Patients Like Me

Has anyone read the article in this week’s New York Times magazine called, “Practicing Patients”? It’s about a website called, Patients Like Me, for people living with MS, Parkinson’s and AIDS who chart their meds etc. which is then turned into data that is shared online, enabling members to be more proactive in their health management. Manny, we need to incorporate this here! Check it out at www.patientslikeme.com.

This is a very good idea, Amy!

I have chatted with Ben, one of the founders of PatientsLikeMe, in the past and I have hopes that we will be able to find ways to connect with the me for the benefit of the diabetes community at large.

Diabetes seems to be a perfect fit for Patients like Me! You are so on the ball, thanks Manny!

Hi Amy,
I am sure you have a good idea and wish the best for all of us And i will probably be the only sour pickle you hear from. But I like Tu diabetes the way it is. I have several very serious medical problems and do not want to get on a site and list all of my medications or be part of a research project. I like the comfort of listening to everyone’s day to day issues and dealing with one day at a time. Everyone gives such encouragement and caring in all of their responses and it gives me the strength to get through one day at a time. It is all I can handle. I can make it just fine and keep things in control for one day. Tu diabetes is such a loving and sharing community/family I would not like to see it change. I would welcome as many people as want to join, but would like to see it stay the same.

And tudiabetes doesn’t have to change, the website of PLM could simply add diabetes to their roster…

Amy,
thanks for that link! I work as a home health aide, caring for a man who suffers from MS
and I think he will benefit from that site-
As for adding D to the roster there, that would be great to give people the ability to share what does and does not work in hopes of helping someone else out- fantastic!!
Take care & thanks again for sharing!

I totally agree! I am always so thankful that my sister has type 1 b/c we bounce ideas off each other about what’s working, and what isn’t working, and it always helps. I feel like the Patients Like Me site would be perfect for diabetes.

Neat site! It would be interesting to see what other diabetics are medicated with because I’m so new with this the plethora of perscriptions I have had and are using now is in a huge range. I’d be curious to see if I should still be on some meds and off others…

Thanks for sharing, Amy, very insightful!
Jess

PLM is very good at what they do. The brothers Heywood lost their other brother to MS, and are doing all they can to find a cure. PD is similar, as with HIV/AIDS. They are so focused on that work, that diabetes might not be one of their focuses at the moment, since TuDiabetes is here, and other information is available online? Did you look at the Lithium group? It is pretty amazing that they are doing to see if it is a possible cure - or at least a way to stave off MS for another few months. They just rolled out their behavioral silo as well. I do think it is a good way for patients to see what medications others are on, and what has worked for them. Especially newly diagnosed patients who aren’t sure what to do for treatment.

Hi amy, great idea and yes thanks for the link.

yeah…I suppose we could start a group here called, “Meds” or something like that where people talk about what meds they are on etc…