There are a lot of things I left out of Analysis of Crohnology’s FMT Users: An Open Source Peer-to Peer Observational Study… Continue reading
In 1989 the Supreme Court set a potentially life saving precedent at the expense of our Fourth Amendment rights (that’s the one about search and seizure). The case, Skinner v. Railway Labor Executives Association, established the “special needs” doctrine which creates an exemption to the Fourth Amendment based on public safety. Continue reading
If you don’t appreciate what the next sentence says it doesn’t really matter. Patient social networks will do more for observational studies than what the Cochrane Collaboration has done for randomized control trials. What matters is that you tell your story. Your experience with treatments and medications is evidence. Patient’s stories should never be dismissed as anecdotes (it’s not only dehumanizing it’s a misuse of the word anecdote). We, the patients, need not have to purchase a credential and malpractice insurance to read case stories written by each other. Let’s, for a moment, never mind Abbott and AbbVie, Bad Pharma, the institutionalized biases produced by monetary incentives, case law, cancer, class actions, the FDA, Pharmageddon, insurance, The Truth About Drug Companies, marketing budgets, Obamacare, side effects, Overtreated, iatrogenesis, Vioxx, and Viagra. Let’s investigate a democratized disruption in action, a patient social network. Let’s use it to add outcome results to the literature of a procedure that shows promise for many chronic conditions and costs less than my monthly cell phone bill. But before you think this article is all roses… Continue reading
I’m sure someday we won’t need the word e-Patient. The tenants behind the “e” will be expected and eventually become the default patient/physician relationship. A problem solving partnership. That’s a change in culture. It will happen but we don’t live in that world yet. Ours is an antiquated paternalist top down legacy with its fair share of condescension, contempt, and greed. The great democratization of the conversation (as they say) can only go so far without legal challenges. The most institutionalized of which is our drug laws. But that’s not what this post is about. This post is about access to published health care related research. It’s a boundary where the e-Patient could get stopped. There are workarounds and subversive tactics to deploy. It’s baby steps or maybe even learning to crawl.
This is the second part in a series of research articles focused on drugs discussed by IBD patients on crohnsforum.com. The concept of Drug Side Effect Ratio is defined.
The previous article took a look at what drugs IBD patients discuss on crohnsforum. This article examines the instances of the phrase “side effects” near the drug names. I collected Google results by using a site specific search then determined the percentage of mentions of “side effect” near the drug name.
This article is a bird’s-eye view advocacy piece for anyone interested in the Inflammatory Bowel Disease community.
There’s a difference between the drugs commonly prescribed for IBD (Crohn’s and Colitis) and the set of drugs commonly taken by IBD patients. A simple example is to consider an IBD patient suffering from abdominal pain and can’t sleep. A typical course of drugs would not only be pain medication but also sleep medication. A few resources on the Internet do an adequate job of discussing the drugs taken for IBD symptoms and remission maintenance but there aren’t any resources which examine the distribution of drugs taken by IBD patients. This article attempts to quantitatively examine the distribution of drugs taken by IBD patients. Continue reading
In a nutshell: I was diagnosed with Crohn’s disease at age 25 in the summer of 2001 while living in Chicago, IL. My symptoms had started years earlier and my attempts to get help were stymied by a handful of misdiagnoses by general practitioners and emergency room physicians. My pain was in the lower right quadrant of my abdomen and among other issues I suffered from backaches, chills, fever, diarrhea, nausea, dehydration, fatigue, anemia, bloating and there was at times golf ball sized lump where the pain was. Continue reading
Below is a list of about 55 review articles related to Inflammatory Bowel Disease. Click the link for the PDF. If there’s a paper you think should be included please let me know. I will happily update this page with your suggestions. Continue reading