18 posts from December, 2011

A Peek at the November Newsletter for Members

Posted December 5th, 2011 by

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

“Got dishes in the sink that won’t get washed today. I just feel so worthless. I could lie down and go to sleep right now I’m so tired.”

Can you relate to this description of fatigue?  Defined as a feeling of weariness, tiredness or lack of energy, fatigue is the number one symptom reported at PatientsLikeMe.  It affects more than 40,000 of you and plays a role in so many different conditions, from rheumatoid arthritis (RA) to Lyme disease to ALS.  What’s more, over half of you rate your fatigue as “moderate” or “severe.”

Fatigue Severity at PatientsLikeMe

Yet fatigue can be much more than feeling tired or unmotivated.  As the quote above illustrates, it can also impact your state of mind…and even your physical mobility.  Many of you report fatigue can lead to depressed mood, emotional lability, demoralization, negative thoughts, anxiety, lack of concentration, brain fog and increased pain.

So, what are 40,000+ of you doing to cope with this debilitating yet “invisible” symptom?  Check out the top reported treatments as well as the hundreds of treatment evaluations for medications such as Provigil, Amantadine, Nuvigil and Adderall; supplements like Vitamin B; and lifestyle modifications such as Naps (which come in particularly handy around the holidays!). You can also join in on the numerous forum discussions about fatigue to pick up tips and advice, including how some of you have tried to describe your fatigue to others using The Spoon Theory.

The first step is realizing that you are not alone.  The second is learning there are things you can do from the best source of all – other patients.

Kate, Emma, Liz, Jeanette & Sharry

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

JOIN THE CONVERSATION

What’s happening in the forum?  Check out some of these active 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 continued feedback about improving the site.  Here are our top functionality enhancements for November.

NEW CONDITION PAGES
Have you seen our redesigned condition pages?  They have a brand new look and feel (as the image below illustrates), and they have been re-organized to share data around five central questions.  For example, what’s it like to have this condition?  What do people take to treat it?  We hope you enjoy and learn even more from the new layout (which, for now, you have to be logged in to see).

A Glimpse of the New Parkinson's Condition Page

SYMPTOMS THAT ARE ACTUALLY CONDITIONS
Back when the PatientsLikeMe platform only supported a limited number of conditions, many of you added other conditions as symptoms.  With our recent site changes, you can now correctly show those “symptoms” as medical conditions on your profile, so we’ve merged them for you.  For example, if osteoporosis was listed as a symptom on your profile, you’ll now find it with your other conditions.  Be sure to check your condition list to make sure it’s up-to-date and accurate.  These changes allow you to add more details to your condition history, and they also make PatientsLikeMe’s symptom and treatment reports more useful.

A MYRIAD OF MESSAGING UPGRADES
Noticed anything different about My Messages on PatientsLikeMe (formerly called your Inbox)?  Here are the recent enhancements:

  • Are you an email scanner? You can now see an inline preview of any new message you receive as well as view more messages on the first page.
  • Search, sort and click! Now, you can click anywhere (not just on the subject) to open a message, search for a subject or username, and sort your messages a variety of ways.
  • When you send a message, we’ll now auto-complete the “To” field with members you’ve written before, and the text box will expand as you type. (This also happens with forum replies.)

A Glimpse of the "My Messages" Page, Where Members Send and Receive Private Messages


Write, Snap and Share for World AIDS Day

Posted December 1st, 2011 by

Join AIDS.gov in "Facing AIDS" for World AIDS Day

Today, December 1st, is World AIDS Day.  30 years after the first reports of AIDS in the United States, HIV – the virus that can lead to AIDS – is still a reality for 1.1 million Americans.  Complicating matters is that fact that one in every five people living with HIV in the United States is unaware that he or she is infected.

That’s why, despite increased awareness of HIV/AIDS, we still need to do more to ensure that every American who may be at risk gets tested. PatientsLikeMe is joining the AIDS.gov initiative in “Facing AIDS” today.  This social media campaign is an easy way to show your support of The National HIV/AIDS Strategy – and it’s inspired by the current trend of taking photos while holding a sign with a message written on it.  Are you ready to join the campaign too?

As the video above illustrates, here’s how it works:

  1. Write. Download a sign and add a message about why you are “Facing AIDS.”
  2. Snap. Take a photo holding your sign and upload it to the Facing AIDS Gallery.
  3. Share. Use social media (Facebook, Twitter, your blog, etc.) to share your photo.

What else can you do?  Remind people that you can locate your local HIV testing site by texting your zip code to “KNOWIT” (566948) or using the HIV/AIDS Prevention and Service Provider Locator, which includes maps and directions.   Also, check out and share our video about how one member has faced HIV/AIDS for more than 25 years (it has 40,000+ views on YouTube so far!), and if you’re a PatientsLikeMe member, subscribe to AIDS.gov’s profile page for updates.

Only by facing AIDS can we prevent it.