Do You Talk with Other Patients Like You?

When I first signed up to Patients Like Me, there were 1100 MSers who had already signed up. There are currently more than 4900. There must be a reason. They are actively recruiting and it seems to be working.

There are communities for MS, but also Parkinson's, HIV/AIDS, and ALS with plans to expand with other conditions. Now they have added a Mood Community that already has 1700 registered.

In March, The NY Times Magazine published an article about the benefits of MSers communicating with MSers about specific symptoms and drug reactions and just living with MS. Click on the Multimedia graphic to enlarge it. It shows some community groups by gender, age, and country. This is truly an international site.

technorati tags: patientslikeme, downthemspath, mssocialnetwork

Repairing Myelin

Have you seen this site? The Myelin Repair Foundation's vision is: "To accelerate the rate of medical research in order to more rapidly bring treatments to people with diseases for which there are no effective treatments or cures."

The non-profit Myelin Repair Foundation has a goal of accelerating the science of research to licensing a drug in the market. They focus on collaboration, acceleration, and results and hope to have a myelin repair drug available by 2009. To do this they recommend a model different from the traditional research model. They have been asked to share the new model and are pleased to do so.

I learned about this site from a message from Patients Like Me. Check it out. I found it interesting.

technorati tags: myelinresearch, msresearch, researchmodel, downthemspath, patientslikeme

Patients Like Me Are Signing Up and Making News

I first wrote about Patients Like Me in early September when Garry found it. There were more than 1100 MSers already signed up. It has been less than six weeks and now there are 1658 MSer members.

Patients Like Me was named as one of 15 companies that will change the world by Business 2.0 and CNN.com. Not only is this site valuable as a social network for patients, but it is a valuable source for medical researchers. Sounds as if it might be worth checking out, don't you think?

technorati tags: patientslikeme, cnn, business2.0, medicalsocialnetwork, ms, multiplesclerosis, downthemspath

MSers Being Social

Here is another health site, but this one has a different perspective. Patients Like Me promises to be just what its name suggests -- patients helping patients improve their quality of life. This is a social network for MSers.

My favorite upright Garry found the sight, joined as a caregiver, then sent an invitation to me. The sight uses social networking among members who are chronically ill, caregivers, guests and support staff. The illnesses covered are Parkinson's, HIV/AIDS, ALS and, of course, Multiple Sclerosis -- so far.

When registering, new members complete a profile beginning with your purpose for joining -- are you a patient? What condition? There are more than 1100 MSers. WOW.

You can enter as much or as little as you wish, but the more details entered, the more benefit. In addition to a biographical summary, you can enter symptoms, treatments, weight changes and disease progress. Based on your entry, your MSRS (Multiple Sclerosis Rating Scale) is calculated. There is a list of symptoms and treatments to select, but new ones can be added so your profile can be complete.

A printable Doctor Visit Sheet is available to ensure the doctor and patient are on the same page, or the page can be corrected. When your condition changes, the profile can be updated. This is a good record of your MS progress.

You can immediately connect with others who are patients like you.

technorati tags: ms, multiplesclerosis, patientslikeme, socialnetwork, mscommunity, downthemspath, mssymptoms, mstreatments