Hair (a) Parent


No idea where this is from, but thank you Internet for this 100% accurate representation of my hair.


It’s that time again–the dreaded trip to the hair salon. My last three visits were instructive in that I now know I am completely out of touch with modern culture.

When did the need for a simple cut and color turn into a three-hour-long consultation exploring the inner life of my hair? I have a LOT of hair and without the assistance of Clairol, et al, it is almost entirely gray. In other words, I have an enormous and unruly brillo pad sitting on top of my head. I was rendered speechless the first time I was asked about my ‘goals’ for my hair. I should think that is pretty obvious. I would like it to learn conversational Norwegian and try its hand at Mediterranean cooking. Duh.

I guess I was shockingly naive and totally unaware that my hair is on a personal journey for optimum health and fulfillment–one that I am impeding by my negligence as a hair parent. Not only am I thoughtless about the needs of my hair, I consistently deny it hundreds and hundreds (and hundreds) of dollars of ‘product’ that will raise not just its IQ, but also its quality of life.  By setting overly simplistic goals of having my hair lay down nicely on my head and behave itself, I have cruelly subjected it to the tyranny of low expectations.

So back to the salon I go, no doubt to be humiliated by a young woman with glossy locks curled ever so perfectly (just at the ends) with a serious and concerned expression on her face over my profound hair failure. Hope there is no hair protection agency or I will surely be reported.




‘By Their Fruits They Will be Known’:* (Trump Edition)

First they came for the Socialists, and I did not speak out—
Because I was not a Socialist.

Then they came for the Trade Unionists, and I did not speak out—
Because I was not a Trade Unionist.

Then they came for the Jews, and I did not speak out—
Because I was not a Jew.

Then they came for me—and there was no one left to speak for me

Martin Niemöller


People who can watch this and still support this man– and who actually, unbelievably think this moronic bombast is presidential behavior–well, it says as much about their character as it does about his. I know there are those who rationalize their support for him by saying they don’t agree with his bigotry, but you can’t separate the bigot from the man at this point. If you support Trump, by default you DO support bigotry. Period. And that’s on you.

For my fellow PCD peeps, please, as you consider who you want to be president of this country, be aware that the woman who has done more for identifying and understanding PCD genetics, including being the primary driving force in developing a genetic test for PCD, is Muslim. She is in this country legally, loves this country, loves her job, loves the PCD community–and is exactly the sort of person Trump and his supporters would go after for deportation if he is allowed to put his idiotic policies in place. She is one of thousands of Muslims, Hispanics and people of color (we never hear him threatening to deport Norwegians, do we?) who make not just vital, but extraordinary contributions to our way of life, yet are at risk from the vile policies of this person and his angry and ill-informed horde of supporters. Many of you know her personally. Keep her in mind when you hear the hate speech and the even more vile (and generally childish and impossible to implement) policies coming from the Trump campaign. When you support this behavior, at any level, there are very real consequences for individuals that you may know and care about.

Will you speak out before there is no one left to speak?

*Matthew 7:16–“By their fruit you will recognize them. Do people pick grapes from thornbushes, or figs from thistles?

Since a lot of Trump supporters identify themselves as Christian, (apparently not understanding what that term actually means), here is an authoritative source–one they cannot argue with– that clearly spells out that what you do, what you associate yourself with = who you are. You cannot support someone whose entire schtick is based on bigotry without covering yourself with the slime from that brush.

Study on Sucralose Not So Sweet


New Study is Very Bad News–For Splenda-Addicted Mice

I don’t care about sucralose, don’t actually use it myself and have never spent much time thinking about it. But I do care about bad science and bad reporting on science and this sucralose study and associated media reporting is hard to ignore.  It’s one of the worst examples of hype and ‘jumping on the bandwagon’  bad science reporting seen in recent times.

Here is what we can definitively say (the only thing we can definitively say) based on data from this study: Sucralose appears to be associated with an increased risk of cancer (particularly leukemia) in mice who ingested 100X – 3000X the recommended daily intake. That is all we know. This is, of course, very bad news for Splenda®-addicted mice, but unless that describes you, there probably is not much for you to worry about. Contrary to what many health reporters appear to understand, it require leaps of logic over many massive hurdles to apply this data to actual risk of cancer in humans who are ingesting normal amounts of sucralose. I’ll go out on a limb and suggest that if you are ingesting 100x – 3000x the recommended daily dose of Splenda®every day, leukemia is probably the least of your concerns.

