balance in the gut is permanently knocked out of whack and the body starts responding to antigen in the gut that it was previously tolerized to. The most common culprit is bacterial flora, though I've seen studies where viruses are implicated, and OVA (a common antigen used in experiments) fed to mice with specific T cells can induce an inflammatory response.
Again, a lot of the anger stems from feeling like we're just being used for profit. Obviously we're aware that there are people out there in the field who truly want to cure disease/illness. But until Rx companies and greedy executives step down and stop having so much power over the field, I feel that it is unlikely that we will see cures for these things in our lifetime. It feels like all the drugs are doing is buying us little 'valuable' time while someone who truly does not understand what kind of impact these diseases have on a person are sitting back in their six figure home living the good life somewhere.
Nobody was attacking you, your colleagues, or anyone with a real desire to figure this out. But you are foolish if you think that a majority of people working in this field have their patients/clients best interest at heart.