Last night I hung out one on one with a guy I’ve known some time, RS.
He’s a relatively good friend of BB, hang out with him at Pumpjacks. Honestly, his entering the bar usually coincides with my patience leaving it. But hanging out with him last night, I got to know a far more interesting, if far more troubling, guy.
Basically, he has sleep and anxiety problems. More than that, he has motivational problems. Like me.
Patients like him were a nightmare. Not so much for me, but for the system, and even the profession. They expose our shortcomings as healers. Someone may feel awful. They may want to feel better. But they don’t feel better, when the only thing standing in the way is wanting it enough.
Addiction is a similar problem. If only I didn’t want heroin, I wouldn’t use it, and it wouldn’t be a problem. But I do want it, so I get it, and so I use it. The want itself is standing in the way.
I tend to think of these deranged wants as just a negative manifestation of the fact that we don’t have free will. All our wants and thoughts are predetermined: it’s only when there’s a conflict between them that we are aware of the problem.
It’s Scaevolian. Gaius Mucius throwing his hand into the fire. If you were threatened with death, or whatever the worst thing you can’t even imagine is, unless you held your hand over a candle, how long could you hold out? 30 seconds? Five minutes? Days?
By definition of the problem, you have to choose between severe, localized pain (a bad, but by definition not the worst thing possible) and the worst thing possible. Obviously, the rational choice is to avoid the worst thing possible. But none of us would be able to do it.
Ugh, this certainly isn’t my most coherent thinking. My mind’s a bit sludgy at this point. Maybe some more crystal will help.
It’s pretty well established in junkie-lore that you can taste dope after your shot, even if you don’t lick the site. Something just buzzes on your tongue, and whatever flavor profile (vinegary, bitter) pops up for a brief second.
I’ve looked into it briefly in the past and came up with nothing. Years ago, I told a med school friend about it, with “HTF?” appended. How is that possible? He was big into neuro, and he couldn’t come up with anything. Moreover, he explained that it will probably never be known. It’s not important research to do.
Not even from a basic science perspective? I mean it’s pretty bizarre. That alone usually warrants investigation.
But besides that…
The last couple of weeks have been messy. First the dope got really good. Then I decided to actually start taking my Suboxone (my immediate moneys are dwindling fast at $150+/day). Then the dope started getting really bad. Then the tent city was demolished, and the Downtown Eastside became a shit show again, further destabilizing the dope market.
Anyway, soon after I started the Suboxone, I got this powerful dysgeusia – abnormal, unpleasant sense of taste and smell. Everything was just revolting, worst being cigarettes, followed by my hands, followed by the room. The bad dope smelled especially bad. TK pinpointed it well: it was the taste of multivitamin (a highly probable cut – the light beige that Vancouver’s dope is these days is pretty hard to replicate from other pills or household powders). That dim, meaty umami taste. Not rotted meat exactly, but like meat that wasn’t quite grown right.
It was so powerful that on Tuesday night, I bolted awake at 0200 retching. I hadn’t eaten anything for days, so there was nothing to come up, and my stomach pushed and cramped its little froth out. After two hours of chills, rigors, and intermittent vomiting, I found a solution. I wanted something to obliterate my flavor senses, but couldn’t come up with anything. If I couldn’t amputate my nose and tastebuds, maybe I could placate them somehow.
The nosegay. Before the germ theory of disease, we thought that sickness spread through miasma: bad air that drifted up from swamps and sick people. Reasonably close, but completely wrong. To combat the foul vapors, all one needed were some pleasant ones. Women would hold little tussie-mussies under their noses as they passed the corpses in the streets. Plague doctors would stuff their beaks with camphor and rose petals.
Obviously, these were completely ineffective against Yersinia, but I wasn’t fighting an actual bug, just my own deranged nose. It’s not nearly so adapted.
First I rubbed toothpaste under my nostrils. When that didn’t work, I rubbed deodorant on my philtrum. It actually worked! It was still unpleasant. I don’t like the sticky, chemical tang of deodorant, but it broke the revulsion enough that I didn’t retch.
