Are you someone who likes to track things about yourself?  For example, do you keep an exercise log of how many reps you did – or a food journal that details what (and how much) you consumed?  Do you monitor your health and disease progression at PatientsLikeMe?

If so, you might not know it, but you are part of the growing Quantified Self (QS) movement.  Also known as “Body Data” and “Life Hacking,” the QS movement was started by Wired magazine editors Gary Wolf and Kevin Kelly in 2007.  The idea is to increase self knowledge through self tracking.  More specifically, QSers use technology to record data on various aspects of human life, from “inputs” (food, air) to “states” (moods, blood oxygen levels ) to “performance” (mental, physical).

The hub of the movement is http://quantifiedself.com/, an online community where QSers can share their methods and learn from what others are doing.  In addition, QSers get together face-to-face for regular Show&Tell meetings in various cities around the world as well as an annual conference, which takes place this September in Palo Alto, California.  According to the website, the conference is a “working meeting” for users and tool makers looking to collaborate on self-tracking projects and explore the potential effects of self-tracking on society.

For many QSers, such as astrophysicist-turned-computer scientist Larry Smarr, self-tracking conveys huge benefits.  According to this fascinating profile in The Atlantic entitled “The Measured Man,” Smarr sees it as a tool for battling obesity, defeating incurable diseases (in his case, Crohn’s disease) and revolutionizing healthcare.  He’s got a good reason, too:  this is a man who monitored his own blood work and detected an inflammatory state in his body long before his first Crohn’s symptom appeared.   While some people feel that with enough data every person could find something wrong with their health, Smarr argues that it’s far better to detect that something’s “beginning to go wrong” and seek “preventative maintenance,” just like you would with an automobile.

It’s a striking analogy.  Could we as human beings extend our lives – just as we extend the lives of our cars – through data tracking and “tune-ups”?  It’s one of the big questions at the heart of the QS movement.  But as far as we’re concerned here at PatientsLikeMe, self knowledge – as well as shared knowledge – is always a good thing.  That’s why we’ve developed tools to help you measure your disease progression (e.g. our Multiple Sclerosis Rating Scale), track how your treatments impact your quality of life, monitor over 200 lab results (e.g. Vitamin D, cholesterol, PSA levels) and record how you are feeling day-to-day (our InstantMe survey).  Better yet, we help you share that data with other patients like you, so that everyone benefits and learns.

What do you think?  Has “quantifying yourself” led to any breakthroughs for you?

What kinds of things do we cover in our monthly newsletters for members? Take a look at the excerpt below from our March edition. Also, in case you didn’t know, anyone – whether a PatientsLikeMe member or not – can view our current and past newsletters in our Newsletter Archive. See what we’ve been up to recently, and if you are member who’s not opted in to the newsletter, sign up today

MONTHLY MUSINGS

Flare.  Exacerbation.  Attack.  Acute episode. These are a few of the different terms used to describe a multiple sclerosis (MS) relapse—which can last anywhere from 24 hours to several weeks to even months.

MS isn’t the only condition that has exacerbations, however.  This pattern is also common with fibromyalgia (FM), rheumatoid arthritis (RA), psoriasis, IBS, depression and more.  Just check out all the threads tagged with either “flares” or “relapses” across the forum.

How do you get through an attack?  In a recent discussion in the MS forum, suggestions included lots of rest, watching movies, a pinch of good humor, letting go of guilt, accepting help, pacing yourself, having easy-to-prepare food on hand, talking to your doctor and trusting that “this too shall pass.”

And in the FM forum, one patient has shared her unique trick: a “bad day box” full of uplifting items.

Got your own coping techniques?  The forum is all ears.

- Kate, Emma, Liz, Jeanette & Sharry

JOIN THE CONVERSATION

What’s happening in the forum?  Check out some of the recent threads about flare-ups below.  Then jump in with your own questions and answers.

• The link between flares and weather changes (FM/CFS/ME Room)
• Off meds for surgery – will I have an RA flare-up? (Immune Room)
• Having a major flare today and can’t leave work (FM/CFS/ME Room)
• MS, pregnancy and the possibility of relapse (PatientsLikeMe Room)
• I’m newly diagnosed.  How long can a FM flare last? (FM/CFS/ME Room)

Need help with something on the site?  Visit the PatientsLikeMe Site Help Room for answers from veteran members.

LABS, LABS AND MORE LABS

Things have gotten a lot more lab-tastic at PatientsLikeMe. Thanks to your requests and suggestions, we now offer some 200+ labs to help you monitor your health conditions.  Here’s a sampling of some of the new labs and tests you can add to your profile:

• Vitamin B12
• Total Testosterone
• Breast Cancer Gene 1 & 2
• Prostate-Specific Antigen (PSA)
• Lipoprotein Insulin Resistance (LP-IR)
• Bone Mineral Density Test (T-score & Z-score)
• Levetiracetam Blood Levels
• Hand Grip Strength Test
• JC Virus Antibody

Wondering about another lab?  Search for it here.

What kinds of things do we cover in our monthly newsletters for members? Take a look at the excerpt below from our February edition. Also, in case you didn’t know, anyone – whether a PatientsLikeMe member or not – can view our current and past newsletters in our Newsletter Archive. See what we’ve been up to recently, and if you are member who’s not opted in to the newsletter, sign up today.

MONTHLY MUSINGS

Ever feel like you’re so busy seeing specialists that it’s easy to forget about your annual physical?  In addition to checking up on your overall health, an “annual” is a great time to monitor your blood work – such as cholesterol and Vitamin D levels – which you can now record on your PatientsLikeMe profile.  It’s also a good opportunity to discuss any new concerns with your primary care physician (PCP).

But with only a few minutes with your PCP and a whole year’s worth of health matters to cover, it can be hard to remember what’s happened between visits, and even harder to get to everything that’s important. Fortunately, your printable and customizable Doctor Visit Sheet (DVS) can help.  Bring this complete record with you to jog your memory and get your doctor updated quickly.

The DVS now includes your InstantMe history along with all the helpful notes you’ve made about things like treatment changes and new or repeat symptoms.  Bottom line: the more you use InstantMe, the more details you’ll have about how you’ve been feeling – and why.

Are you due for an “annual”?  Customize and print your DVS here.

- Kate, Emma, Liz, Jeanette & Sharry

JOIN THE CONVERSATION

What’s happening in the forum?  Check out some of these active threads below.  Then jump in with your own questions and answers.

• Anyone tried trigger point injections? (Neurological Room)
• Muscles reacting badly to exercise – help! (PatientsLikeMe Room)
• I may look normal, but I feel so alone (Mental Health Room)
• Treatment or no treatment – that’s the question (Epilepsy Room)
• Newly diagnosed and feeling overwhelmed (FM/CFS/ME Room)
• Any ideas for cognitive difficulties? (MS Room)

Need help with something on the site?  Visit the PatientsLikeMe Site Help Room for answers from veteran members.

PUTTING THE “INSTANT” IN INSTANTME

Did you know there’s a mobile version of InstantMe that’s now available for iPhone, iPad and, most recently, Android users? We hope it’s a convenient way to record how you’re feeling on the go – whether you’re in the line at the store or watching your child’s soccer game.  Stay tuned as we continue to improve Mobile InstantMe in 2012.