UnHex: A Conversation on Medical Pessimism

Whenever you hear something said very confidently the first thing that should come to mind is: Wait a minute, is that true?

-Noam Chomsky, Distorted Morality

More than a decade ago an acquaintance, let’s call her HippieGirl, recommended I read a book called Spontaneous Healing by Andrew Weil. I took one look at the cover and judged it rubbish. My issue, which is clear in retrospect, was a confusion about the person recommending it. She was too enthusiastic about herbs, taking echinacea and ginseng for everything, Bob Marley, not showering, and she likely thought that her tattoo of a dream catcher really did something supernatural in her sleep. Weil’s book cover at the time had his face covered with a hippie style beard. I lumped these two people together in my head and didn’t come back to Spontaneous Healing until a physician at a Crohn’s and Colitis Foundation of America conference mentioned it [1]. Oh how I wish I would’ve listened to HippieGirl’s advice (at least about reading the book). Continue reading

Posted in Book Reviews, Rants, Uncategorized | 2 Comments

An FMT Shitstorm on the Status Quo

Shitstorm! That’s what the recent weather’s been like at the Fecal Microbiota Transplantation (FMT) Facebook Group ever since Tracy Mac, the group’s founder and host of The Power of Poop website, posted a link to a blog post written by Matt Wood of Science Life (a University of Chicago promotional blog) called Taking the Scientific Approach to Fecal Microbiota Transplantation. Matt Wood’s blog post summarizes an editorial called Curbing our Enthusiasm for Fecal Transplantation in Ulcerative Colitis written by the co-director of the Inflammatory Bowel Disease Center at University of Chicago, David T Rubin. Rubin’s editorial is written about a journal article which appeared in The American Journal of Gastroenterology called Temporal Bacterial Community Dynamics Vary Among Ulcerative Colitis Patients After Fecal Microbiota Transplantation. If you’re still following, the members of the FMT Facebook Group immediately expressed outrage for what Mr. Wood’s article said. The shitstorm was enough for Science Life to end the ability of users to post new comments after only 3 days even though it’s the blog’s most commented post ever. Mr Wood decided he’d force the last word upon us with links to the journal article and editorial. The comments here will remain open: My skin is thick, this is an important topic, and I hold no sword pointed out. Continue reading

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Addendum to “Analysis of Crohnology’s FMT Users…”

There are a lot of things I left out of Analysis of Crohnology’s FMT Users: An Open Source Peer-to Peer Observational StudyContinue reading

Posted in e-Patient Community Research | 1 Comment

Public Health Priorities, Please

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

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Analysis of Crohnology’s Fecal Microbiota Transplantation Users: An Open Source Peer-to-Peer Observational Treatment Study

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

Posted in e-Patient Community Research | 5 Comments

e-Patient Boundaries and the Publishing Profiteers

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.

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A Brief Analysis on the Mentions of Side Effects on crohnsforum.com

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.
Continue reading

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Data Mining the Distribution of Drugs Mentioned by IBD Patients on crohnsforum.com

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

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Crohn’s Disease Case Story in a Nutshell

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

Posted in A Crohn's Disease Story, DIY Electronic Health Record, e-Patient Community Research | 2 Comments

The Humira Studies: CHARM, GAIN & CLASSIC II

Adalimumab for Maintenance of Clinical Response and Remission in Patients With Crohn’s Disease: The CHARM Trial

Efficacy and safety of adalimumab in Crohn’s disease

Adalimumab for maintenance treatment of Crohn’s disease: results of the CLASSIC II trial

Posted in e-Patient Community Research, Rants, Uncategorized | 1 Comment