Have you guys got this? I often get hypersensitive to smells when dopesick, but never like this before, never to the point of vomiting. What works for you? Is it from the precipitated dopesickness from the Suboxone, or a side effect of the Suboxone itself? Unless it actually goes away, I won’t be able to complete my course.
Oh well, it’s not working very well anything.
The whole process of going of tracking down CMSRI led me to write the last post, but here’s what set it off.
I got my reply. When you go with Kenes, you go with quality!
Dear (my real name),
Thank you for your inquiry. Indeed, we are planning to hold the 4th International Symposium on Vaccines at the 10th International Congress on Autoimmunity. This symposium is an educational course that is supported by CMSRI, a research institute dealing with vaccine safety among other things. The program of the course is determined by the Congress Scientific Committee. In 2014 EACCME accredited the course for 3 credits. We will apply for accreditation also in 2016. Since the support does not come from a for-profit company of the pharma/medical device industry, rather from a non-profit research and patient-advocacy institution, ICA endorses the ISV as part of its official (pre-Congress) program.
You can read more about the 3rd International Symposium on Vaccines and CMSRI on these websites:
Anna (her last name)
Autoimmunity Congress Secretariat and Personal Assistant
Prof. Yehuda Shoenfeld, MD, FRCP
Head of the Zabludowicz Center for Autoimmune Diseases
OK, guess I’ll take this step by step.
1) CMRSI – Children’s Medical Safety Research Institute
When you look that up, you pretty quickly see that it’s not really an Institute, not how we usually think of them. Institutes do research. CMRSI is a funding agency. And despite the broadish names, their only interest is vaccine safety. And they have a hard-on for aluminum.
2) Claire Dwoskin
She’s the recurrent name on the page. In fact, it seems pretty much she’s the whole thing. Funded by her husband. Championing for “the twins.” (oh, that felt tacky. Yuck, sorry for that. But yeah, probably someone close to her she sees as hurt by vaccination. Whether or not this was a legitimate association, who knows).
Googling her brings you to this guy, Todd W. His site on her goes through how the Dwoskin Family Foundation has moved and shook the scene with their deep pockets.
Then, while on that page, you see some of her pet researchers…
3) Christopher A Shaw
Then you go to his defunct, out-of-date UBC website. Untouched since 2010. But you can Google his personal site next down. And there he upfrontly says that he gave up traditional funding in 2011 (NIH, Alzheimer’s Society) and has been solely funded by Dwoskin since then.
And you see Lucija Tomljenovic. Tomljenovic is one of his post docs. You do what the boss says, but as a post doc, you don’t join unless you agree.
4) Lucija Tomljenovic
She was with him a while. Publishing up until Nov 2013. Here’s a selection of her publications and – the point of this post! – her disclosures.
In that first one, while at UBC with Shaw. In a Dwoskin lab, she declares no conflict. But it’s “no commercial entity” the charitable status gets her out of it.
Aluminum and Alzheimer’s disease: after a century of controversy, is there a plausible link?
Association between vaccination and Guillain-Barré syndrome
YS has served as an expert witness in cases involving vaccine adverse reactions in the US National Vaccine Injury Compensation Program. LT declares that she has no conflicts of interest.
Human Papilloma Virus Vaccine and Primary Ovarian Failure: Another Facet of the Autoimmune/Inflammatory Syndrome Induced by Adjuvants
An informed consent has been received from the patients present their cases. Y Shoenfeld has served as an expert witness in cases involving adverse vaccine reaction in the no-fault U.S. National Vaccine Injury Compensation Program. LT, SC and CP declare no conflict of interests. The authors thank the Dwoskin Family Foundation for support.
Administration of aluminium to neonatal mice in vaccine-relevant amounts is associated with adverse long term neurological outcomes.
The authors thank the Dwoskin Family Foundation and the Katlyn Fox Foundation for their financial support. We are also grateful to Agripina Suarez and other laboratory members for their assistance.
Other point. While there, she meets Yehuda Shoenfeld. And where do we know that name?
Anna (her last name)
Autoimmunity Congress Secretariat and Personal Assistant
Prof. Yehuda Shoenfeld, MD, FRCP
Head of the Zabludowicz Center for Autoimmune Diseases
He’s the head of the ICA. Looking his name up….
