PatientsLikeMe ™

I registered but didn't get an activation message. How do I activate my account?

Before contacting us, please check your junk mail or spam folder as emails can sometimes get mislabeled as spam.  If you don't find your activation message in your junk mail or spam box, please let us know and we'll be in touch to help.

I forgot my password. What should I do?

No problem!   Just go to the password reset page, enter your e-mail address and we will send a message to your e-mail address with instructions for resetting your password.

How do I get started using PatientsLikeMe?

Here are three steps to get started:

1. Start by completing your profile. This gives other people some sense of who you are, what you've been through and helps other patients find patients "like you"--whether by age, location, treatments, or symptoms. So this is very helpful information. You can also add a photo of yourself (or one of your favorite things).


2. Next, provide your FRS outcome scores. FRS stands for Functional Rating Scale, and it is a self-report version of the ALS functional rating scale. The results will create a stickman, a graphical representation of your current condition that appears in your profile.
   
   You may want to add earlier FRS results so you have a more complete history of your illness. Use the FRS score page to do that. Just change the date at the top and enter your scores for that date.


3. Finally, complete your symptom and treatment information. This enables you to track and manage your condition. You now have a record of the progression of your condition, and you'll be able to track it more closely. You can print this information in your Doctor Visit sheet to provide your doctors and specialists with a complete record of your progression.

Are other ALS-related conditions included here?

In addition to ALS/Motor Neuron Disease this community includes patients diagnosed with Progressive Muscular Atrophy (PMA) and with Primary Lateral Sclerosis (PLS). You can find patients with these specific conditions by using  the Advanced Patient Search.

Can my doctor access or update my PatientsLikeMe information?

We hope that someday doctors will be able to directly access or update your PatientsLikeMe information (with your permission). If your doctor is interested in using PatientsLikeMe to access your information, please contact us and let us know.

How can I create a badge to use on email and other sites?

You can create a badge to use on other sites or as a signature on your email by going to the badge section of your Account information, and following the instructions there.

How do I enable JavaScript in my browser?

The PatientsLikeMe website uses an extensive amount of JavaScript to enhance your user experience. JavaScript allows us to provide faster responses to your actions by retrieving data instantly without always needing to reload the page.

Read below to see how to enable JavaScript on your specific browser:

Internet Explorer

1. In the toolbar, go to Tools > Internet Options
2. Select the Security tab
3. Click the Custom Level button
4. Scroll down to the "Scripting" section
5. In the "Active Scripting" section, check the Enable option, then click the OK button
6. Click the Yes button on the dialog asking "Are you sure you want to change the settings for this zone?"
7. Click the OK button
8. Refresh your browser

Firefox

1. In the toolbar, go to Preferences
2. Select the Content button
3. Check the Enable JavaScript checkbox
4. Click the OK button
5. Refresh your browser

Safari

1. In the toolbar, go to the Safari menu > Preferences
2. Select the Security button
3. Under "Web Content" check the option for Enable JavaScript
4. Click the X button to close the window
5. Refresh your browser

Opera

1. In the toolbar, go to Tools > Preferences
2. Select the Advanced tab
3. In the left pane, select Content
4. Check the option for Enable JavaScript
5. Click the OK button
6. Refresh your browser

What is an FVC score?

Forced Vital Capacity, or FVC, is a measurement of lung strength. It measures the patient's ability to breathe independently and is an important indicator of ALS progress.

What is an FRS score?

The FRS, or the ALS Functional Rating Scale (also known as the ALSFRS-R), helps you keep track of your overall condition by measuring symptoms in all parts of your body: head, chest, arms, and legs. You can ask your doctor to help determine your FRS score or take a simple survey on our site.

The stickman that appears for each patient is the graphical representation of that patient’s current FRS progress as it affects the various parts of his or her body.

The FRS progress chart shows a patient’s FRS progress against a background of typical FRS progress.