Massive over and under-dosing are tricks used by advocacy researchers (people who do research with a political agenda, not to get a truly useful result).  By force-feeding toxic-level doses, they basically ensure the negative result they desire. This is marketing, not science, and it should not be entirely surprising given the scientists involved in the sucralose study. The Ramizzini Institute in Italy performed the study. This is a group whose scientific bona fides have been questioned in the past due to biased and sloppy studies*. Additionally, while they brag about not taking money from industry special interests, they have no such problem taking money from non-industry special interest groups, aligning themselves with ‘clean eating/clean living’ advocacy groups. (Special interest influence is not limited to industry and the Center for Science in the Public Interest (CSPI), who actually changed a policy recommendation based on this single study feeling it had more ‘weight’ because there were no industry special interests involved, would be well-advised to remember that).

In reality, giving 100x – 3000x the dose of any substance (even a ‘clean’ one like bananas, for instance), will likely produce a negative biological result. This will not tell you that bananas are dangerous or cause cancer. But it will tell you that the researchers involved are astonishingly bad at planning studies that will produce truly useful information.

Is sucralose dangerous to humans who are using it in normal amounts for its intended purpose? I don’t know–the bulk of prior studies indicate it is safe, and this particular study does nothing to actually answer that question. Which is exactly the problem with all the media hype. It legitimizes a very flawed study–both in methodology and in inherent bias due to sponsorship. This does not illuminate, educate or help consumers to make decisions in any practical way (and it may, in fact, contribute to growing concern over orthorexia nervosa, an eating disorder that causes sufferers to be excessively concerned with eating the ‘right’ or ‘clean’ foods). It also brings to mind a cautionary appeal about (mis)applying laboratory or mouse data to humans. From Dr. Vinay Prasad of the Cancer Network: 

If a drug only has mouse or cell culture or laboratory data, it does not deserve any press (emphasis added). We know for a fact that the majority of the most promising compounds at this stage will fail in human trials, and covering these drugs is akin to doing a nightly news segment on someone who bought a lottery ticket, asking them what they will do if they win.” 

So the chance that this data will actually prove to be relevant to humans is roughly the same as the chance of winning the lottery, yet mouse studies continue to be hyped by the press and gobbled up as relevant by consumers all the time. It is really time for that to stop.

Then there is the ‘common sense’ perspective which is entirely missing in the reporting on this study. If there is indeed a link between sucralose and leukemia in humans  we would expect a corresponding increase in the incidence of leukemia since the introduction of sucralose. Fortunately, this data is readily available from a number of credible sources, including the SEER database maintained by the National Cancer Institute. Here is the incidence of leukemia from 1992 to 2012. Splenda®hit the American consumer market in 1999. There has been no alarming bump in new cases since that time. In fact, the incidence curve is about as close to a flat line as it is possible to get and, in fact, deaths from leukemia have decreased since 1999. So if there is actually an association between normal use of sucralose and leukemia it appears to be so vanishingly small that it has virtually no impact on disease incidence.  This is quite a stark difference to what the headlines suggest and should give longtime users of sucralose some peace of mind.

And that is the real problem with bad science and bad reporting on science. Thanks to a hyped and distorted sucralose scare, we have a population that will worry needlessly that they are at risk for leukemia, when in fact, unless they are mouse-sized with a mouse metabolism and eating massive quantities of the stuff, it is unlikely to be true. What a different health reporting landscape we would have if only media outlets would use a tiny bit of critical thinking before going all in on alarming stories like this.


* Oh the tangled web: Ramazinni is notorious for badly designed–by accident or intent, (not sure it really matters much if quality studies are important to you) studies– see the fallout from their 2006 anti-aspartame study, which was roundly criticized by regulatory authorities around the world for using sick rodents who were at increased risk for developing cancer in the first place. Their Splenda study had been reportedly rejected by six publishers since they first hyped it via press release (no data) in 2012. So kudos International Journal of Occupational and Environmental Health! You just started a Wakefield-esque sucralose panic based on information other journals deemed unfit for publication.  As an aside, the single purchase price for this article is $130, making it virtually impossible for most people to actually assess the content.

The Problem with Sloppy Science Reporting

A post popped up on my Facebook page today with a link to an online article from a site called Science Alert with this headline: New drug causes cancer to “melt away” in patients with advanced leukaemia. This article had been read and shared by thousands of people on Facebook, with one commenter lamenting that this breakthrough had not come in time for ‘my sister,’ and others thanking God and the scientists involved for the miracle of melting cancer cells. The problem? The article attached to the headline made no reference to ‘melting away’ cancer. It also indicated that this drug was so toxic it would only ever be considered for people with no other options, and revealed that, while it had reduced cancer cells in 79% of recipients, it had only resulted in a 20% remission rate.  Nowhere does the term ‘preliminary’ appear in the headline, even though the data generating all this fanfare was from a phase I trial. Critical, and potentially less positive, phase II and III trials have not even been done yet.

Hopefully, this drug will turn out to be the blockbuster people suffering from advanced


If only bad penmanship were the worst problem in medical communication

leukemia need and a 20% remission rate, if that holds true in larger trials, is nothing to sneeze at.  However, that is exactly the problem with hyped medical headlines. This data should stand on its own. Over-the-top hype unnecessarily tarnishes the whole endeavor. After all, how much confidence can you have in the veracity of research that has been misrepresented in such a blatant fashion?