5) Yehuda Shoenfeld
Oh, he’s on CMRSI’s Scientific Advisory Board too!
No wonder he had no objections to ISV being a sponsored session.
DB, what is your point?!
Sorry guys. Yeah, this isn’t meant to look like some conspiracy theory or anything. These people were all relatively upfront. Disclosed when they had to (but usually only then). I certainly wouldn’t and couldn’t file a complaint with this information.
But you get it right? This isn’t all neat and clean. When you look just a little into this bastion of objective truth, you come out with questions. OK, so CMRSI is Big Anti Vaccine. ISV is a puppet arm of that. What does that make the ICA? The secretariat is certainly an ally of these folks. How influenced is ICA by Big Anti Vaccine.
Another point. I don’t particularly care about this topic. And I don’t want to rag on these researchers in particular. They’re just doing what the system guides them to.
It’s just helpful that on one hand, we have a medical consensus: Vaccines are great! They might have some downsides, but all medicine does, but they are overwhelmingly a good thing!
And on the other hand: throw a bit of money at some people, and you can get your anti vaccine symposium onto a major world medical conference.
I’ve been thinking about this for awhile, but if you’ve read my last post, you can get an idea of where I’m going with this.
Over the next couple of weeks, I’m going to look/think/email about starting a database of funders. I should be able to go to the ICA’s website and see immediately “Oh, their principal sponsors are X, Y, and Z, and their Secretary has a deep relationship with X. How does this bias these results?”
We’re relatively good at it with industry – there’s been rules for decades. But these Institutes and Astroturfers. What is the authority on them? Where can you find their interests?
Wish me luck.
Or death, if you happen to be receiving a fair bit of nonindustry funding.
OK, so I’ve looked around, and I’m exhausted. More of that in a moment.
GS asked me why I was doing this? He asked this in the small sense (what do I particularly want to accomplish with these posts) rather than the large (why am I railing about the flakiness of knowledge instead of staying in medicine), and after this latest bout of research, I think I have an answer.
Over the years – after the humiliations of Big Tobacco, then Big Oil, then Big Pharma – we realized that money can influence science. We thought this was bad. We’ve called it conflict of interest. We require researchers to declare if studies were funded by someone with a commercial interest in the outcome, one way or another.
Great! I completely agree. But it falls short.
We act as if only money has this overriding influence – people and organizations will only seek to derail scientists (who wholeheartedly maintain themselves as dedicated to the truth) if they stand to get rich. Or not get poor, in the case of punitive lawsuits. We completely neglect that people have multiple motivators that can cause them to want the truth to come out in a certain form. Big Anti-Vaccine doesn’t necessarily have a financial interest (although with all the books, lectures, CAM alternatives, attention – which is as good as cash in this world – there certainly are some within the movement who are profiting). But they have an interest nonetheless.
Their money can buy science just as easily as Novartis’s.
To this end, all funding should be listed. Simple.
Some Knowledge Regulators already have this requirement, but clearly not enough (more about this below).
I want more transparency than that though. CMSRI is a Big Anti-Vaccine group. How do you communicate that in a funding declaration? When you can call yourself whatever you want, and you can change your name whenever you want, what does a declaration matter?
That Beall guy has his list of corrupt, untrustable journals. A similar list for researchers? Would that work?
Maybe a little. But here my central thesis is that ALL researchers are corruptible. It’s not the individuals. It’s the money. We all do it.
Maybe I’m looking at this backwards. Maybe we shouldn’t be thinking of this by where the money ends up, but by where the money starts.
A crowdsourced database of funding agencies? Where their money comes from. What their goals are. Whom they prey on.
That actually sounds pretty reasonable. Get the regulators to require complete disclosure of funding. Grow a database of who those funders are, and what they want.
That takes out most of the work for the Knowledge Users. Users – the public, other scientists, professional bodies – could look at a Knowledge Product – a journal, article, conference – and look at the Knowledge Influencers – the funding bodies, Big X, governments – to make their assessment.
Right now, that’s the piece that’s missing.
OK. Phew. That was exhausting again. I think I’ll post the CMSRI stuff separately.
