24 posts tagged “newsletter”

A Peek at the May Newsletter for Members

Posted May 29th, 2012 by

What kinds of things do we cover in our monthly newsletters for members? Take a look at the excerpt below from our May 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

Why PatientsLikeMe?  Over the years, many of you have shared why you’re here. We recently found some videos of members like you who helped create the community of 150,000+ that we are today.  Here’s what they had to say:

“To be truthful, I’ve learned a whole lot more from other patients than I could ever have in a doctor’s office,”  judy4etsu told us.  According to pokie too, who has PDepilepsy and type 2 diabetes, “You’ve got to talk to somebody.  You’ve got to say, ‘I’m having a bad day.’”  For sontzie66, it’s the disease measurement tools like the Parkinson’s Disease Rating Scale (PDRS).  “I answered all the questions, and I got my rating of where I was,” she said.  “I had no idea what level I was with the disease.”

Thanks to all of our members for being so willing to share your voices through videos, blog interviews, forum posts and more. Your experience matters and sharing what it’s like to live in your shoes is helping to change healthcare for the better.

What’s it like for youAdd a story to your profile today.

Kate, Emma, Liz, Jeanette & Sharry

Kate"" Emma"" Jeanette"" Sharry""

JOIN THE CONVERSATION

Have you poked around the forum recently?  We now have lots of different rooms to meet your needs.  For example, did you know about the Lungs and Respiratory Room, Women’s Health and Pregnancy Room and Kidneys and Urinary Room?  Find your favorite room(s) and check out these active threads below.

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

CONDITIONS GO INTERACTIVE

What do you want to learn at PatientsLikeMe?  This is a question we started asking new members during signup a few months ago.  Now, all of their comments are featured instantly on our new condition reports, and you have the opportunity to reply!  Visit the “Who’s New” tab (pictured above) to welcome a new member or offer a bit of advice.

In addition, there are now live feeds of all new profile stories related to that condition, including condition updates, symptom updates and QOL survey answers.  (See an example here.)  That way, you can keep up with your condition’s activity in real time and see other members’ comments, stories and replies all in one place.

Explore our revamped condition reports (while logged in) to try out these new interactive features!



A Peek at the March Newsletter for Members

Posted March 27th, 2012 by

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.

A Quote from a PatientsLikeMe Member Regarding Her Personal Coping Trick:  A "Bad Day Box" of Favorite Items

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

Kate"" Emma"" 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.

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

LABS, LABS AND MORE LABS

One of Many Labs You Can Add to Your PatientsLikeMe Profile

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:

Wondering about another lab?  Search for it here.