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

Burning. Stabbing. Aching. Throbbing. Dull. Have you used any of these words to describe pain?  Highly subjective to each individual, pain is a sensory experience triggered by the nervous system.  Some of the different types include nerve pain (neuralgia), muscle and joint point and arthritis pain.

If you’re living with chronic pain, it may feel like no one understands.  But pain is actually one of the top symptoms reported at PatientsLikeMe, affecting more than 40,000 of you and playing a role in so many different conditions, from fibromyalgia to rheumatoid arthritis to lupus. Over half of you rate your pain as “moderate” or “severe.”

How are fellow patients managing this “invisible” symptom?  Check out the pain symptom report as well as the hundreds of treatment evaluations for opioid painkillers such as Tramadol (Ultram) and Hydrocodone; anti-convulsant medications such as Gabapentin (Neurontin) and Pregabalin (Lyrica); and complementary therapies like acupuncture and massage. You can also join in on our forum discussions about pain for tips and advice.

Pain can make you feel alone – but you’re not.  Connect with thousands of others who can relate and share experiences.

- Kate, Emma, Liz, 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 Digestive and Intestinal Room, the Muscles, Bones and Joints Room or the Neurological and Brain Room?  Find your favorite room(s) and check out some of these active threads below.

• Shifting from “I can’t” to “I can” (FM/CFS/ME Room)
• Can a strict schedule stabilize you? (Mental Health Room)
• When one spouse becomes a recluse (Parkinson’s Room)
• Dealing with diabetic neuropathy (Diabetes Type 2 Room)
• When to tell a potential mate you have MS (MS Room)

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

WHAT MEN HAVE TO SAY

Last week was Men’s Health Week.  To honor the men in our community, we’ve spotlighted a few thought-provoking quotes by our male members.

“Along comes PD and life changes. Now, I get all anxious about having to be ‘on’ at parties and functions. But, I go to everything! My default answer is now yes instead of no because frankly it’s too much trouble to back out of everything I say yes to. I always enjoy myself and am glad I went. I push myself while I can and it seems to help. It is work, but it is worth it because it not only rewards me, more importantly, it rewards my wife.”

– Parkinson’s Pete, PD patient, 61 years old

“After a few days spent lazing about, I feel ashamed. I can look at this rationally and consider that in my current circumstances even surviving the day is an achievement but a lingering resentment at my inaction remains present nevertheless. I’m 50 years old, I’ve been unemployed for three months in my life, I’m now facing retirement and wondering whether I will be able to shake off this sense of negative self-perception.”

– Tommy Maker, ALS patient, 50 years old

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

What’s with sharing, anyways?

We’ve said it before, and we’ll say it again – we believe in the power of openness. By sharing your experiences, healthcare can be changed for the better.  You can monitor your health status and make changes accordingly; you can find out you’re not alone; and both patients and organizations can do research based on your real-world experiences.

Every single patient on our site contributes to this change.  When you add conditions, treatments and symptoms, you’re entering data that enables others to learn from you.  The way we see it, when everyone shares, everyone benefits.  To see how, check out these reports and dig deeper into the individual stories and data.

Treatment Reports
Things you can learn: How is this treatment working for other patients?  What side effects have they reported?  What are the most common dosages?

Symptom Reports
Things you can learn: How many other patients have experienced this symptom?  What are they taking to treat or manage it?  How severe is it for them?

Condition Reports
Things you can learn: Who else has this disease?  When did they experience their first symptom?  What are some of the most common treatments?

Thanks for everything that you’ve shared – and continue to share – at PatientsLikeMe.  Here’s to all that will be learned in 2012 as a result!

- Kate, Emma, Liz, 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.

• Do you have a family history of MS? (MS Room)
• Scared of electroconvulsive therapy (ECT) (Mental Health Room)
• A roadmap for survival, peace and non-suffering (ALS Room)
• What are your results with muscle relaxants? (FM/CFS/ME Room)
• How to adjust to not working and lower income (Immune Room)

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

WHAT’S YOUR STORY?

Everyone has one.  Tell yours in our new open text box (shown below).  Anyone who follows you will then see your story in their feed.  Stories are also important part of your health journal.  Have you used the new journal feature? Adding a story (and photo!) about any of your conditions is a great way to get started.

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

What type of exercise – and how much – is right for your condition?

We all know exercise is a good thing, but if you’re managing a disease, it can be a little trickier to find the right regimen. How much exercise? What type? How often? The answers, of course, are different for everyone, and it can take time and patience if you don’t know where to look. Why not start with patients like you?

