6 posts tagged “Newsletter Archive”

A Peek at the October Newsletter for Members

Posted October 31st, 2011 by

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

Do your friends and family give you the support you need as a patient? Or have you found that – despite their best efforts in some cases – they just don’t understand what you’re going through? We’ve noticed that this tends to be a hot topic in our forum, drawing many members to make their first post.

A PatientsLikeMe Member Enjoying Some Support

Here’s what some had to say:

  • “I was called a hypochondriac, a faker, a selfish jealous person, and the downfall of my family. I was astounded.” – Patient with fibromyalgia
  • “My friends know I have it and they are supportive, but I can tell some get uncomfortable talking about it.” – Patient with multiple sclerosis (MS)
  • “My family doesn’t really un derstand and has a tough it out or ‘pull yourself up by your bootstraps’ mentality.” – Patient with major depressive disorder
  • “I have lost two friends of over 10 years. They were sick of me being late, canceling plans, or saying I wasn’t up to doing things.” – Patient with rheumatoid arthritis (RA)

What about you? Do you believe anyone who’s not also living with the same conditions can truly “get it”? Share your stories in this ongoing forum discussion, a place where (as one member puts it) “you can find people who care because they know.”

Kate, Emma, Liz, Jeanette & Sharry

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

JOIN THE CONVERSATION

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

Need help using the site or want to learn more about recent changes?  Visit the Technical Help Using PatientsLikeMe Room.

THIS MONTH’S SITE IMPROVEMENTS

Thanks for your continued feedback about improving the site. Here are our top functionality enhancements for October.

A Popup Window for Entering Side Effects at PatientsLikeMe

In August, we changed the way we capture attributions – or the links between any two health concepts, such as treatments and side effects. As we watched you use these new features, we learned some valuable lessons about what makes sense to you from a user perspective and what is missing from a research perspective.  As a result, we’ve recently improved how we capture and reflect the data you’re entering so it’s done in the most meaningful way. See the full Release Notes for details on these recent changes to how you capture and share symptoms, side effects, “causes” and more.


A Peek at Our August Newsletter for Members

Posted August 29th, 2011 by

What kinds of things do we cover in our monthly newsletters for members? Take a look at the excerpt below from our August 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 reviewed a product on Amazon? Or rated a restaurant on Yelp? If so, then you know your experiences matter – and that they can help someone else make the right decision.

It’s the very reason there are “treatment evaluations” at PatientsLikeMe. There are so many difficult choices when it comes to treatment. Many of you talk about weighing the benefits and risks when starting, stopping or changing treatments. Oftentimes, this is something you have to revisit repeatedly throughout your journey.

Sample Treatment Evaluation at PatientsLikeMe

Whether your treatment is working wonders or has no noticeable effects, your treatment evaluation can help so many others like you make up their mind. Got something you’d like to share about your past or present treatments?

Kate, Emma, Liz, Jeanette & Sharry

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

JOIN THE CONVERSATON

What’s happening in the forum? Check out some of the recent buzzworthy threads 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.

THIS MONTH’S SITE IMPROVEMENTS

Thanks for your awesome feedback as we continue to improve our site. In this section, we’ll keep you up-to-date on new features designed to make your PatientsLikeMe experience even better. Here are our top functionality enhancements for August.

SYMPTOMS, SIDE EFFECTS AND THEIR CAUSES

We’re excited to share some big changes to the way you record symptoms and side effects – all based on your feedback. You told us you wanted to better see the connections between items on your profile. For example, sometimes a symptom may be a side effect of a treatment, or the cause of another symptom, but we didn’t have a good way to show that. Now we do, and we think it’ll allow you to share even more insights.

New Feature That Allows You to Indicate What Caused Your Symptoms or Side Effects

Check out this screencast for a visual tour of these important changes.

REASONS FOR TREATMENTS AND HOSPITALIZATIONS

In a related change, we’ve made it easier to add the purpose for a treatment or the reason for a hospitalization. Just like adding the cause of a side effect or symptom, you can now add the “why” part of the story without leaving your profile page. Simply click the “plus symbol” icon next to a treatment or hospitalization listed on your profile and type in your answer in the pop-up window. Done!

Enter a Treatment Purpose Without Leaving Your Profile Page Thanks to This Convenient Popup