10 posts tagged “Patients Like Me”

A Peek at the January Newsletter for Members

Posted January 26th, 2012 by

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

Have you been told, “But you don’t look sick”?  You’re not alone.  In our November newsletter, we mentioned how many of you use “The Spoon Theory” to describe the realities of your condition to others.  From MS to fibromyalgia to depression, “The Spoon Theory” has become such a popular analogy that it has its own forum tag.

Find Out What "Spoons" and "Forks" Mean in Patient Parlance

The idea is that patients living with a chronic illness have only a small number of spoons to use each day.  As a result, they must carefully choose how they expend their energy, as each task or effort costs one spoon.  If they use up all their spoons too early, that’s all they can manage for the day.  The drawer of spoons is empty.

If you’ve found “The Spoon Theory” helpful in getting friends and family to understand, you may be interested to hear there’s a new (and quite humorous) companion analogy called “The Fork Theory,” developed by MS member OldSalt. Unlike spoons, forks are not something to cherish, but the very things that cause you pain and discomfort.  Every day, the forks poke you, get in the way and pose challenges.  You can try to put them in a drawer, but they’ll always return when you least expect.

Can you relate to this notion of “battling forks” throughout your day?  If so, perhaps your friends and family can too.

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.

FIND PATIENTS LIKE YOU

The new Tools section (found in your profile sidebar) contains some oldies but goodies like your 3-Star Guide and Doctor Visit Sheet.  But it also has some new additions like Patients Like Me. This is where you can see a match up of all the patients who are like you and explore their recent activity.  It’s also the easiest place to find new members to follow.  (Looking for even more people to follow? Invite Others to join PatientsLikeMe.)

The New "Patients Like Me" Feature Is Found in the "Tools" Section of Your Profile Sidebar



The Choices Patients Like You – and Like My Mother – Face

Posted February 14th, 2011 by

Patients like you with life-changing conditions have to make choices every day, just like anyone else. These choices, however, typically have more at stake than how to RSVP to a party or even whether to walk away from an “underwater” home. For patients like you, your lives may be at stake.

I have watched my mother deal with three different types of cancers for more than 25 years, and the choices she had to make for me and my siblings to be successful were stark. As a single mother with a doctorate and two master’s degrees, she had to take jobs that paid less because cancer limited her energy. She took on enormous debt because she wouldn’t let her illness stop her from giving her children a private school education. Those choices started from physical and emotional hardship, then led to economic hardship.

Patients like you – and like my mother – have conditions you didn’t ask for, and your ability to keep a job and maintain economic stability isn’t just based on your talent or training, but also in your management of your conditions. Brought on by infection, age, genetic pre-disposition or unknown causes, these conditions factor into every choice, every decision—and in my mother’s case, which job to seek. We all make choices each day, but patients like you often have to choose between living well and just living.

One of the most important choices for patients like you is how to treat your disease. With your health care team, you try to make the best choice with the given information. The problem is information is scarce, untrustworthy or impersonal. That’s right, impersonal. What is a miracle treatment for one person could land another in the hospital. At PatientsLikeMe, we try to shine light on the information that can help each of you reach your best outcome. This is why we don’t just provide aggregate information, but allow you to access the profile of a person who is taking a medication to see if that person is “like you.”

The figure below speaks to the choices patients like you have to make about your treatments in a world with imperfect information. The chart depicts thousands of patient evaluations of efficacy and tolerability among major therapies across our 22 represented conditions. What jumps out immediately? That treatments for HIV and Parkinson’s are both more effective and easily tolerated than others out there for other diseases. Hundreds of millions of dollars have been devoted to research in those areas, and it’s paid off. Many believe Parkinson’s has a cure in sight, and HIV has, in less than 30 years, become a manageable chronic condition rather than a death sentence.

Efficacy vs. Side Effects

But what if you have other conditions? You are clearly making a choice between efficacy of the medications and the side effects that come with them. While aggregated data is great for directional insight, PatientsLikeMe is designed to let you drill down deeper. You can ask each person taking the treatment how it works for him or her. Why? Like everyone, you trust people like yourself who are going through or have gone through the same experiences. Only patients with similar situations can give you specific insight into what tradeoffs need to be considered when potentially trying a new medication. How will it affect my sleep? Is there daytime fatigue or “down time”? Can I operate heavy machinery? Will this treatment impair my ability to work in my profession?

These are the questions many of you are asking. These are the choices you make every day. My mother made her choices and has lived to see the fruits of her sacrifice. If we at PatientsLikeMe are going to help each of you answer the question, “Given my status, what is the best outcome I can hope to achieve, and how do I get there?”, then we have to continue to show the benefits of openly sharing information with each other. We have to excel at illuminating the real-world efficacy and risks of all kinds of treatments, and we have to help you connect with patients like you in a way that you get personal answers to your questions.

The more data you choose to share, the more we can all make the world of treatment information less imperfect and more personal. Simply stated, we’re all in this together.

PatientsLikeMe member dwilliams