The above example is notable, not because it is so unusual, but because it is now so common. This sort of sloppy, hyperbolic treatment of medical and scientific news has become mainstream and it is not just media outlets and medical journalists to blame. Pressure to publish, desperation for research funding and good old-fashioned competition between scientists and the institutes they work for can lead to a desire to embellish reality. Often the resulting press releases, interviews and articles are just truthful enough to assuage any guilt or second thoughts the authors might have about their up-sell, while at the same time being just ‘improved’ enough to be not quite accurate.

This push to produce snappy headlines rather than to educate and inform is now creeping into peer-reviewed publications, as well. Once the bastion of scientific integrity, these journals—even very good ones—can at times take a cavalier approach to accuracy in promoting papers. In a food chain of medical communication (publication of results-press release about publication-media coverage of press release-consumer attention), starting out with misleading information at the point of publication ensures that downstream consumption of that information will be fatally flawed. This is not a victimless crime. Selling unrealistic hope to the hopeless is the modus operandi of the conman, not the scientist.

So what can be done about this scourge of marketing over medicine, style over substance?

Recently, I had the opportunity to speak with Gary Schwitzer from In a distinguished medical journalism career spanning four decades, Mr. Schwitzer has seen a lot of good–and a lot of bad–medical journalism. In an effort to promote the good, in part by exposing the bad, Mr. Schwitzer, with funding from the Laura and John Arnold Foundation, started to analyze coverage of healthcare stories. He and his team established criteria for assessing coverage and for the first time, have created a system that aims to quantify the quality of medical reporting. This important endeavor has recently grown to include special consideration of press releases from institutes and universities, which often are the seed from which questionable stories sprout.

I contacted Mr. Schwitzer regarding a frustrating situation that impacted the patient group I work with. In summary, a well-regarded peer-reviewed journal published a paper with a less than clear headline, leading to false expectations among our patient community that a therapy/potential cure had been developed for a rare genetic lung disorder. It had not.

In raising our concerns to the journal editor, we were informed that, while they understood the title could be misinterpreted by the lay public, that was not their target audience. They took no responsibility for publishing a paper with an unclear title, instead laying blame on the ignorance of the audience. While it is true that their target readership is scientists, they seem unaware that there is now a robust thing called the Internet which enables almost instant information sharing–and does so without qualifying readers scientific bona fides before allowing access. The new reality is that they do not, in fact, exist in a rarified academic bubble any more. Whether they like it or not, lay people ARE part of their audience now and it really should not that difficult to be clear and accurate enough in what they publish to prevent misleading them.

This (IMO) dismissive attitude completely ignores that part of the vast group of lay individuals they lump into ‘not our target audience, so of no concern’ are actually the medical journalists and press release people who will be tasked with interpreting their unnecessarily unclear titles when writing for main stream media. This is why a misleading headline about a rare disorder prompted glowing news stories, complete with quotes from an Italian health minister, congratulating scientists on discovering a cure that does not actually exist and extolling non-existent therapies–all as the result of a single unnecessarily unclear title. It is a bit disingenuous to say it is not your problem if lay people don’t understand how scientific publishing works when it is clear from the outcome that many, many people found the title to be misleading. Were they all wrong, uneducated, or not important enough to be in the target audience?

Another justification the journal editor gave for ignoring our concerns about the title is that the content in the abstract made the limitations clear, even if the title did not. This is true, but as subsequent press releases and media presentations made clear, it was not just the patient community who failed to distinguish what was in the abstract from what was in the title. Clearly lots of people found it confusing. It also does not explain the logic behind publishing a paper with a title that does not adequately convey or match the content. Most of us learned that was a no-no in grade school composition classes.

I thought it was an interesting example of misleading (whether by intention or not) medical publishing, so brought it to the attention of The result is this podcast, shared with my thanks to Mr. Schwitzer and his crew. Enjoy!

UPDATE: Excellent interview on the Cancer Network site with Dr. Vinay Prasad regarding his recent letter to JAMA Oncology decrying the use of ‘superlatives’ in oncology reporting. Money quote:

“I am going to make one bold recommendation. Do not cover any drug that has not been tested in people. If a drug only has mouse or cell culture or laboratory data, it does not deserve any press. We know for a fact that the majority of the most promising compounds at this stage will fail in human trials, and covering these drugs is akin to doing a nightly news segment on someone who bought a lottery ticket, asking them what they will do if they win.”




None So Blind: The U of MN and Dan Markingson

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 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-ew-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

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 ,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, the left is making a strong showing this year. Rep Guillory’s rationale for pushing magical thinking-based science education? He was correctly diagnosed by a witchdoctor/voodoo practitioner (for reals–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.