My sister sent this. I think she was trying to help me find a Halloween costume I could make using materials on hand. Saggy boobs? Check. Strategically placed cellulite? Check. Everyday allover body paint in assorted colors? Check. But I think I might go for Golden Retrievers instead, so I don’t have to pluck anything–you know, more convenient, less painful.
And Now for Something Completely Different October 29, 2013
None So Blind: The U of MN and Dan Markingson May 9, 2013
Yesterday was the ninth anniversary of the death of Dan Markingson, a victim of (at the very least) questionable clinical research at the University of Minnesota Department of Psychiatry. For his mother, Mary Weiss, Dan’s loss must surely be compounded by the knowledge that nothing has changed at the U of MN. This tragic reality was brought home for me a week ago when I was challenged by U of MN researchers (from an entirely different part of the medical school) about inviting Dr. Carl Elliott to speak to patient advocacy groups about research ethics. They objected strongly to his inclusion on the schedule. I heard them out–people see things differently and I was interested in their perspective. What bothered me is not that they objected to Dr. Elliott, their fellow faculty member at the U of MN, but why.
This conversation took place in the context of a meeting of investigators who are part of a rare disease clinical research network at NIH. My role in this network is as chair of the patient advocacy group arm of the network, which is focused on patient welfare in the research process, as well as on advocating for research to improve access to therapies. Obviously, there are a number of diverse interests involved in a network such as this and there can be competing priorities and conflicts of interest. However, the role of the patient advocates should not be murky to anyone. Our job is to represent the patient interest first and foremost, even it that requires opposition to investigators, pharma or government interests at times. I assumed this was clearly understood by all.
Which is why it was so odd to have investigators track me down immediately after the meeting to express their concern that I would consider asking Dr. Elliott to speak. They were crystal clear about where their loyalties lay–’Dr. Elliott is too anti-pharma and that could jeopardize our current working relationship with ______ .’ They were dismissive, disdainful and made alternative suggestions naming people who have distinguished themselves primarily (IMO) for being ‘ethics for hire’ folks. One of their suggested speakers is someone who has actually taken the utilitarian ‘bean counter’ position regarding rare disease research, suggesting in writing that it is a waste of funds that could be better used to help diseases that impact more people. Why in the world would rare disease patient groups want such an individual to speak to them (not to mention he was intimately involved in a notorious case of research misconduct involving current researchers in this network)? Why would they assume their deference to pharma would/should supercede my obligation to the patient groups and, by extension, rare disease patients?
A top-level government staff person involved with the network was present for this conversation. I was a bit flabbergasted by the position of the U of MN group, so the following day called the staff person to be sure I had accurately interpreted the conversation. I had. It turns out that pharma is essentially controlling the agenda of several of these research consortia in a way that is potentially impeding progress for disease groups that are participating in consortium activities, but whose specific condition is not of interest to the pharma ‘partner.’ These groups were enticed to participate in a ‘collaborative’ research consortium, only to discover collaboration means accepting whatever research priority pharma dictates. Researchers have, in effect, surrendered control of their own projects over fear of losing pharma support. I think most people would call that bullying, yet the researchers from the U of MN seemed completely oblivious to the fact that they had essentially just acknowledged–to a patient advocate no less–that patient interests come second to appeasing pharma.
Happily, most of these consortia have very transparent and productive interaction with their pharmaceutical partners and if other researchers have been threatened with loss of support should the investigators fail to dance to their tune, I am not aware of it. It seems unlikely to be a coincidence that this issue came up with U of MN researchers, however.
The reputation of the U of MN has been tarnished by their handling of Dan Markingson’s case and, if current experiences are any indication, it will not be rehabilitated any time soon. On the anniversary of this tragedy, my heart bleeds for Mary Weiss and for Dan.
You Know All the Concerns People Had About Appointing An Anti-Science Creationist Nincompoop to Chair the House Science Committee?
It appears they were well-founded.
Lamar Smith (aforementioned nincompoop), appointed to chair the House of Representatives Science Committee by the Reddish Weepy One, is doing all in his power to drag the nation down to his Texas-sized level of scientific illiteracy. In typical Republican form, his first outrageous act was to propose massive funding cuts to the NSF. This extra-legislative tactic is, sadly, all too effective and operates on the following principle: If you can’t kill something outright, you can slowly starve it to death by denying funding (see also ‘flat’ funding for NIH for the past decade).
Having received some serious pushback for his direct assault on the nation’s scientific literacy, Smith came up with an EVEN BETTER way to obstruct the progress of science–have Congress included in the ‘peer’ review process of any paper resulting from work financed by a government grant. You heard that right. Mr. Smith (grad-e-ate of The Episcopal School of Texas, Southern Baptist University and, in fairness, also Yale where he learnt bizness, financin’ and lawyerin’) believes himself to be a scientific ‘peer’ capable of determining the validity, veracity and integrity of scientific papers.
Since very few people use the terms ‘validity, veracity, integrity,’ and ‘Congress’ in the same sentence, it is hard to imagine how Mr. Smith thought he could sell this particular gem. There is a certain Chutzpah-ish brilliance in it, however.