At the crumbly part at the top of the rabbit hole I’m going down, there is the 3rd International Symposium on Vaccines.
My friend GS asked me what I thought of it earlier today, and I’ve spent most of the day between shots thinking about it and researching it.
I’ll try to summarize.
OK, so you go to the site and it looks legitimate, right? The 9th International Congress on Autoimmunity has registered their conference with conference booking company Kenes. And as part of the Congress, they are having a symposium. This is pretty common, little sub-conferences to a main conference. Often, they’re done as “streams” or something like that, but this doesn’t raise any red flags.
You can see Children’s Medical Safety Research Institute are a prominent supporter of the symposium on vaccines. Who might they be? It’s not immediately apparently what they would have to do with vaccines. Well, I guess vaccines are the most commonly administered drugs to children, so that makes some sense. Who are they anyway?
You go to the website. Oh. That looks odd. Despite kind of broad statements about children’s health in their About Us they only have FAQs about aluminum and vaccines. A quick Google shows that they’re pretty much an anti-vaccine lobbying group. Well, not lobbying. Lobbying is old school.
I don’t actually know if there’s a term for these groups. It’s kind of like Astroturfing. It’s kind of like lobbying. Bought science? It’s a bad faith attempt to legitimize knowledge, where someone with very deep pockets sets up a puppet organization to promote the “science” of their cause. Big Tobacco probably was the first. Big Food does it a lot these days. Big Oil. Big X. Big Anti-Vaccine? Is that a thing now? Yeah, it kind of is. There’s so much concentrated money and passion that any controversial issue can buy its scientists. See it lots with climate change too.
I don’t know how it used to work. Industries have always sponsored studies. But then someone has to put that knowledge in motion. I dunno, maybe these front organizations have always existed. They just feel so prominent nowadays.
Anyway, back to the 3rd International Symposium on Vaccines. When you look at the schedule for the broader 9th International Congress on Autoimmunity, you see that the ISV is actually just a series of presentations on first day of the conference. In yellow, when the real talks are in blue. Offered at the same time as the basic science refresher courses. None of the real participants are coming on Wednesday. Or if they are, it’s just to get some croissants and coffee, maybe go to the nice dinner, and catch up with their colleagues that they haven’t seen since the 8th Congress.
Then you look on the sponsorship page. Christ, CMSRI is a principal sponsor. That’s BIG money! Ahead of Roche and GSK. Only is Big Diagnosis (the commercial labs and testmakers – where the big money in autoimmunity is, even ahead of the biologicals, I think) as big of a sponsor.
So you piece it together. The International Symposium on Vaccines isn’t a real thing. Or at least it’s not a good faith scientific conference like it’s pretending to be. It’s a fringe, anti-vaccine puppet demonstration. Going through the motions. It’s mimicry. This is the small male lizard changing his coloration. They’re adopting the rituals and shapes of science to get the legitimacy of science. Funky!
And since I’m doing this emailing thing now, I wanna ask the Congress how they justify their behaviour. Letting this rogue, anti-science group purchase its way into piggybacking on their legitimacy. That’s sketchy. What do they tell themselves?
(Ugh, it’s a shame I’m so late to the party. The conference has come and gone, and the 10th Congress doesn’t have a ISV Symposium on its books yet)
Let’s see. Here’s the message I sent.
I was wondering if the 10th International Congress on Autoimmunity plans to host the 4th International Symposium on Vaccines as they have for the last three. As I understand it, the Symposium is a sponsored session, taught as a course, and not included in the scientific program. How should I interpret the relationship between the ICA and ISV? Does the ICA endorse the ISV?
(my real name)
I kept it pretty soft-edged. They are under no obligation to answer me.
I guess I should somehow communicate this blog post to CMSRI on their Facebook. They have a fair number of friends, and stirring up vaccine controversy has built more than a number of careers. Ugh, I hate all this stuff you have to do build a blog. To my handful of readers, thanks, but if I want more of you, I’ll have to keep doing these things.
Ugh, I should probably actually send a similar note to them. Actually start a fight. Good attention, bad attention, does it make a difference when you’re building a blog?