Many people die every year from undiagnosed bacterial infections. We’ve known for 25 years how to quickly, easily, and cheaply diagnose most bacterial infections with such tests. But you can’t patent use of PCR for testing, as it is too obvious to patent. And nobody could afford the trials needed to get FDA approval anyway, because the FDA insists on having a separate trial for each strain being tested for.

The method is generic: Choose the genome you want to detect and use an algorithm to design a set of probes for it. Download Genbank, let your computer crank away it it over the weekend, and you’ll have your set of primers or probes to test for the presence of every genome in Genbank. You might choose just 382 of the most-likely ones, to put on a 384-well microplate.

But the FDA wants a separate study for each of those 382 primers. Nobody could afford that even if they could patent the method. So hospitals keep using immunological assays, which are slow, unreliable, expensive, and can test for only one thing at a time.

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SkinChance: a Massively Multi-Patient Medical Study (Proposal)

Try Everything – Pay to Participate

Vitiligo is a condition that occurs when the cells responsible for skin pigmentation are unable to function. The root cause of vitiligo is unknown, and recommended treatments for the condition are require either specialist intervention in the form of skin grafts, or increase the likelihood of skin cancer by using UV photo therapy. All currently know treatments have highly variable success rates.

We propose a massively multi-patient study where worldwide patients are pay a nominal fee to participate (in the order of $10 + personal medicine costs) through crowdfunding, agree to test selected medicine on themselves for the trial period, and share results with the wider patient group in exchange for early access to the trials collated data.

This would give the opportunity and incentive to try a wider range of medicines than possible with geographically and personal schedule limiting hospital based studies. All forms of topical medication should initially be considered, but for scope purposes given for a trial group of 5000 patients/partcipants, testing in the order of 500 existing topical medications could be feasible. Specifically designing a study for in many cases using “off-label” local topical medication has risks, and weighted consideration between dosage, accessibility and availability of the existing medication, previous success factors, and known side effects must be considered. Motivating the patient/participant to keep to a prescribed treatment schedule, and accurately self report result is another risk for the study.
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But hey,… why not? Thoughts?

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Which, in combination with what you say about the hypertension medication, makes me wonder if some of the symptoms associated with schizophrenia might be down to something crazy like ‘brain inflammation’ (I’m sure there’s a proper medical term for it). Relieve the inflammation/pressure on a certain area, and the symptoms clear up.

The way that stomach ulcers used to be ascribed to stress and an unhealthy lifestyle, then someone came along with the crazy notion that you got ulcers because of a bacterial infection, and here’s Heliobacter pylori smiling and waving at us.

alternative medicine, which has been proven not to work by studies but people still use it anyway because they are stupid

That’s the attitude that drives me nuts. Yes, a lot of ‘alternative medicine’ is woo-woo stuff; yes, a lot of it is ‘old wives’ tales'; yes, a lot of it is things that used to work okay but now we have better and safer drugs that do the job instead.

But people don’t take cures because they’re stupid, it’s because (a) they don’t have access to anything better or (b) they’ve tried everything else and this is last-gasp desperation. The way people used to take St. John’s Wort to the eye-rolling and patronising smiles of the medical profession, until somebody tested it, found out “Holy crap, it does have an effect” and it was hauled off the shelves of all the health food stores because now it was An Official Drug and now you need a prescription for it.

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Minocycline gave me horrible vertigo, but I’d trade that for paranoid delusions! 😉

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I was actually thinking of the term “thought leader” as I wrote this article, but it’s so fuzzy that I think it raises more questions than it answers.

You said that at your institution people were talking about minocycline? Do you mind relaying what they said? If professors and attendings are discussing this kind of thing, the content of their discussions seems to be exactly the sort of information I would need to educate myself on how this process goes ahead.

Also, I am really happy to discover that you exist. I’d never heard of you or your blog before, and it will be very nice to have another rationalist psychiatry resident to talk to, question, and occasionally rant at. I have subscribed to your blog and I look forward to reading more of your stuff.

(that genetic test on clozapine seems like another example of something important people don’t know about)

And although I appreciate the need to debunk hysterical claims about how evil drug companies are, saying that they don’t distort data goes a little far – this is my go-to example.

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http://psychnews.psychiatryonline.org/newsarticle.aspx?articleid=1310500

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If only the original acne doctor had gotten a use patent, rather than utopically giving away knowledge, we’d be home free.

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