What does the stickman mean?

The stickman is a graphical representation of a patient’s current FRS score. The color of each section of the stickman—head & neck, arms, chest, and legs—reflects the severity of the disease  in that part of the patient’s body.

The level of severity is an approximation based on the 12 answers to the FRS survey. Green represents the mildest level of current severity, yellow represents mild severity, orange represents moderate severity, and red represents the most severe symptoms. A gray stickman indicates that no FRS data are yet available for that patient.

How do I cancel my account/remove my profile?

You can cancel your account at any time. Please contact us using the "Report Website Problem" at the bottom of the page to make this request.

How do I change my username?

You can ask the PatientsLikeMe support staff to change your username by using the "Report Website Problem" link at the bottom of any page. You cannot do this yourself, but we would be happy to help you.

How do I enable cookies in my browser?

The PatientsLikeMe website requires cookies in order to let you login. Cookies are small text files that are saved on your computer to facilitate communication between your browser and the website. In this case, the cookies are used to keep you logged-in from page-to-page, so you are not required to re-enter your password for each page.

To enable cookies for Microsoft Internet Explorer 6.x:

1. Select Internet Options from the Tools menu.
2. Then go to Privacy (tabs).
3. Under "Settings", move the slider bar to Medium-High.
4. Click the OK button

To enable cookies for Netscape 6.x and Firefox:

1. On a Mac, go to the Preferences in the Firefox menu. On Windows, go to Tools > Options.
2. Select the Privacy button
3. Check the Accept Cookies from sites checkbox
4. Click the OK button
5. Click Reload on the browser menu when you return to the webpage.

To enable cookies for Microsoft Internet Explorer 5.x:

1. Select "Internet Options" from the Tools menu.
2. Click on the "Security" tab.
3. Click "Custom Level" button.
4. Scroll down to the "Cookies" section.
5. Set "Allow cookies that are stored on your computer" to "Enable".
6. Set "Allow per-session cookies" to "Enable".
7. Click "OK"

To enable cookies for Safari:

1. On a Mac, in the toolbar, go to the Safari. On Windows, go to the Edit menu
2. Choose Preferences
3. Select the Security button
4. Under "Accept Cookies" check the option for Only from sites you navigate to
5. Click the X button to close the window

To enable cookies for Opera:

1. On a Mac, open the Opera menu. On Windows, in the toolbar, go to Tools
2. Select Preferences
3. Select the Advanced tab
4. In the left pane, select Cookies
5. Check the option for Accept cookies
6. Click the OK button

What do the symbols in the patient nugget mean?

The symbols you might see in a patient nugget may include:

  member is using a Bi-pap (non-invasive ventilator)

  member is using a feeding tube

  member is using a ventilator

Help, I think I received SPAM at PatientsLikeMe!

If you receive a private message that you consider abusive or SPAM (this happens very rarely,  but just in case)  please use the "report spam" button on the message you  receive.  This will send a copy of the message to multiple PatientsLikeMe staff members and we can address the issue as soon as possible.

How do I upgrade my web browser?

PatientsLikeMe is optimized to work best with modern, standards-compliant web browsers. There are several browsers available to choose from: All are free and make it convenient to transfer your favorites or bookmarks over to the new version.  Browsers we would recommend are:

Firefox 3 and up (download here)

Safari 3 and up (download here)

Internet Explorer 7 and up (download here)

Opera 9.5 and up (download here) 

Why are we encouraging our users to upgrade? The time spent developing the PatientsLikeMe website is disproportionally spent on fixing bugs seen only in older browsers, like Internet Explorer 6 (also known as IE6) which was released in 2001. Since that time, IE7 has been released and IE8 is right around the corner. The less time we need to devote to IE6 means we will be able to come up with new features to benefit all of PatientLikeMe's community members. The additional benefit to you is that you will have a faster, more responsive and secure browser, with convenient features like tabbed browsing and popup blockers.