Patients with many different conditions have shared what’s worked and what hasn’t for more than 150 types of exercise. Some of the most common ones include walking, yoga, stretching, aquatic therapy and swimming. How do other members rate these exercises? You can find out in the treatment evaluations. As one member writes, “I have felt less need for pain meds, and I have slept better on the nights I walk.”

Whether you’ve found your ideal routine or are still searching, you may want to become part of an “online buddy system.” For example, subscribe to one of the forum threads on exercise listed below in the “Join the Conversation” section. Can’t find one for your room? Start your own. Let’s get moving together!

- Kate, Emma, Liz, Jeanette & Sharry

JOIN THE CONVERSATION

Check out what other patients are saying about exercise in the forum. Then jump in with your own questions and answers. (New members are welcome anytime!)

• Hate exercise but need to do it (Mental Health Room)
• Physical therapy for MS (MS Room)
• Seizures triggered by exercise (Epilepsy Room)
• Debunking exercise myths (FM/CFS Room)
• Helpful exercises for arthritis (Inflammatory Room)
• The exercise accountability thread (MS Room)

Need help with something on the site?  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 September.

EMAIL AND NOTIFICATION UPGRADES
There are so many ways to stay connected at PatientsLikeMe – which can be a blessing and a curse sometimes. Recently, we made some major changes to our email and notification system. In addition to fixing reported bugs, we’ve made it easier for you to turn email notifications on/off with the click of a mouse. We’ve also improved the unsubscribe process. Visit your Email Settings page to update your preferences.

HIDDEN FORUM TOPICS
Wish you could avoid certain forum threads? Consider it done with our new “Hide Topic” button (pictured below). They’re not gone forever if you change your mind, however. Simply go to the “My Hidden Topics” page to find them.

AUTOMATIC LOGIN VIA VERIFIED EMAIL
If you’re tired of having to log in when you click a link in a PatientsLikeMe email – such as this monthly newsletter – you’re going to love hearing that you can now log in automatically via verified email. To turn on this time-saving feature, go to your Account Settings page and select “Yes” as shown below.

NEW OUTCOME SCORE FOR AUTISM
Finally, we’ve introduced a new outcome score for patients with an autism spectrum disorder (ASD) called the Autism Treatment Evaluation Checklist (ATEC). You’ll see that the ATEC score is now displayed in the “puzzle piece” icon in all ASD patient nuggets, as illustrated below.

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

How can you stay connected with PatientsLikeMe – and other patients?

Let’s say you’re a new member. You’ve completed your profile, but you haven’t connected with that many other patients yet. Some weeks, you forget to check in and update things at PatientsLikeMe because life gets in the way. What can do you to stay on top of your profile as well as what patients like you are learning? Here are four easy ways to get more involved and stay better connected:

Saved Search Alerts
On the Patients tab, you can search for patients just like you using filters such as condition, gender, age, treatment and more. Now, you can also save your searches and get an email notification anytime someone who meets your search criteria joins. Simply click the yellow bell icon to turn on these alerts.

Profile Update Reminders
Things happen with your health all the time – not just on the day you’ve got a doctor’s appointment. Why not sign up to get regular email prompts to update your profile? It’ll help you capture subtle changes, spot emerging patterns and have a complete record for your Doctor Visit Sheet.

Mobile InstantMe Update
Has something with your health put you in a good or bad mood today? Update your InstantMe survey on the go using your iPhone/iPad. (See “This Month’s Site Improvements” below for more details on this new application (or “app”), currently available to three-star members.

Thread/Profile Subscriptions
Have you noticed that certain PatientsLikeMe members have a similar health status as you…but are trying a different treatment? Follow their experiences with other treatments by “subscribing” to their profiles and/or forum threads. Their updates will then automatically feed to your homepage.

THIS MONTH’S SITE IMPROVEMENTS

Thanks for your awesome feedback as we continue working to improve our site. In this section, we’ll keep you up-to-date on new tools and features designed to make your PatientsLikeMe experience even better.

Here are our top functionality enhancements for July:

Are you an iPhone or iPad user? We have taken the first steps towards an app that will allow you to update your InstantMe survey on the go! No matter where you are, you can now share how you’re feeling and why.

Before rolling it out to everyone, we’re first giving our three-star members access to this app to help us test it out. (If you earn three stars, you’ll automatically see the button to download the app on your profile.)  Stay tuned as we work to expand this new and exciting functionality to all members as well as other types of mobile devices.

Last month, we introduced our clinical trial search feature, and since then, you’ve given us a lot of helpful feedback. Thank you! Here are some of our recent upgrades based on your input.

• Now you can select “Dismiss All” to clear out a large number of clinical trial matches – instead of having to delete them individually.
• Want to search “closed trials” that are no longer actively enrolling? Now you can do that too. This is helpful for past trial participants as well as those taking a drug that may be under investigation.