Louisiana State Senator First Dem to Win Coveted Wonkette ‘Legislative Shitmuffin of the Year’ Nom May 6, 2013
Nominees for Wonkette’s ‘Legislative Shitmuffin of the Year’ distinguish themselves by sponsoring, supporting or introducing legislation that it so idiotic, egregious and contrary to the common good that it defies human decency. Not surprisingly, the competition is fierce between the more far-right elements of our body politic. However, with the recent efforts of one Elbert Guillory (D [for dumb ass]–some hellhole in LA) to squash the repeal of an education bill that allows teachers to ‘supplement’ science material with pretty much whatever they want. Rep Guillory’s rationale for this? He was correctly diagnosed by a witchdoctor/voodoo practitioner (could it be his diagnosis was Gullibility about Disorders Disorder?) so, ipso facto, post hoc ergo propter hoc, all forms of belief system are equally valid, QED.
So many strong nominees this year! Not sure when Wonkette will be naming the winners, but they may want to consider establishing categories (just like the Oscar’s!) for local, state and federal shitmuffinery to accommodate all the talent.
Adventures in Yarn Dyeing May 4, 2013
Assuming you’re like most people, you no doubt have skeins and skeins of bare wool yarn sitting around and also lots of packets of Kool Aid® drink mix–the old-fashioned kind with no sugar added (say, like 30 or so in an assortment of flavors). Me too! That was EXACTLY the situation I found myself in one weekend when inspiration hit and I decided to try to transform my volumes of bland, natural colored yarn that was sitting around unused into volumes of bright, fruity colored yarn that will sit around unused. Problem solved!
If you wish to recreate my success–besides determination–here is what you will need:
Kool-Aid® other other no sugar added powdered drink mix with vibrant colors–amount depends on color saturation you want, but I used between 6 and 10 packets per 100 grams of yarn (note: you need to divide the yarn and the Kool Aid between mason jars if you use the microwave method)
Food coloring–I ended up wanting to create a teal color and needed a few drops of black food coloring to achieve it
Vinegar–any kind will do, but I used distilled white vinegar Note: Not necessary with drink mix products, but needed to ‘set’ the dye with food coloring
Canning/mason jars for microwave method
Large stockpot for stovetop method
Crockpot for crockpot method
Master Dyer (me)
Inexplicably Negative Curmudgeon– with ‘opinions’ (my son)
Quality Assurance Officer (Tiny Milt)
Manager willing to turn a blind eye to questionable practices (Gus)
Performance Enhancing Drug (with cream)
I’ve been following this case of alleged research misconduct at the U of MN for some time. I don’t usually like to ask my online friends to support causes that are of personal interest to me, but this an extremely disturbing situation that gets to heart of protecting people who participate in clinical research–so potentially all of us. A very troubled young man is dead and serious questions remain regarding whether he should have been enrolled in a study at all and about the egregious failures of the study coordinator,* the U of MN IRB (Institutional Review Board, the ‘independent’ group of reviewers charged by law with ensuring human subject protection), and the investigators in this case. A summary can be found here.
The University claimed ‘sovereign immunity’ from prosecution as an ‘agency’ of the state, so the Minnesota courts dismissed the case. The IRB was also declared immune from prosecution under sovereign immunity. The University then sued the victim’s mother for court costs in an apparent effort to discourage further suits.
There is an international call for the Governor of Minnesota to order an independent investigation of this situation from researchers, bioethics professionals, patient advocates and people who fear a similar thing could happen to their loved ones. If the U has nothing to hide, this investigation will exonerate them. If the alleged misconduct is true, this family deserves answers and the U of MN needs to clean up its act.
Medical research has a long and sometimes inglorious history in general and at the U of MN in particular. This is not the first time the psychiatry department at the U of MN or their affiliated physicians have been accused of wrongdoing (see New York Times article here). To prevent the abuses of the past, rules and regulations have been instituted that must be applied every time if the public is to have trust in the process. When the system fails it is critical to know how and why so that changes can be made. Given the history of failures at the U of MN, one can only assume this is institutional negligence that needs urgent attention.
If you have the time and would like to read more specifics of the Markingson case from Dr. Carl Elliott, an MD bioethicist at the U of MN, please click on the link above and/or the supplementary links below. If, after reading about the case, you agree an independent investigation is warranted, please sign the petition here. If you feel so compelled, please share on your Facebook pages or other social media sites. Remember, this is a call for an independent investigation–not a witch hunt. If there was no wrongdoing, the U of MN has nothing to fear.
For more information and analysis of this case and some of the serious issues it raises:
Original St. Paul Pioneer Press coverage of the story: http://www.twincities.com/ci_9306735?nclick_check=1
Carl Elliott’s thorough expose in Mother Jones: http://www.motherjones.com/environment/2010/09/dan-markingson-drug-trial-astrazeneca
Researchers and Bioethics Experts weigh in:
Five part series on the case in Scientific American: http://blogs.scientificamerican.com/molecules-to-medicine/2012/12/11/a-clinical-trial-and-suicide-leave-many-questions-part-1-consent/
Simple Baby Booties–Using Single Square of Felt July 8, 2012
I made these with Simplicity pattern #2397. Very easy–just uses
a single square of craft felt for two booties. There are two seams, a very short one in the back of the heel and one to attach the sole to the sides. I sewed the seams on a sewing machine, but it could probably be done by hand, as well. The embellishments are super simple embroidery stitches that even a novice could learn from freely available YouTube videos and the ties attach through grommet holes made with scrapbooking equipment. Quick, fun project!