Sharing Pain to Learn How To Relieve It

We all think of the conversations we have with out doctors as dealing with symptoms that are peculiar to ourselves, yet we hope the doctor has enough experience that they'll have seen something similar and know how to treat us in the best possible way. The problem is that we are really far better informed about how we feel and how something works or doesn't work than the doctor - much of their knowledge is second-hand (from us) and most of their experience with others is third-hand at best. 

The internet continues to astound me - and I've been around it far longer than most people.

I don't live in constant pain, or with a debilitating and/or fatal disease (well, OK, I have diabetes but it is very much under control), but I know several people who do. If you do too, then I think you should look at this video I recently watched and maybe join the site it talks of. One of a number of TED (Technology, Entertainment, Design) talks, this one details some of the information coming out of the web site founded by Jamie Heywood and his now deceased brother who died of ALS, the first disease it covered.

Wouldn't is be wonderful to be able to get knowledge about others' reactions to drugs and regimes directly from them, rather than through the interpretation and filtering of the medical system? It works for a lot of technological topics (mostly to do with the internet so far), why shouldn't it work for medicine too?

In fact, that's exactly what the PatientsLikeMe.com site tries to do - and succeeds by the look of things. More than that, it provides a forum for people with similar diseases to discuss, outside of the medical community, their experiences with the various drugs and regimes they've found or been prescribed, and to chart their progress. It provides tools and facilities that make the visits to your doctor more productive by showing them the real outcomes and possibly the relationships to others with similar disease and at similar stages in the progression.

Again, the internet breaks the barrier of physical communication by enabling peers (those with similar symptoms and diagnoses) to come together and share and support each other. I've asked to be notified if/when they turn on support for type 2 diabetes. If you don't see your particular chronic ailment on the site you might do the same.

richard

Tag: als pain medicine fribromyalgia hiv aids diabetes