6 posts tagged “Newsletter Archive”

A Peek at the December Newsletters for Members

Posted December 21st, 2011 by

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

Can’t sleep this holiday season?  It’s not just you.  Did you know that…

  • More than 23,000 of you – nearly a fifth of all PatientsLikeMe members – report insomnia?
  • People with insomnia may also experience impaired function, mood issues (e.g. irritabilityanxiety) and daytime drowsiness as a result?
  • There are two forms of insomnia:  secondary (where it’s the symptom or side effect of something else) and primary (where it is its own disorder)?
  • Members with insomnia have shared their experiences via hundreds of treatment evaluations for prescription drugs such as AmbienTrazodoneSeroquel and Lunesta?
  • Members have also evaluated over-the-counter (OTC) sleep aids like diphenhydramine (Benadryl) and Melatonin as well as herbal supplements such as Valerian and Passionflower?
  • There are numerous forum discussions about insomnia, including the six featured below in “Join the Conversation”?

Finally, here’s something else to know.  Logging onto to the PatientsLikeMe forum in the dead of the night can be a great help.  It may not cure your insomnia, but chances are, you’ll find several others who are awake and going through the same thing.

Here’s hoping your holidays are as restful and joyful as possible.

– KateEmmaLizJeanetteSharry

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

JOIN THE CONVERSATION

What’s happening in the forum in the midnight hour?  Check out some of these insightful threads about insomnia 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 December.

UPGRADED LABS AND TESTS
There are new labs and tests you can monitor at PatientsLikeMe. Use the search tool or browse the list to see what’s now available, including Blood Glucose, Ejection Fraction, PSA, Creatinine, AST and more.  Don’t see the lab or test that you’d like to monitor?  Email us at dataintegrity@patientslikeme.com with your request.

CLICKABLE CONDITION NAMES ON PROFILES
You can now click on the condition name in the header of any profile, including your own, to view the new-and-improved condition page.  Checking out someone’s profile and see a disease you don’t recognize? Simply click through to learn more.  Or from your own profile, click through on any of your conditions to see who else has it, the most commonly reported treatments and much more.


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