[pumpmylemma]

I wonder if their are any BioHackers out there that actually try to do this type of work. (Anyone?) I'm not one of them, but I've always had the impression they play more with bacteria than complex organisms. I think cost and accessibility are probably prohibitive to the garage biohacker, but would a very motivated biohacker have the advantage of not answering to an IRB?

[Mz]

I guess you could call me a "biohacker". I don't work on mice, I work on myself. I was diagnosed just under 10 years ago with "atypical cystic fibrosis" and, after a lifetime of being treated like a hypochondriac, promptly informed that "people like you don't get well". Having no other real choice, since doctors clearly had no plans to really help me get well, I began working on issues myself (and gradually began seeing results to a degree I never expected). My doctor expressed zero interest in how I was miraculously getting better. I get to "break" rules or make up rules as I see fit and that is, in fact, part of why I have made such astonishing progress.

FWIW:

Spent most of my life too sick to hold down a job and hid behind the label "homemaker and full time mom".

Spent about 3.5 months bedridden.

Diagnosed in May 2001 with "atypical cystic fibrosis".

Summer 2002: While attending GIS school in the smoggy LA area, got on boatloads of medication that doctors would not give me when I was bedridden and had no diagnosis. This helped save my life but left me a mess.

Spent the next several years getting off the drugs.

Antibiotic-free for something over 7 years (iirc).

Medication free since sometime in summer/fall of 2009.

Generally treated like a nutcase by the CF community which can't admit their real problem with me is they firmly believe the mantra "people like you don't get well" while simultaneously raising tens of thousands of dollars for the CF foundation and chanting "let CF stand for 'cure found'".

[pumpmylemma]

What you described is becoming much more common. I still have concerns, but I'm excited by the promise of websites like http://patientslikeme.com

(Disclaimer: I'm actually starting an HN-like website for rare disease people in a week or two; I had (or have) a rare type of cancer called Chordoma.)

[Mz]

I'm actually starting an HN-like website for rare disease people in a week or two

My contact info is in my profile. I would love to know when this is up.